Handbook of Thanatology

Handbook
of
Thanatology
2nd edition
The essential body of knowledge for

the study of death, dying, and bereavement
David K. Meagher and David E. Balk, Editors
Association for Death Education and Counseling®

The Thanatology Association®
www.adec.org
Published 2013
by Routledge
711 Third Avenue, New York, NY 10017
Simultaneously published in the UK

by Routledge
27 Church Road, Hove, East Sussex BN3 2FA
© 2013 Association for Death Education and Counseling, The Thanatology Association
Routledge is an imprint of the Taylor & Francis Group, an informa business
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writing from the publishers.
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registered trademarks, and are used only for identification and explanation
without intent to infringe.
Library of Congress Cataloging-in-Publication Data

Handbook of thanatology : the essential body of knowledge for the study of death, dying, and
bereavement / David K. Meagher and David E. Balk, editors. — 2nd edition.
pages cm
Summary: “The Handbook of Thanatology is the most authoritative volume in the field, providing
a single source of up-to-date scholarship, research, and practice implications. The handbook is the
recommended resource for preparation for the prestigious certificate in thanatology (CT) and fellow in
thanatology (FT) credentials, which are administered and granted by ADEC.”—Provided by publisher.
Includes bibliographical references and index.
ISBN 978-0-415-63055-9 (pbk.) — ISBN 978-0-203-76730-6 (ebook) 1. Thanatology—Handbooks,
manuals, etc. 2. Death—Handbooks, manuals, etc. I. Meagher, David K. II. Balk, David E., 1943-
HQ1073.H363 2013
306.9—dc23
2013002945
ISBN: 978-0-415-63055-9 (pbk)

ISBN: 978-0-203-76730-6 (ebk)
Ethical and Legal Issues and End-of-Life Decision Making i
Handbook of Thanatology
The essential body of knowledge for
the study of death, dying, and bereavement
Introduction to the First Edition ........................................................................ v
Introduction to the Second Edition ..................................................................vii
Certifications in Thanatology:
How the Handbook of Thanatology Can Assist ...............................................ix
Body of Knowledge (BOK) Matrix ................................................................... xii
List of Contributors ...........................................................................................xv
Part 1 Dying ............................................................................................1

Introduction to Part 1
Chapter 1 Culture, Socialization, and Dying ...............................................3

Charles A. Corr and Donna M. Corr
Chapter 2 Religion, Spirituality, and Dying .................................................9

Marcia Lattanzi-Licht
Chapter 3 Historical and Contemporary Perspectives on Dying .............17

Kenneth J. Doka
Chapter 4 Life Span Issues and Dying .......................................................25

Mary Alice Varga and Robin Paletti
Chapter 5 The Family, Larger Systems, and the Dying Process ...............33
Stephen R. Connor
Chapter 6 Ethical and Legal Issues Related to Dying and

End-of-Life Care ........................................................................43
Madeline Jacobs
Part 2 End-of-Life Decision Making

Introduction to Part 2 ...............................................................51
Chapter 7 Culture, Socialization, and End-of-Life

Decision Making.........................................................................53
Andrea C. Walker
Chapter 8 End-of-Life Care:

Spirituality and Religion ...........................................................63
Richard B. Gilbert
ii Handbook of Thanatology
Chapter 9 Historical and Contemporary Perspectives on

End-of-Life Decision Making ....................................................73
James L. Werth, Jr.
Chapter 10 Life Span Issues and End-of-Life

Decision Making.........................................................................81
Andrea C. Walker
Chapter 11 The Family, Larger Systems, and

End-of-Life Decision Making ....................................................91
Blair Sumner Mynatt and Robyn L. Mowery
Chapter 12 Ethical and Legal Issues in End-of-Life

Decision Making.......................................................................101
Madeline Jacobs
Chapter 13 End-of-Life Decision Making: An Irish Perspective ..............111

Dolores M. Dooley
Part 3 Loss, Grief, and Mourning .......................................................119

Chapter 14 Culture and Socialization in Death,

Grief, and Mourning ................................................................121
Paul C. Rosenblatt
Chapter 15 Religion and Spirituality in Loss, Grief, and Mourning ........127

Dennis Klass

Loss, Grief, and Mourning .......................................................135
Chapter 17 Life Span Issues and Loss, Grief, and Mourning:

Childhood and Adolescence ....................................................149
Kevin Ann Oltjenbruns
Chapter 18 Life Span Issues and Loss, Grief, and Mourning:

Adulthood .................................................................................157
David E. Balk
Chapter 19 The Family, Larger Systems, and Loss,

Grief, and Mourning ................................................................171
Alicia Skinner Cook
Chapter 20 Ethical and Legal Issues and Loss, Grief, and Mourning ......179
David K. Meagher
Table of Contents iii
Part 4 Assessment and Intervention ................................................191

Chapter 21 Culture and Socialization in Assessment

and Intervention ......................................................................193
Ester R. Shapiro
Chapter 22 Religion, Spirituality, and Assessment and Intervention .....209

Kenneth J. Doka

Assessment and Intervention .................................................219
Robert A. Neimeyer and John R. Jordan
Chapter 24 Life Span Issues and Assessment and Intervention .............239

David A. Crenshaw
Chapter 25 Assessment and Intervention in

the Family and Larger Systems ..............................................245
Jennifer L. Matheson
Chapter 26 Ethical and Legal Issues in Assessment and Intervention ...255

Jackson P. Rainer
Chapter 27 On Bereavement Interventions:

Controversies and Concerns...................................................263
Simon Shimshon Rubin, Ruth Malkinson, and Eliezer Witztum
Part 5 Traumatic Death ......................................................................273

Chapter 28 Culture, Socialization, and Traumatic Death ........................275

Jeffrey Kauffman
Chapter 29 Religion, Spirituality, and Traumatic Death .........................285

Gerry R. Cox
Chapter 30 Historical and Contemporary Perspectives

on Traumatic Death ................................................................291
Lillian Range
Chapter 31 Life Span Issues and Traumatic Death ..................................297

Karolina Krysinska and David Lester
Chapter 32 The Family, Larger Systems, and Traumatic Death ...............305

David A. Crenshaw
Chapter 33 Ethical and Legal Issues in Traumatic Death ........................311

David K. Meagher
iv Handbook of Thanatology
Part 6 Death Education ......................................................................321

Chapter 34 Culture, Socialization, and Death Education ........................323

Lynne Ann DeSpelder and Albert Lee Strickland
Chapter 35 Religion, Spirituality, and Death Education ..........................333

Robert G. Stevenson

Death Education ......................................................................347
Illene Noppe Cupit
Chapter 37 Life Span Issues and Death Education ..................................357

Illene Noppe Cupit
Chapter 38 The Family, Institutional/Societal Systems, and

Death Education ......................................................................367
Kathleen R. Gilbert and Colleen I. Murray
Chapter 39 Ethical and Legal Issues in Death Education ........................379

Carla J. Sofka
Part 7 Three Overarching Indicators Within

Fundamental Knowledge of Thanatology ..............................393
Chapter 40 Professional Issues and Thanatology .....................................395

Carol Wogrin
Chapter 41 Resources and Research in Thanatology ...............................411

Melissa Bell, Gordon Thornton, and Mary Lou Zanich
Chapter 42 Thanatology in the Digital Age ...............................................429

Anne Smith and Corinne Cavuoti
ADEC Code of Ethics .......................................................................................441
References .........................................................................................................451
Index of Key Terms ...........................................................................................519

v
Introduction to the
Handbook of Thanatology
The Essential Body of Knowledge for the
Study of Death, Dying, and Bereavement
1st Edition
Thanatology—the study of death and dying—at its core centers on the whole person.
Holistic knowledge and holistic practice intertwine in our interdisciplinary efforts. If ever
there was an arena requiring that the research-practice gap be bridged, surely it occurs
where thanatologists engage with persons dealing with human mortality. Mastering the
complex, multidisciplinary arena that is thanatology is a task, however, beyond human
capability.
As in all arenas of scholarship and practice, thanatology too has become more vast
than any one individual can be expected reasonably to master. The Association for Death
Education and Counseling (ADEC)—The Thanatology Association—sought to develop
a comprehensive resource covering the fundamental and foundational knowledge in
thanatology, while acknowledging that no one person can ever know all there is to know
in this complex field. As one of the oldest interdisciplinary professional organizations in
the field of dying, death, and bereavement, ADEC is dedicated to promoting excellence
and recognizing diversity in death education, care of the dying, grief counseling, and
research in thanatology. Based on quality research and theory, the association provides
information, support, and resources to its international, multicultural, multidisciplinary
membership, and through it, to the public. The Handbook of Thanatology is just one of
these essential resources.
To find out more about the structure of the handbook and how it came to be, see
Certifications in Thanatology on page ix. This is not the be-all and end-all of thanatology
resources; ADEC expects to release a revised edition of the Handbook of Thanatology:
The Essential Body of Knowledge for the Study of Death, Dying, and Bereavement in
years to come, as our vast field continues to grow.
David E. Balk
Editor-in-Chief, Handbook of Thanatology
Professor, Brooklyn College of the City University of New York
February 8, 2007
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vii
Introduction to the
Handbook of Thanatology:
The Essential Body of Knowledge for the
Study of Death, Dying, and Bereavement
2nd Edition
The Body of Knowledge (BOK) Matrix on page xii – xiii of this edition reflects how the
basic knowledge of the field of death education, counseling, and research has evolved
since the first edition of the Handbook of Thanatology. The goal of this edition is to
provide substantive content to reflect this evolution and serve as a major resource for
those preparing to engage or already professionally engaged in the field.
As in the first edition, the contributors for this edition come from a variety of
professional fields: counseling, education, administration, and research. They address a
number of topics, many of which include recent controversies; thus, the reader will receive
a variety of perspectives from differing viewpoints. Significant changes have occurred
within the legal, medical, and ethical arenas with regard to the treatment of the terminally
ill and the rights of individuals to actively participate in the decisions around their care
and the care of their loved ones. Research has revealed more information about how we
humans deal with our own death and the death of our loved ones. Medical advances have
resulted in changes in the way we treat the dying. In addition, with the improvements
made in organ transplant technology, our ability to prevent death in others has enhanced.
Our knowledge of the psychological and emotional responses to traumatic death has also
increased our ability to provide immediate and long-term support to affected individuals.
The 21st century may be considered the digital age. To address the impact the Internet
has had on death education, grief counseling, and research and in addition to a discussion
of this topic in two revised chapters (Historical and Contemporary Perspectives on Death
Education and Resources and Research in Thanatology), we have added a new chapter
(Thanatology in the Digital Age) to focus solely on this issue.
This edition goes beyond the borders of the United States and Canada. A new
international perspective is included with the additions of chapters dealing with issues
and programs from Ireland and Israel.
The Editors:
David K. Meagher David E. Balk
Professor Emeritus Professor
Brooklyn College, CUNY Brooklyn College, CUNY
October 1, 2012
ix
Certifications in Thanatology:
How the Handbook of Thanatology
Can Assist
The Association for Death Education and Counseling (ADEC) envisions a world in which
dying, death, and bereavement are recognized as fundamental and significant aspects
of the human experience. The association, ever committed to being on the forefront
of thanatology (the study of death and dying), provides a home for professionals
from diverse backgrounds to advance the body of knowledge and promote practical
applications of research and theory. In addition, ADEC offers a two-level certification
program for thanatology professionals. This program protects the public by creating a
standard for thanatology practice while helping professionals develop and demonstrate
their mastery of knowledge of thanatology and thanatology-related issues.
ADEC offers Certification in Thanatology (CT) and Fellow in Thanatology (FT), the
details of which can be found at http://www.adec.org. Certification in Thanatology
is a foundation certification that enhances the professional designation established by
the academic discipline of each certificate holder. It recognizes the specific educational
background in dying, death, and bereavement. Thus, a counselor/therapist or educator is
defined by his/her education and work experience. The certification will note the special
educational training in the field. The Fellow in Thanatology certification is an advanced
professional certification for thanatology professionals. It recognizes practitioners and
educators in the discipline of death, dying, and bereavement who have met specified
knowledge requirements measured through a standardized testing process, and who
demonstrate advanced levels of competency in teaching, research, and/or clinical practice
through a professional portfolio. Recipients of ADEC certification are required to undergo
the recertification process every 3 years.
This Handbook of Thanatology emerged as ADEC members serving on the Creden-
tialing Council, the Body of Knowledge Committee, and the Test Committee reflected on
efforts to put into operation a reliable and valid exam measuring knowledge considered
foundational to thanatology. The structure of this handbook comes directly from the in-
x Handbook of Thanatology
spired efforts of the Body of Knowledge Committee, chaired by Carol Wogrin, in a 2005
two-day winter meeting during which six categories considered fundamental to thanatol-
ogy were identified. They are:
Category Definitions
Dying: the physical, behavioral, cognitive, and emotional experience of living with life
threatening/life limiting illness, caring for the terminally ill, the dying process, and the
experience of death
End-of-Life Decision Making: the medical, legal, ethical and interpersonal choices,
decisions and behaviors of individuals, families and professionals as life nears its end, that
are often associated with a terminal illness
Loss, Grief and Mourning: the physical, behavioral, cognitive, and emotional experience
of and reactions to loss, the grief process, as well as rituals and practices surrounding grief
Assessment and Intervention: information gathered, decisions made, and actions taken
by professional caregivers to determine and/or provide for the needs of persons who are
dying, their loved ones, and bereaved individuals
Traumatic Death: a death that occurs in a manner that is unanticipated, shocking, or
violent; may be inflicted, self-inflicted or unintentional
Death Education: formal and informal methods for acquiring and disseminating knowledge
about dying, death, and bereavement
Indicator Descriptors
Cultural/Socialization concerns the effect of diverse cultural and social influences on the
experience of death and loss.
Religious/Spiritual addresses the relationship that religious and spiritual belief systems
have on the reaction to and coping with dying and bereavement.
Professional Issues deal with the factors that affect professionals’ training, abilities and
responsibilities in providing care to persons who are dying or bereaved.
Historical Perspective views the historical context, developments, and theoretical para-
digms that influenced the death experience and in the development of the field of thana-
tology.
Contemporary Perspective provides the theoretical perspective, factual context and other
factors which have influenced the current perspectives on the death experience and the
field of thanatology.
Life Span considers the developmental perspectives on death and dying from the prenatal
period to old age.
Certifications in Thanatology: How the Handbook of Thanatology Can Assist xi
Institutional/Societal relate to the social organizations and institutions beyond the indi-
vidual and family that affect the experience of dying, death, and bereavement.
Family and Individual addresses the social, cognitive, physical, interpersonal, and emo-
tional encounters, theories and interpretations of dying, death, and bereavement from
the standpoint of one’s position within the group of people sharing a relational bond,
commitment and who define themselves as family.
Resources and Research involves materials, organizations and groups of individuals who
study and facilitate the acquisition of knowledge. Moreover, resources involve the ideas
and materials based upon the findings of empirical research and theoretical synthesis that
add to the knowledge base of thanatology.
Ethical/Legal pertains to the aspects of dying, death or bereavement that concerns the
principles of justice, fairness, and the determination of ethically appropriate options. Legal
issues refer to the articulated laws of a society that pertain to thanatology.
The six categories and ten indicators form the Body of Knowledge (BOK) Matrix
reproduced on the next two pages. The BOK Matrix is copyrighted by the Association for
Death Education and Counseling. The examples in the various cells of the BOK Matrix
are illustrative of topics considered probable when categories and indicators intersect.
For instance, in the cell with the category Traumatic Death and the indicator Religion
and Spirituality, you will see the illustrative examples of “meaning reconstruction” and
“rituals.” The topics in the BOK Matrix presented below are not considered exhaustive.
As early as July 2003 the Test Committee floated a proposal that ADEC commission
its own book on the material considered foundational knowledge in thanatology. After
much discussion the current structure for the book got strong endorsement: to write
separate chapters using a category-by-indicators focus. Thus, there would be a chapter
on culture, socialization, and dying; one on religion, spirituality, and dying; and so forth
through all the categories and indicators within the BOK Matrix. After some reflection,
the editors decided two indicators (professional issues, resources and research) deserved
more treatment that would cut across BOK categories (in contrast to the other chapters
that focus on a BOK category by a specific indicator).
What you have in your hands is the product of those efforts. For those interested
in thanatology certification, this book is a must-read and will continue to be a valuable
resource for your practice.
xii
Body of Knowledge (BOK) Matrix
Indicators
Categories Cultural/ Religious/ Professional Historical Contemporary Life Span Institutional/ Family and Resources and Ethical/ Legal
Socialization Spiritual Issues Perspectives Perspectives Societal Individual Research
Dying perspectives facing death, self care, hospice, causes global causes normative hospice, gender roles, current allocation of
on dying, rituals, boundaries, and patterns and patterns developmental palliative communication, significant resources,
health care meaning, compassion of death in of death and tasks, care, impact cultural impact research ethical
interactions, suffering, fatigue, Western societ- lifestyle choices, developmental of politics, on family findings, principles,
family roles impact on burnout, ies, influential gender issues, concepts of interacting with roles, family organizations legislation/
treatment attitudes theories impact of death, special the health care history, coping and journals, medical practice
decisions, toward dying technology, populations system, special strategies media and
afterlife, influential populations internet
legacies theories, death
attitudes, role
of complemen-
tary/alternative
therapies
End-of-Life advance care advance care communication, landmark legal options and impact of age advance care advance care media and principles
Decision planning, ethnic planning, understanding cases, attitudes choices, impact on decision planning, planning, Internet, of medical
Making issues, values values and patient’s rights toward final of medical making, health care treatment professional ethics, advance
and attitudes, attitudes, disposition, technology, determining legislation, decisions, organizations, directives,
gender beliefs and evolution of impact of competency to public/mass communication, current landmark cases,
doctrines, advance care media and make decisions media and family systems significant legal planning,
suffering, planning Internet political impact research decision making
sanctity of life, on decision- findings processes
quality of life making
Loss, factors affecting meaning burnout, influential influential impact of media and family life cycle, empirical ethics and
Grief, and experience of making, impact compassion theories, theories developmental Internet, communication, research working with
Mourning and expression on mourning fatigue, post-death and models, stage on loss school/ impact of illness on current the bereaved,
of grief, impact practices awareness of activities post-death experience, workplace grief, trajectory, theories, legal aspects of
on mourning personal loss practices, media specific types of public deaths, grief styles, research on death
practices history, coping and Internet, loss and impact political systems normative grief effectiveness of
strategies, self intervention on grief and responses, intervention
assessment, strategies mourning impact of type
self care, of loss
boundaries,
clinical
competency
©Association for Death Education and Counseling® The Thanatology Association®

Assessment advance care components appropriate changes in current developmental impact of death family systems evidence of determination
and planning, of spiritual components of determination assessment considerations system, impact theory, effectiveness of of death,
Intervention cultural assessment, assessments, of death, models, current of societal gender issues, assessment and informed
competence, interventions, communication, intervention therapeutic infrastructure, assessment of intervention, consent, ethical
communication, facilitating professional theories prior to strategies, contributions risk factors for community principles, legal
meaning of integration of liability and 1990 controversy of grief support complicated/ programs parameters
death meaning and limitations, about services prolonged grief, around death,
value of one’s determining efficacy of determining professional
life appropriate interventions, appropriateness responsibilities
interventions complicated of specific
in concert grief, gender interventions
with evidence considerations,
and client pathologizing
characteristics, of grief
professional
responsibilities
Traumatic cause of death, meaning appropriate previous major recent/ death patterns, meaning impact on major national criminal justice
Death meaning making, rituals, training, traumatic anticipated issues specific making, role experience of organizations, system, impact
making, impact of professional occurances future traumatic to each of the media grief, types current on larger
advance care religion response, occurrences, developmental and Internet, of traumatic significant society, ethical
planning, ethnic commemora- impact of phase infrastructure, deaths, coping research intervention
issues, values tive activities, communication types of strategies, findings issues
and attitudes, vicarious systems, organ traumatic individual
gender traumatization and tissue deaths, impact differences,
donation, on specific vicarious
current populations traumatization,
approaches social support
Death different death diversity of evalulation of attitudes advance care teaching influence of formal, informal types of impact of
Education systems, diverse religious beliefs, knowledge, towards death, planning, across the life media and resources, legal system
views about diversity of criteria for history of influence of cycle, issues Internet, varied understanding on death,
death meaning an effective thanatology media and specific to each educational the research, understanding
making, educator, as a discipline, the Internet, developmental settings, importance a professional
diversity of methods, historical eras social concerns, phase, impact of of evidence- code of ethics,
spirituality training specific components impact of life larger systems, based practice, applying prin-
to parameters of death transitions military certification, ciples of ethics
of practice, education professional
media and organizations
Internet
xiii
©Association for Death Education and Counseling® The Thanatology Association®

xv
List of Contributors
David E. Balk is a professor in the Department of Health and Nutrition Sciences at Brooklyn
College where he directs graduate studies in thanatology. He wrote Helping the Bereaved
College Student, which Springer Publishing Co. published in 2011. He was editor-in-chief
of the first edition of ADEC’s 2007 publication Handbook of Thanatology: The Essential
Body of Knowledge for the Study of Death, Dying, and Bereavement.
Melissa M. Bell, PhD, LSW, is a professor of social work at Chatham University,

Pittsburgh, PA, where she also coordinates the social work field placement program. After
completing a post-MSW fellowship in clinical services at Yale University, she received her
doctorate in social work and doctorate certificate in women’s studies from the University
of Pittsburgh. Prior to her academic career, she was a psychiatric social worker at a large
psychiatric hospital and in private practice. She has presented at the ADEC/International
Conference on Grief and Bereavement in Contemporary Society.
Corinne Cavuoti graduated with a master’s degree in community health with a

concentration in thanatology from Brooklyn College in Brooklyn, NY. Her thesis was titled
“Do elderly nursing home residents experience disenfranchised grief?” She previously
worked as a patient facilitator, counseling patients experiencing loss at a women’s clinic in
New York City. She is currently facilitating bereavement groups and developing an online
support program for adolescents dealing with loss and bereavement.
Stephen R. Connor, PhD, is an international palliative care consultant and senior fellow
to the London-based Worldwide Palliative Care Alliance (WPCA), an alliance of national
and regional hospice and palliative care organizations globally. Connor has worked
continuously in the hospice/palliative care movement since 1976, as the CEO of four
U.S. hospice programs and as vice president of the U.S. National Hospice and Palliative
Care Organization, 1998-2008. In addition to being a hospice and association executive,
Connor is a researcher and psychotherapist, licensed as a clinical psychologist in two U.S.
states. Connor is focused on palliative care development internationally with WPCA and
as a consultant to the Open Society Foundation’s International Palliative Care Initiative in
New York. He also serves as research director for Capital Caring in the Washington, DC,
area. He has published more than 75 peer-reviewed journal articles, reviews, and book
chapters on issues related to palliative care for patients and their families and is the author
of Hospice: Practice, Pitfalls, and Promise (1998) and Hospice and Palliative Care: The
Essential Guide (2009).
xvi Handbook of Thanatology
Alicia Skinner Cook, PhD, is a licensed psychologist and professor emeritus in the
Department of Human Development and Family Studies at Colorado State University.
Cook’s scholarly work has focused on families and grief and the ethics of conducting
bereavement research. She has published more than 45 articles and four books and has
been a visiting scholar at the Hastings Center for Biomedical Ethics. She has developed and
taught courses on death, dying, and grief at both the undergraduate and graduate level
and written a book for grief counselors, Helping the Bereaved: Therapeutic Interventions
for Children, Adolescents, and Adults (coauthored with Daniel Dworkin).
Charles A. Corr, PhD, is a member of the Association for Death Education and Counseling,
the International Work Group on Death, Dying, and Bereavement (Chairperson, 1989-
1993), the board of directors, The Hospice Institute of the Florida Suncoast, and the
Executive Committee of the National Donor Family Council. Corr is also co-editor of a
quarterly e-newsletter sponsored by the CHiPPS (Children’s Project on Palliative/Hospice
Services) project of the National Hospice and Palliative Care Organization; professor
emeritus, Southern Illinois University, Edwardsville; and an adjunct faculty member at
King’s University College of the University of Western Ontario.
Donna M. Corr, RN, MS, took early retirement as professor of nursing, St. Louis Community
College at Forest Park. With her husband Charles, the Corrs’ publications include 40 books
and booklets, along with more than 100 articles and chapters in professional journals in
the field of death, dying, and bereavement. Their most recent book is the seventh edition
of Death & Dying, Life & Living (Belmont, CA: Wadsworth, 2013).
Gerry R. Cox, PhD, is a professor emeritus of sociology at University of Wisconsin-La

Crosse. He is the director of the Center for Death Education and Bioethics. His teaching
focused upon theory/theory construction, deviance and criminology, death and dying,
social psychology, and minority peoples. He has been publishing materials since 1973 in
sociology and teaching-oriented professional journals. He is a member of the International
Work Group on Dying, Death, and Bereavement, the Midwest Sociological Society, the
American Sociological Association, the International Sociological Association, Phi Kappa
Phi, the Great Plains Sociological Society, and the Association for Death Education and
Counseling. He serves on the board of directors of the National Prison Hospice Association.
David A. Crenshaw, PhD, is clinical director of the Children’s Home of Poughkeepsie

in New York. He is a board certified clinical psychologist, a fellow of the American
Psychological Association, a fellow in the Division of Child and Adolescent Psychology of
APA, and a faculty associate of Johns Hopkins University. Crenshaw is past president of
the New York Association for Play Therapy.
Illene Noppe Cupit, PhD, a graduate of Temple University, is professor of human

development at the University of Wisconsin-Green Bay. She developed the Dying, Death
and Loss course on her campus more than twenty years ago. Cupit’s research focuses
List of Contributors xvii
on college student bereavement, adolescent grief, death education, and developmental

issues. Cupit recently co-edited a book with Carla Sofka and Kathy Gilbert entitled, Dying,
Death and Grief in an Online Universe (Springer Publishers, 2012). She also founded
Camp Lloyd, a day camp for grieving children. She is the president of the Association for
Death Education and Counseling for 2012-2013.
Lynne Ann DeSpelder, MA, an author, counselor, and a professor of psychology at Cabrillo
College in Aptos, CA, holds a Fellow in Thanatology (FT) from the Association for Death
Education and Counseling. She conducts trainings and speaks about death, dying, and
bereavement both nationally and internationally, recently in Italy, England, and Japan.
DeSpelder is on the international editorial board of the journal Mortality. Together with
Albert Lee Strickland, she is coauthor of The Last Dance: Encountering Death and Dying,
a college textbook first published in 1983 and currently in its ninth edition, and co-editor
of The Path Ahead: Readings in Death and Dying. They were recipients of the ADEC
Death Education Award in 2003 for contributions to the field. DeSpelder and Strickland
are members of the International Work Group on Death, Dying, and Bereavement (IWG)
and are life members of ADEC.
Kenneth J. Doka, PhD, is a professor of gerontology at the graduate school of The

College of New Rochelle and senior consultant to the Hospice Foundation of America. A
prolific author, Doka has written or edited 30 books and more than 100 articles and book
chapters. Doka is editor of both Omega: The Journal of Death and Dying and Journeys:
A Newsletter to Help in Bereavement. Doka was elected president of the Association
for Death Education and Counseling in 1993. In 1995, he was elected to the board of
directors of the International Work Group on Dying, Death, and Bereavement and served
as chair from 1997-1999. The Association for Death Education and Counseling presented
him with an Award for Outstanding Contributions in the Field of Death Education in
1998. He is a licensed mental health counselor and ordained Lutheran clergyman.
Dolores M. Dooley, PhD, retired after 30 years, from the Philosophy Department at the
National University of Ireland in Cork in 2005. During her tenure there she developed
the required ethics course for medical students and, in the 1990s and thereafter, she
collaborated in the development of ethics courses for the School of Nursing and Midwifery.
She now lives in Dublin and lectures part time on health care ethics and law at the Royal
College of Surgeons in Ireland. Her publications include Ethics of New Reproductive
Technologies (2003) and Nursing Ethics: Irish Cases and Concerns (2nd ed., 2012). She
contributed ethics modules for End of Life Care: Ethics and Law (2011), an educational
resource funded by the Irish Hospice Foundation aiming to improve the culture of care
and organization of dying, death, and bereavement in Irish hospitals.
Kathleen R. Gilbert is the executive associate dean of the School of Public Health and
professor of Applied Health Science at Indiana University-Bloomington. She received
her doctorate from Purdue University and is an ADEC Fellow in Thanatology (FT). She
xviii Handbook of Thanatology
is a former president of ADEC. She is a member and former member of the board of
the International Work Group on Death, Dying, and Bereavement. She has published
and presented on her research interests: loss and grieving in the context of family, loss
and meaning making, stress and resilience in the family, cross-national research, and the
Internet as a tool for death education. She has taught an online course on grief in a family
context, as well as other courses on interpretive qualitative research, families, stress and
resilience in the family, theory, and family life education.
Richard B. Gilbert, PhD, DMin, CT, has been an active member of the Association for
Death Education and Counseling since the early 1980s. He has served in many posts,
including the board, certification chair, co-chair of the conference in Albuquerque, and a
frequent presenter. He was awarded the ADEC Distinguished Service Award at the Miami
conference (2011). He retired from hospital chaplaincy and related ministries in 2007.
He continues speaking, teaching, and writing. A new edition of his book, Heartpeace
(Centering) was just released, and, in press with Baywood, Living and Loss: The Interplay
of Intimacy, Sexuality and Grief, co-edited with Brad DeFord. Two other books are in the
formative stage.
Madeline Jacobs, MPA, teaches health and medical dilemmas at the graduate program
in thanatology at Brooklyn College, City University of New York. She has extensive
experience developing and evaluating programs in palliative, community, and transitional
care for seniors and other at-risk populations living in the community.
John R. Jordan, PhD, is a licensed psychologist in private practice in Pawtucket, RI, where
he has specialized in work with survivors of suicide and other traumatic losses for more
than 30 years. He is the clinical consultant for Grief Support Services of the Samaritans
in Boston, MA, and the professional advisor to the Survivor Council of the American
Foundation for Suicide Prevention (AFSP). For over 25 years, Jordan has provided training
nationally and internationally for professional caregivers and has helped to lead many
healing workshops for suicide survivors. Jordan has published more than 35 clinical and
research articles, chapters, and full books in the areas of bereavement after suicide,
support group models, the integration of research and practice in thanatology, and loss in
family and larger social systems. He is the co-author of three books: After Suicide Loss:
Coping with Your Grief; Grief After Suicide: Coping with the Consequences and Caring
for the Survivors (Routledge, 2011), and the recently published Devastating Losses: How
Parents Cope With the Death of a Child to Suicide or Drugs (Springer, 2012).
Jeffrey Kauffman is a psychotherapist in private practice in suburban Philadelphia. He

is the author of Helping Persons With Mental Retardation Mourn and the editor of
Awareness of Mortality, Loss of the Assumptive World and The Shame of Death, Grief
and Trauma, as well as numerous articles on grief and traumatic loss. His interest in the
problem of shame has become a central concern and has led to his writing the following
List of Contributors xix
articles: “The Primacy of Shame, Making Sense of Being Human” and “(Exposure) In The
Eyes Of The Other, On The Primacy Of Shame and the Nature Of God.” He has taught
at Bryn Mawr College, Widener University, and online for King’s University College of the
University of Western Ontario. He is a Fellow in Thanatology and has been a member of
the Association for Death Education and Counseling since 1986.
Dennis Klass, PhD, is a professor emeritus living on Cape Cod. He earned a doctorate
from University of Chicago where began his work in thanatology as an assistant in
Elisabeth Kübler-Ross’ famous seminar. He is on the editorial boards of Death Studies and
Omega, Journal of Death and Dying. Klass was the professional advisor to the St. Louis
Chapter of Bereaved Parents for more than twenty years. In that role he did a long-term
ethnographic study of parental bereavement. Over the last two decades Klass has turned
his research toward the cross-cultural study of grief. He is the author of The Spiritual Lives
of Bereaved Parents (Brunner/Mazel, 1999) and Parental Grief: Resolution and Solace
(Springer, 1988). He is the coauthor of Dead but not Lost: Grief Narratives in Religious
Traditions (AltaMira, 2005) and co-editor of Continuing Bonds: New Understandings of
Grief (Taylor Francis, 1996). He has written more than 50 articles or book chapters.
Karolina Krysinska, PhD, is a research psychologist working at the KU Leuven - University

of Leuven in Belgium. Her research interests include risk and protective factors in suicide,
suicide prevention, thanatology, psychology of trauma, and psychology of religion. She is
an author and co-author of book chapters and peer-reviewed articles on different aspects
of suicide, trauma, and Bereavement.
Marcia Lattanzi-Licht is a psychotherapist and educator and co-founder of HospiceCare,

Boulder, CO (1976). Lattanzi-Licht’s numerous publications include The Hospice Choice
and Coping with Public Tragedy. An internationally known educator, she was awarded
an honorary doctorate in recognition of her body of work (University of Colorado,
2005), the 1984 Winston Churchill Traveling Fellowship, the 2002 ADEC Educator
Award, and NHPCO’s 1995 Heart of Hospice. She received the Boulder County District
Attorney’s highest award in 1988, the Distinguished Service Award, for her work with
victims of crime.
David Lester, PhD, has doctorates from Brandeis University (in psychology) and
Cambridge University (in social and political science) and is distinguished professor of
psychology at the Richard Stockton College of New Jersey. He has written extensively on
suicide, murder, life-after-death, and the fear of death.
Ruth Malkinson, PhD, is director of training at the International Center for the Study
of Loss, Bereavement and Human Resilience at the University of Haifa. She is the
director of the Israeli Center of REBT (Rational Emotive Behavior Therapy). Malkinson
is internationally recognized for her expertise in cognitive grief therapy, family therapy,
and social work. She has published numerous articles and chapters in these areas. Her
xx Handbook of Thanatology
book Cognitive Grief Therapy: Constructing a Rational Meaning to Life Following Loss
was published in 2007 by Norton. With her colleagues S.S. Rubin and E. Witztum, she
wrote Working with the Bereaved: Multiple Lenses on Loss and Mourning. In addition to
numerous articles and chapters, they published Loss and Bereavement in Israel in 1993 and
Traumatic and Nontraumatic Loss and Bereavement: Clinical Theory and Practice in 2000.
Jennifer L. Matheson, PhD, LMFT, is an associate professor in the Department of Human

Development and Family Studies at Colorado State University. She has both a master’s
and doctoral degree in marriage, and family therapy (MFT) from Virginia Tech and a
master’s in sociology from George Mason University. Matheson is the director of the
Center for Family and Couple Therapy at CSU and an award-winning teacher in the MFT
master’s program. Her current research centers around substance abuse treatment on
college campuses where she has received funding through the National Institutes of Drug
Abuse (NIDA). Clinically, she is a licensed MFT, an AAMFT Clinical Fellow, and an AAMFT
Approved Supervisor. Her clinical expertise revolves around grief and loss, adolescent and
family substance abuse treatment, and family play therapy.
David K. Meagher, EdD, CT, professor emeritus, Brooklyn College-CUNY, is the founder
of its Thanatology Graduate Studies Program at Brooklyn College. He has served on the
advisory boards of two hospice programs and ElderPlans’ Widowed Support Service in
New York. A recipient of ADEC’s 2004 Death Educator Award, David is a past president
of ADEC. He has also served as consultant to the Office of the Medical Examiner of
Suffolk County, NY, the Floating Hospital of NY, the NFDA, and the NYC Department
of Education. He is the author of Zach and His Dog: A Story of Bonding, Love, and Loss
for Children and Adults to Share Together. Meagher was an associate editor of the first
edition of the Handbook of Thanatology and is the coeditor of the second edition.
Robyn L. Mowery is a licensed marriage and family therapist. She has established a
program of research in medical family therapy focused on family decision making
regarding end-of-life and palliative care.
Colleen I. Murray is director of the Interdisciplinary Social Psychology doctorate program

and professor of Sociology at the University of Nevada, Reno. She received her doctorate
from The Ohio State University and is an ADEC Fellow in Thanatology. She serves as chair
of the Grief Focus Group of the National Council on Family Relations. Her research involves
the intersection of justice and health, including the application of theory to loss; grief of
adolescents and families; the coexistence of post-traumatic stress and post-traumatic
growth in bereaved parents’ narratives and in the music of Hurricane Katrina; and cross-
cultural media accounts, attributions, and social construction of mass tragedies involving
youth. She has more than 70 contributions to publications such as Family Relations, Journal
of Applied Social Psychology, and Journal of Social and Personal Relationships. Murray
teaches courses in research methods, families, adolescence, health, theories, and loss.
List of Contributors xxi
Blair Sumner Mynatt, MS, NCC, is a doctoral candidate in counselor education at the
University of Tennessee. While a student, she obtained graduate certificates in qualitative
research in educational settings; evaluation, statistics, and measurement; and gerontology.
As part of her gerontology certificate, she completed over 600 clinical hours in the hospice
and assisted-living settings. Her clinical experience includes grief work with adults and
children (and their families) with intellectual disabilities and autism. She also has extensive
experience working with children with grief issues in the school setting. Blair completed
a LEND/UCEED traineeship with the University of Tennessee College of Medicine Boling
Center for Developmental Disabilities. Blair is an active conference presenter and received
numerous leadership awards while a student. She served as the student representative on
the American Counseling Association Governing Council and was selected as a Chi Sigma
Iota International Honor Society Leadership Intern.
Robert A. Neimeyer, PhD, is professor in the Department of Psychology, University of

Memphis, where he also maintains an active clinical practice. Since completing his doctoral
training at the University of Nebraska in 1982, he has published 25 books, including
Techniques of Grief Therapy: Creative Practices for Counseling the Bereaved and Grief
and Bereavement in Contemporary Society: Bridging Research and Practice (both with
Routledge), and serves as editor of the journal Death Studies. The author of nearly 400
articles and book chapters, he is currently working to advance a more adequate theory
of grieving as a meaning-making process, both in his published work and through his
frequent professional workshops for national and international audiences. Neimeyer
served as a member of the American Psychological Association’s Task Force on End-of-
Life Issues and chair of the International Work Group for Death, Dying, and Bereavement.
In recognition of his scholarly contributions, he has been granted the Eminent Faculty
Award by the University of Memphis, made a fellow of the Clinical Psychology Division of
the American Psychological Association, and given the Research Recognition and Clinical
Practice Awards by the Association for Death Education and Counseling.
Kevin Ann Oltjenbruns, PhD, was a long-time faculty member (31 years) in the Department
of Human Development and Family Studies at Colorado State University where she served
as vice provost for undergraduate studies for 3 years prior to her retirement in June 2005.
She served in many other administrative roles at the university, including serving as the
associate dean in the College of Applied Human Sciences. Currently, she is serving as a
codirector of the Osher Lifelong Learning Institute through the Division of Continuing
Education at Colorado State University. Oltjenbruns’s research and teaching focus was
in the area of grief and loss. She co-authored a textbook entitled Dying and Grieving:
Lifespan and Family Perspectives and also wrote numerous articles and chapters, focusing
primarily on various issues related to developmental stages and grief. In addition to many
other community volunteer activities over the years, Oltjenbruns has been involved with
Hospice of Larimer County (in Northern Colorado) and is a frequent guest speaker on
topics related to grief. Oltjenbruns served as the editor of ADEC’s The Forum newsletter
for 3 years and was honored as ADEC’s Death Educator of the Year in 2006.
xxii Handbook of Thanatology
Robin Paletti earned a master’s in special education from the City University of New York
at Queens College. She teaches high school in New York City with a special focus on crisis
intervention and bereavement.
Jackson P. Rainer, PhD, ABPP, is a board certified psychologist licensed to practice in

Georgia and North Carolina. He is currently the department head of Psychology and
Counseling at Valdosta State University, Valdosta, GA. Rainer is known and respected
in the professional community, having taught, researched, and supervised in the areas
of counseling and psychotherapy, ethics, death and dying, bereavement, and crisis
intervention. He is on the editorial board of seven psychotherapy journals and has written
extensively on the topics of crisis intervention and systemic response to grief. He is a
consultant to the American Academy of Bereavement and the CMI Education Institute.
Lillian M. Range, PhD, is professor of counseling and behavioral science, Our Lady of Holy
Cross College, and professor emerita, The University of Southern Mississippi. Her research
interests are suicide prevention and health promotion. Fellow, American Psychological
Association, and past president, Southeastern Psychological Association, she is associate
editor of Death Studies. Publications include Sex Roles, Nursing Ethics, Health Promotion
Practice, Violence and Victims, Journal of Psychopathology and Behavioral Assessment.
Paul C. Rosenblatt, PhD, is Morse-Alumni Distinguished Teaching Professor of Family

Social Science emeritus at the University of Minnesota. He is author of Parent Grief:
Narratives of Loss and Relationship (Routledge), Help Your Marriage Survive the Death
of a Child (Temple University Press), and African-American Grief (co-authored with
Beverly R. Wallace, published by Routledge). His current projects include an analysis of
the concept of complicated grief in crosscultural perspective, an essay (with Elizabeth
Wieling) on the links of grieving and trauma in the context of poor urban families in
Brazil, an article on grief therapy in crosscultural perspective, and an article on how grief
interventions in the western world might be different if they were based on premises of
death and grief drawn from other cultures.
Ester Shapiro, PhD, (aka Ester Rebeca Shapiro Rok) is associate professor of psychology,
University of Massachusetts and research associate, Gaston Institute for Latino Research
and Public Policy. A Cuban Jewish Eastern European immigrant, she is committed to
helping all families make the most of their opportunities for improving life chances
even when facing adversity, death, and loss. Her teaching, research, and practice apply
cultural and ecosystemic approaches to understanding and facilitating positive outcomes
during family life cycle transitions by reducing stressors and mobilizing resources
linking individual, family, and social/community change. She wrote Grief as a Family
Process: A Developmental Approach to Clinical Practice (Guilford, 1994), is completing
Promoting Grief and Growth: Family and Cultural Contexts in Bereavement Care, and
was coordinating editor of Nuestros Cuerpos Nuestras Vidas (Seven Stories 2000),
the Spanish transcultural adaptation of Our Bodies, Ourselves. She has published and
List of Contributors xxiii
presented extensively on a sociocultural model of family development, family and culture

in bereavement care, participatory research promoting health and educational equity,
and designing and evaluating interventions that build resilience among urban, diverse
children, adolescents, adults, and families.
Simon Shimshon Rubin, PhD, is chair of the clinical psychology program and professor
of psychology at the University of Haifa in Israel. He is founder and director of the
International Center for the Study of Loss, Bereavement and Human Resilience at the
University of Haifa. Previously, he directed the postgraduate program in psychotherapy
there. Rubin has lectured and published extensively nationally and internationally on
matters related to bereavement, ethics, and psychotherapy. His work addresses the
applied, clinical, research, and theoretical aspects of these fields. His most recent book,
Working with the Bereaved: Multiple Lenses on Loss and Mourning, was written with
R. Malkinson and E. Witztum and was published in 2012 by Routledge. Previously, they
published Loss and Bereavement in Israel in 1993 and Traumatic and Nontraumatic Loss
and Bereavement: Clinical Theory and Practice in 2000.
Anne M. Smith, MA, received her master’s in community health, thanatology from
Brooklyn College, CUNY. She has been working in the field of hospice and bereavement
for the past 15 years. In addition to her work as a bereavement counselor at an inpatient
hospice, she is currently facilitating bereavement groups at a local hospital and teaching a
thanatology course at Ramapo College of New Jersey. She also works with her husband,
a veterinarian, to support and educate clients regarding end-of-life issues for pets and
pet bereavement.
Carla J. Sofka, PhD, MSW, is an associate professor of social work at Siena College in
Loudonville, NY. Drawing upon her clinical experience in medical, psychiatric, and hospice
settings, she teaches courses on social work practice. In addition to teaching the research
methods course, she also teaches elective courses on death and dying and death in
popular culture. Sofka recently co-edited Dying, Death, and Grief in an Online Universe,
a book describing how thanatechnology serves as a resource for death education and
grief counseling. Additional research has focused on how museums serve as healing
spaces for coping with tragedy and thanatology-related themes in young adult literature.
Sofka served as president of the Association for Death Education and Counseling from
2010 to 2011. She has written the News and Notes column in Death Studies and has
served as an associate editor for this journal since 1994.
Robert G. Stevenson is currently an associate professor in the Counseling Program of the

School of Social and Behavioral Sciences at Mercy College, NY. He has published more
than 60 journal articles and book chapters and edited/authored several books. Two of
his most recent publications are Perspectives on Violence and Violent Death and What
Will We Do? Preparing a School Community to Cope With Crises. His degrees include
a bachelor’s (College of the Holy Cross), master’s (Montclair State University), and both
xxiv Handbook of Thanatology
MAT and EdD (Fairleigh Dickinson University). He developed the first independent course
on death education at the high school level and taught it for 25 years. He is a member
of the International Work Group on Death, Dying and Bereavement and the Association
for Death Education and Counseling. He has served ADEC on its board of directors, as
chairman of the Education Institute and on the board of certification review. He received
the 1997 Wendel Williams Outstanding Educator Award and the 1993 ADEC National
Death Educator Award for his contributions to those fields. For service during the New
York Guard activation in Manhattan after September 11, 2001, he was awarded the New
York State Defense of Liberty medal. He co-founded a community grief support center
(Jamie Schuman Center) in Hillsdale, NJ. After retiring from secondary school teaching,
he worked as a counselor in Paterson, NJ in a program he helped to develop for parolees
reentering society from state prisons and with adolescents in recovery from addiction.
Albert Lee Strickland, CT, is a writer and musician. He is a past editor of ADEC’s The
Forum newsletter, received ADEC’s Service Award in 1989, and was elected to two
terms on ADEC’s Leadership Recruitment and Development Committee. His musical
presentations centering on themes of loss and death in American blues and gospel
music include performances in Australia, Germany, Hong Kong, Canada, Italy, and the
United States. Together with Lynne Ann DeSpelder, he is coauthor of The Last Dance:
Encountering Death and Dying, a college textbook first published in 1983 and currently
in its ninth edition, and co-editor of The Path Ahead: Readings in Death and Dying. They
were recipients of the ADEC Death Education Award in 2003 for contributions to the
field. DeSpelder and Strickland are members of the International Work Group on Death,
Dying, and Bereavement (IWG) and both are life members of ADEC.
Gordon Thornton, PhD, FT, is an emeritus professor of psychology at Indiana University of

Pennsylvania where he has taught a course in the psychology of death and dying since 1975.
He is a certified as a Fellow in Thanatology (FT) from the Association for Death Education
and Counseling (ADEC). He is a former president of ADEC and chair of the Credentialing
Council. He has given presentations on a variety of topics in the area of dying, death, and
bereavement and has contributed articles to Death Studies and The Forum.
Mary Alice Varga is an assistant professor in the Department of Educational Technology

and Foundations at the University of West Georgia in Carrollton, GA. She is also a doctoral
candidate in educational psychology and counseling at the University of Tennessee in
Knoxville, TN, where she served as a graduate research assistant for the Grief Outreach
Initiative in the College of Education, Health, and Human Sciences. She is also an active
member of the Association for Death Education and Counseling. Her research interests
include grief among college students and grieving in online communities.
Andrea C. Walker, PhD, is a specialist in family studies and has focused her research
on death and dying in various cultural and religious contexts and across the life span.
Specifically, she has studied bereavement, grieving, and spirituality/religiosity in the
List of Contributors xxv
Muscogee Creek tribe and with undergraduate college students. Her doctorate is in
human development and family studies, and she holds a license as an alcohol and drug
counselor in the state of Oklahoma. She is part of the psychology faculty at Oral Roberts
University in Tulsa, OK.
James L. Werth, Jr., PhD, is a professor of psychology and director of the Doctor of
Psychology (Psy.D.) Program in Counseling Psychology at Radford University. His
published work is primarily focused on end-of-life issues, ethics, suicide, and HIV disease.
His recent books are Duty to Protect (2008, American Psychological Association) and
Counseling Clients Near the End of Life (2012, Springer). He is the 2013 President of
the Clinical Emergencies and Crises Section of the Division of Clinical Psychology of the
American Psychological Association where his initiatives focus on rural suicide prevention,
foundational training on duty-to-protect issues, and incorporating education on clinical
emergencies and crises into doctoral psychology programs.
Eliezer Witztum, MD, is professor in the Division of Psychiatry, Faculty of Health

Sciences, at Ben-Gurion University of the Negev in Israel. Witztum is chairman of the
School of Psychotherapy at the Faculty of Health Sciences there. He serves as director
of Psychotherapy Supervision at the Mental Health Center, Beer Sheva, and as senior
consultant psychiatrist at the Community Mental Health Center of Ezrat Nashim Hospital
in Jerusalem. He has written more than 200 scientific publications and 15 books including
Social, Cultural and Clinical Aspects of the Ethiopian Immigrants in Israel published in
2012. Along with his colleagues S.S. Rubin and R. Malkinson, he wrote Working with
the Bereaved: Multiple Lenses on Loss and Mourning. In addition to numerous articles
and chapters, they published Loss and Bereavement in Israel in 1993 and Traumatic and
Nontraumatic Loss and Bereavement: Clinical Theory and Practice in 2000.
Carol Wogrin, PsyD, RN, FT, is the director of the National Center for Death Education,
Mount Ida College, and a Fulbright Scholar at Women’s University in Africa, Harare,
Zimbabwe. She is a licensed psychologist and registered nurse with a background in
acute care, home care, and hospice. She has been working with individuals and families
coping with illness and bereavement for over 30 years. An author and educator, she
serves on the board of directors of the International Work Group on Death, Dying and
Bereavement, and formerly served on ADEC’s board of directors. She is an associate
editor for the first edition of the Handbook of Thanatology, and in 2010 was given
ADEC’s Death Educator Award. She lectures internationally on the care of the dying, the
bereaved and the professionals who care for them.
Mary Lou Zanich, PhD, emeritus professor of psychology, was chair of the Psychology
Department at Indiana University of Pennsylvania and interim dean of the College of
Natural Sciences and Mathematics. She was a member of the board of directors and also
staff support facilitator for the local hospice. She co-instructed “Death in the Human
Experience,” published in The Forum, and presented at ADEC conferences.
1
Dying
Introduction to Part 1,
Chapters 1 – 6
Chapters 1 through 6 focus on dying. The Body of Knowledge

defined this major category of thanatology knowledge in this way:
the physical, psychosocial, and spiritual experience of facing death,
living with terminal illness, the dying process, and caring for the
terminally ill.
The six chapters of Part 1 focus on dying in terms of these indicators:

culture and socialization, religion and spirituality, historical and
contemporary perspectives, life span issues, the family and larger
systems, and ethical and legal issues. Five chapters were revised from
the chapters that appeared in the first edition, and in the case of
chapter 6, the contributor wrote a wholly new chapter.
3
Chapter 1
Culture, Socialization, and Dying

This chapter examines some cultural and social aspects related to persons who are dying
or closely approaching death, as well as the care they are offered. The challenge we face
is that there are myriad cultural and social variables that may affect dying in any histori-
cal and social situation because historical circumstances differ across time and in different
communities. Accordingly, societal death systems change in their responses to specific
challenges. More importantly, because dying is not the whole of anyone’s life, it is critical
to keep in mind that dying persons are living human beings. Dying is a special situation
in living; it cannot properly or fully be understood without taking account of the entirety
of a person’s life, both individually and within the social systems in which that person
is living.
Cultural Factors That Affect Dying
Every human being is born into and raised within a context in which cultural, social,
religious, and ethnic factors influence his or her life. As such, these variables, which we
subsume here under the broad heading of “cultural factors,” affect each individual’s
views of and interactions with dying and death. This cultural influence is true whether
the individual accepts or rejects the acculturation that he or she receives, since even in
rejection those cultural factors provide a benchmark against which the individual defines
and conducts his or her life.
One way to understand the various factors addressed in this section is to think of
culture as “a unified set of values, ideas, beliefs, and standards of behavior shared by
a group of people; it is the way a person accepts, orders, interprets, and understands
experiences throughout the life course” (Thomas, 2001, p. 40). Clearly, in the United
States and in most other countries, there are many, often quite diverse, cultural groups.
Coming to know something about those cultural groups helps to improve appreciation of
ourselves, other people, and our society as a whole.
For example, if we think for a moment about what we know concerning religious
4 Handbook of Thanatology
differences in beliefs, attitudes, and practices, we can easily recognize differences between
various Christian denominations, between orthodox and reform Jews, and between
Sunni and Shia Islamic groups. At the same time, it is all too easy to develop stereotypes
around religious and cultural differences. For example, we may perceive members of one
religious or cultural group as highly expressive and demonstrative in ways they face loss,
while others may be viewed as much more reserved and even stoic. This observation may
be true as a generalization about the group, but is it also true of every member of that
group? In other words, are we settling for superficial stereotypes in what we think about
cultural groups and their diverse members?
So our task is to be equally sensitive both to differences between cultural groups
and to diversity within those groups. For this reason, it is notoriously difficult to speak
in a general way about how cultural factors influence human beings and what results
they produce. What is needed is an effort to enter into specific cultural groups and see
how they address issues related to dying, an effort something like the one undertaken
by the editors of a five-volume series about Death and Bereavement Around the World
(Morgan, Laungani, & Palmer, 2002-2009). Our project in this chapter will inevitably be
on a much more limited scale.
In this chapter, we focus on selected examples of ways in which cultural factors bear
on experiences of dying. Among many possible examples, these include:
• Communication within family or cultural groups and between those groups and
outsiders
• Decision making within some family and cultural groups
• Issues about who should be primarily responsible for care of a dying person
• Distrust by members of cultural groups with regard to the larger social system, its
health care institutions, and some health care providers
Concerning communication, Thomas (2001, p. 42) has written that, “Communication
about end-of-life issues is the key to understanding and making rational decisions.”
Accordingly, there have been numerous reports that maintaining control over
communication is an important issue for many Asian Americans and some members of
other cultural groups (e.g., Doka & Tucci, 2009; Tanner, 1995; Tong & Spicer, 1994). For
example, members of such communities may be quite restrained in communicating to
health care providers what they are experiencing when they are in distress and dying.
Also, some family members may place a high priority on not telling dying persons that
they are dying. Health care providers who do not share such values or who lack cultural
sensitivity may become frustrated when they are caring for a dying person from such a
cultural group.
Closely related to attitudes associated with communication are those related to
decision making. Because patriarchal and hierarchical structures are prevalent in some
cultural groups, in such groups it is often the oldest male or at least an older member of
the family who is expected to make decisions about the care of dying family members
(Blackhall, Murphy, Frank, Michel, & Azen, 1995; Braun, Pietsch, & Blanchette, 2000).
Culture, Socialization, and Dying 5
To outsiders, this practice may appear to deny or at least infringe upon the autonomy of
the ill person.
Another significant issue in which cultural factors play an important role has to do
with who should care for a dying person. In contemporary American society, the provision
of such care is often primarily assigned to outsiders—to staff and volunteers in hospitals,
long-term care facilities, and hospice programs. Studies of certain Hispanic cultural groups
(e.g., Cox & Monk, 1993; Delgado & Tennstedt, 1997; Gelfand, Balcazar, Parzuchowski,
& Lenox, 2001), however, have noted that this role is primarily and insistently held within
the family and there most often assigned to female members.
Distrust has many causes and is often quite deep-seated. For example, among
African Americans some have traced it back to the general implications of slavery and
particularly to the Tuskegee study conducted by the United States Public Health Service.
Begun in 1932, the study initially offered the only known treatments at the time to poor
African-American sharecroppers in Alabama with syphilis. Tragically, participants were
eventually allowed to go untreated until they died in order to study the natural progress
of the disease. This research design occurred even after penicillin became available in the
mid-1940s and was shown to be effective in treating syphilis. The study was not halted
until it was exposed in the press in 1972 (Jones, 1992; Washington, 2006). More recent
reports have addressed ongoing racial injustice in health care (e.g., Freeman & Payne,
2000; Geiger, 2002). As a result, many African Americans believe the health care they
receive is less adequate than that offered to Caucasian Americans (Tschann, Kaufmann,
& Micco, 2003; Waters, 2001).
These issues affecting dying persons and care of the dying are intertwined with ways
in which individuals and members of groups in our society view the importance of family,
the role of religion, and the importance of being present at a death. They also influence
other matters, such as whether or not persons are willing to making advance plans for
end-of-life treatment, to consider opportunities for organ donation, or to take part in
physician-assisted suicide.
Death Anxiety and Concerns That Affect Dying
Much attention in recent years has been given to the concept of death anxiety and
its measurement (e.g., Neimeyer, 1994; Neimeyer, Wittkowski, & Moser, 2004). For
example, many reports suggest that women report higher death anxiety than men in
our society, while older adults appear to report less death anxiety than some younger
persons. It has also been argued that death anxiety is a complex concept, one that varies
with both demographic and personality factors, as well as with life accomplishments and
past or future regrets (Tomer & Eliason, 1996).
Further, death-related attitudes may reflect very different concerns and responses
such as those focused on:
• My own dying: Will it involve a long, difficult, painful, or undignified dying process,
especially in an alien institution under the care of strangers who might not respect
my personal needs or wishes—if so, I might wish that my dying would occur without
any form of distress or prior knowledge, and in my sleep, or perhaps I might take
deliberate action to prepare an advance directive or to seek out opportunities for
physician-assisted suicide (sometimes called “death with dignity” or “aid in dying;”
Corr, 2012), thereby hoping to avoid unacceptable ways of experiencing my dying;
by contrast, concerns about my own dying might lead me to wish to avoid a sudden,
unanticipated death, allowing time to address “unfinished business,” bid farewell to
loved ones (Byock, 2004), and “get ready to meet my Maker.”
• My own death: Will it release me from hardships and suffering, or will it involve los-
ing the life and everything it involves that has been and still is so important to me?
• What will happen to me after my death: Am I anxious about the unknown and fear-
ful of judgment or punishment after death, or am I anticipating a heavenly reward, a
passage to a better life, or a reunion with someone who had died earlier?
• The bereavement of someone I love: Am I mainly concerned about the burdens that
my illness and dying are placing upon those whom I love and/or am I worried about
what will happen to them after I am gone?
Dying in Our Social System: Once Upon a Time
In times past in the United States of America and in many other developed countries
around the world, what Glaser and Strauss (1968) identified as dying trajectories were
relatively brief and largely predictable experiences. Mainly caused by communicable
diseases, dying typically involved clear and recognizable symptoms such as fever, diarrhea,
nausea, vomiting, or muscle ache. Family members, friends, and those professionals who
might have been available would have been able to recognize that individuals displaying
these symptoms were seriously ill. On the basis of past experiences with similar patterns
of disease, it could often be predicted whether or not an individual afflicted in these ways
would recover or would die and possibly also when the outcome would be known.
Care given to such individuals would largely have been supportive in nature, offered
in the hope that the body would heal itself and concerned not to interfere in that
process. This care would likely have focused on providing a place to rest, shelter from the
elements, a cool cloth to wipe a feverish brow, and nourishing food (“chicken soup”).
Various forms of spiritual intercession would often have accompanied it. Many fortunate
individuals would have been cared for at home and by family members. Hospitals likely
would not have been available. Even when they were, they often took the form of
charitable institutions (almshouses) with large, crowded wards that were typically dark,
stuffy, unpleasant, and even life threatening since they threw together many different
types of people with very different disabilities and often contagious conditions.
As Western culture became more urbanized, hospitals began to change. During
the latter half of the 19th century, a biomedical model emerged that viewed disease as
involving specific entities and predictable causes. Therapy became intended to “fix”
malfunctioning parts of the human body. Specialization in carrying out therapeutic tasks
Culture, Socialization, and Dying 7
became the norm. A division of labor came to characterize both health care providers
and health care institutions. In particular, hospitals—now often called “medical centers”
or “health centers”—came to focus on acute care in which scientific medicine sought to
cure disease. A paradoxical result of this new focus on hospital-based, acute care is that
within the very institutions in which nearly half of all Americans now die death often
began to be perceived as involving a kind of failure.
Following passage of the Social Security Act of 1935, which added federal funding to
the personal resources of individuals and their relatives, health insurance, and retirement
packages, long-term care facilities began to be developed. These long-term care facilities
(often called “nursing homes”) filled the need for chronic care as families had often
become small, nuclear groupings in which individuals frequently lived at a distance from
their kin instead of extended clusters living nearby in the same community. Chronic care
became especially important as average life expectancy increased, individuals were no
longer able to work or had decided to retire from work well before their deaths, and
many required assistance in caring for themselves and in performing activities of daily
living as they lived out the last years of their lives.
Many long-term care facilities in our society provide excellent services, but some
have been hesitant when requirements for chronic care evolved into needs for end-of-
life care. Some coped by transferring residents to acute care hospitals shortly before their
deaths, while others tried to make do or to develop their capacities to care for dying
persons. However that may be, approximately 22 percent of all Americans currently die
in long-term care facilities.
Recent Efforts to Change Social Systems and
Improve Care for the Dying
During the early decades of the second half of the 20th century, new perspectives were
advanced concerning the situation of those who were coping with dying, the nature of
pain when one is dying, and appropriate therapeutic regimes for such persons. Above
all, these new perspectives questioned how the social organization of programs serving
those who are coping with dying affected the care provided and they stressed the
value of holistic, person-centered care and interdisciplinary teamwork. That led to the
development of the hospice movement, heightened interest in palliative care, and efforts
to apply hospice principles in hospitals, long-term care facilities, and other settings.
Unfortunately, there is evidence that these efforts have not benefited all who are dying
in our society, especially those in the best of our acute care institutions. For example, the
research project called SUPPORT (Study to Understand Prognoses and Preferences for
Outcomes and Risks of Treatments; SUPPORT Principal Investigators, 1995) examined
end-of-life preferences, decision making, and interventions in a total of 9,105 adults
hospitalized with one or more of nine life-threatening diagnoses in five teaching hospitals
in the United States. The 2-year first phase of the study observed 4,301 patients and
documented substantial shortcomings in communication, overuse of aggressive cure-
oriented treatment at the very end of life, and undue pain preceding death. The 2-year
second phase of the study compared the situations of 4,804 patients randomly assigned
to intervention and control groups with each other and with baseline data from Phase 1.
Physicians with the intervention group received improved, computer-based, prognostic
information on their patients’ status. In addition, a specially trained nurse was assigned
to the intervention group in each hospital to carry out multiple contacts with patients,
families, physicians, and hospital staff in order to elicit preferences, improve understanding
of outcomes, encourage better attention to pain control, facilitate advance care planning,
and enhance patient-physician communication.
The SUPPORT study used multiple criteria to evaluate outcomes, such as the timing of
written do not resuscitate (DNR) orders, patient and physician agreement (based on their
first interview) whether to withhold resuscitation, the number of days before death spent
in an intensive care unit either receiving mechanical ventilation or comatose, the frequency
and severity of pain, and the use of hospital resources. Results were discouraging. Phase
2 intervention “failed to improve care or patient outcomes” (p. 1591) and led to the
conclusion that “we are left with a troubling situation. The picture we describe of the care
of seriously ill or dying persons is not attractive” (p. 1597).
We are left to hope that the hospice movement—consisting of an estimated 5,000
programs that cared for 1.58 million dying persons in 2011 (almost 42% of all Americans
who died that year), nearly 67% of whom were able to die in a place they called home
(NHPCO, 2012)—and the related palliative care movement will eventually have a more
favorable influence on care of the dying in hospitals and long-term care facilities.
Some Concluding Thoughts
Dying persons have always been members of the human community and responsibilities
for their care have always been with us. In the preface to her celebrated book, On Death
and Dying (1969), Elisabeth Kübler-Ross reminded readers that we should pay attention
to dying persons and to all who are coping with dying for three reasons (Corr, 2011):
1. They are still alive and often have “unfinished business” they want and need
to address.
2. We need to listen actively to them in order to identify with them their tasks and
needs so that we can be effective providers of care.
3. They have much to teach us about our shared humanity and the final stages of
life with all its anxieties, fears, and hopes.
To say this message in another way, we pay attention to dying persons because they
are living human beings, because we want to improve our society for all its members, and
because we want to have better systems in place to care for ourselves and for our loved
ones when we face our own dying and death at the end of life.
9
Chapter 2
Religion, Spirituality, and Dying

Marcia Lattanzi-Licht
There are times in all of our lives when we are forced to reach deep into ourselves to
feel the truth of our real nature. For each of us there comes a moment when we can no
longer live our lives by accident. Life throws us into questions that some of us refuse to
ask until we are confronted by death or some tragedy in our lives (Wayne Muller, 1997).
Religion and spirituality are complex, overlapping concepts, each with different
significance for individuals. The focus for persons facing death typically includes addressing
spiritual needs, both religious and nonreligious. Religious needs center around one’s
relationship with God, and others, and possibly for preparing oneself for the afterlife.
Generally, religious concern center on a specific faith congregation or community and
are attached to an agreed-upon set of doctrines. (Lattanzi-Licht, Mahoney, Miller, 1998).
Religion for some people is the most important factor that keeps them going (Koenig,
1998). Religion may also contribute to spiritual pain or suffering as well as spiritual healing.
The Consensus Conference (Puchalski, et al., 2009) defined spirituality as involving
the ways individuals search for and express meaning and also the ways they experience
connectedness. Connections to the moment, to self, to others, to the sacred, and to
nature are all seen as part of spirituality.
For seriously ill persons, spirituality is often a bridge between feelings of hopelessness
and a renewed sense of hope and meaning (Frankl, 1959). Spiritual needs are not limited
to religion and are often a thread that runs through physical, emotional/psychological,
and social needs and concerns. Persons facing the end of life acknowledge a greater
spiritual perspective and orientation than nonterminally ill or healthy persons (Reed,
1987).
Facing Death
Recognizing that dying is more than a bio-psychosocial event, there have been human
spiritual “tasks” identified for coping with dying. The work of these tasks centers on
identifying, developing, or reaffirming sources of spiritual energy that can encourage
faith and hope (Corr, 1992; Saunders, 1967). Those who care for people facing the end
of life recognize and attend to a broad range of related spiritual needs:
• re-examining beliefs
• reconciling life choices
• exploring one’s lifetime contribution
• examining loving relationships
• exploring beliefs about an afterlife
• discovering meaning.
Spiritual needs typically involve personal reflection and examination. Some people
do the exploration in a solitary way, offering possibilities for understanding and healing
that may never be communicated directly with another. Others find the reflection and
feedback of another person helpful and an aid in discovery. Active listening and being
present promote the opportunity for persons who are seriously ill and dying to explore
spiritual concerns. Weisman (1972) identified open communication and warm personal
relationships as two of the important conditions that define an “appropriate death.” In
the unknown realm of sorrow and grief, caring human closeness is essential and can offer
considerable spiritual strength (Lattanzi-Licht, Mahoney & Miller, 1998).
In 1997, a Gallup Poll commissioned by the Nathan Cummings and Fetzer Foundations
examined spiritual concerns at the end of life (Gallup, 1997). The telephone interviews of
1,200 adults explored how people find comfort in their dying days, and things that worry
people when they think about their own death. They also explored how people plan for
disability or death, including considering physician-assisted suicide as a possibility. Survey
findings highlighted the importance of human contact as a source of both spiritual and
emotional support at the time of death. Respondents reported looking to family (81%)
and close friends (61%) to offer this support. Only 36% of people believed clergy could
provide effective spiritual support and comfort.
The Gallup study (1997) showed 24 different matters that might cause concern for
respondents as they consider their own deaths. Medical situations of suffering great pain
or living in a vegetative state are at the forefront of worry for all age groups. Specific
spiritual concerns move to the forefront for younger adults and include worries about not
being forgiven by God (72% of 18-24 year olds) and fear about death cutting them off
from God or a higher power (63%). One explanation might be that younger people are
still developing their personal spirituality and may feel less certain about facing ultimate
questions.
In the realm of relationships and connections, the Gallup survey (1997) found that
those who responded equally feared “not being forgiven by God” (56%) and “not
reconciling with others” (56%). Respondents also expressed significant concern about
dying when feeling removed or cut off from God or a “Higher Power” (51%).
Faith has the potential to strengthen and comfort us in difficult times of our lives.
Recent studies report on the personal importance of religion and its significant role
in the adjustment to illness. Religious coping (for instance, prayer, meditation, religious
Religion, Spirituality, and Dying 11
study) can offer a sense of comfort, control, personal growth, and meaning when facing
life-threatening illness. In a recent multicenter study, 88% of patients with advanced
cancer reported religion and spirituality to be personally important in adjusting to their
illness (Balboni et al., 2007).
Williams (2006) suggests a spectrum of spirituality at the end of life that includes
spiritual work (forgiveness, self-exploration, search for balance), spiritual despair (alien-
ation, loss of self, dissonance), and spiritual well-being (connection, self-actualization,
consonance). Spiritual well-being offers a measure of protection against end-of-life de-
spair and depression in persons facing death (McClain, Rosenfeld, & Breitbart, 2003).
A recent investigation into spiritual caregiving and spiritual assessments led analysts
to propose a model defining spirituality that distinguishes between the dimensions of
spiritual well-being (e.g., peace), spiritual cognitive behavioral context (spiritual beliefs,
spiritual activities, and spiritual relationships), and spiritual coping, highlighting the
relationships between the dimensions. (Gijsberts et al., 2011).
Both religion and spirituality offer the possibility to transcend personal concerns and
focus on a belief that is sustaining, including the belief in a caring or knowing presence. In
general, religious involvement and spirituality are associated with better health outcomes.
Meaning
While there is an ongoing interest in distinguishing religious and spiritual concerns, there
is also an evolving understanding of the significance of “spirituality.” In general, spiritual
experiences can be seen as important opportunities for learning, growth, and meaning.
Theologian John Shea (2000) presents the term spiritualities as the beliefs, stories, and
practices that respond to a basic, shared human need to find an integrated meaning.
These beliefs, stories, and practices are generated from social actions and interactions and
may or may not be linked to religious beliefs, practices, or communities.
Meaning can refer to a spiritual sense of purpose in life, which centers around
the capacity of an individual to feel the worth of his or her individual life. Most major
psychological and spiritual theorists, including Frankl, link meaning to one’s contribution
to the world through work, and to one’s important loving relationships. Meaning can also
refer to the attempt to understand and shape the personal response to a loss of physical
capacity or function, or physical pain, or to the death of a loved one.
The question of meaning can be perplexing and insoluble. Meaning relates to a
search for coherence or personal significance (Yalom, 1980). The challenging process
of discovering and creating meaning can help an individual grow spiritually. Frankl
(1959) offers three avenues for discovering meaning: creating a work or doing a deed,
experiencing something or encountering someone, and, the attitude we take toward
unavoidable suffering.
Exploring and attending to spiritual meaning is an essential focus for persons facing
death. A growing body of research indicates that a sense of meaning in life is associated
with improved psychological well-being, satisfaction with life, and overall quality of
life (Winkelman et al., 2011; Maxotti et al., 2011; Fry, 2000; Fryback & Reinert, 1999;
Cohen, et al., 1996; Rizzo, 1990). Spiritual individuals also tend to be more hopeful and
to experience more meaning or purpose in life (Mahoney & Graci, 1999).
Treatment Decisions
Religious beliefs can be a significant influence upon ethics and upon decision making at
the end of life. A person’s beliefs and values can profoundly affect how a person copes
with illness, as well as the treatment of illness.
In health care, the most common end-of-life dilemmas that require hard choices
can be influenced significantly by religious beliefs. These decisions center on attempting
resuscitation, utilizing artificial nutrition and hydration, hospitalizing, and shifting from
treatment goals to comfort goals (Dunn, 2001). Recent studies find positive religious
coping in people with advanced cancer is associated with receipt of intensive life-
prolonging medical care at the end of life (Phelps et al., 2009). Areas that pose religious
conflicts include utilizing ventilators, antibiotic treatment, and pain control. Media
coverage of the Terry Schiavo case and worries over health care “death panels” highlight
the differences in religious beliefs and values among members of our larger society as well
as family members (see Beutler, 2011).
In a clear representation of choice and personal comfort, nearly 70% of people
interviewed in the Gallup study wanted to die at “home” (1997). This decision, along
with others about continuing futile treatment, are often not discussed with people, or are
only offered in the final stage of an illness. By not giving people full information, their
perceptions of time and opportunities can be distorted. The time people believe they
have to spend meaningfully can be greatly diminished.
In recent studies, the vast majority of people (86-88%) feel it is important for health
care professionals to address spiritual concerns (Winkelman et al., 2007; Balboni et al.,
2007). Sadly, the Balboni (2007) report also showed that 72% of the people reported
that their spiritual needs were supported minimally or not at all by the medical system.
The religious beliefs of physicians can be another influence upon decision making
(Seale, 2010). Health care professionals have a sacred trust to offer seriously ill persons
truthful information, balanced with realistic hope. A person’s religious beliefs, or hope
for a miracle, should not be a barrier to referral to hospice or to offering timely and
excellent end-of-life care (Sulmasy, 2010). Many people continue to hope for a miracle
long after they know that the illness is rapidly progressing and treatment options are
without reasonable promise. In a spiritual framework, the focus becomes healing in a
symbolic, relational context, not from a physical standpoint.
Suffering
Suffering can be defined as an actual or perceived threat to the integrity or continued
existence of the whole person (Cassell, 1982). Facing the end of life brings inevitable
suffering, on physical, emotional, social, spiritual, and existential dimensions. Dame
Cicely Saunders (1967), founder of the modern day hospice movement, described the
realm of suffering by persons who are dying as “total pain,” involving the interaction of
physical, social, psychological, and spiritual pain.
Beliefs can be enabling mechanisms for survival. They create a framework for us
to live inside, where comfort and meaning can be found. Cultural and religious beliefs
influence personal ones in ways we may not recognize—and may complicate—coping
or increase suffering. For example, Puritan beliefs center around a God that punishes
people with illness based upon their actions or omissions. Questions of punishment, guilt,
and “deserving” illness or suffering all create distress. Old Testament images of a god of
retribution (Kushner, 1988) can create increasing feelings of isolation and abandonment.
Protestant beliefs in predestination could engender a sense of powerlessness in some
people. Even New Age beliefs can create a sense of failure or wrong living (what goes
around comes around). And beliefs in Karma leave one wondering about past lives and
past transgressions.
Frankl (1959) learned in his experience at Auschwitz that suffering itself is not
destructive; suffering without meaning has the potential to destroy a person. It is
possible to address physical suffering for a person facing the end of life. The possibility of
continued emotional-spiritual suffering was a significant death-related concern for 51%
of people in the Gallup study (1997). The intrinsic challenge of emotional or spiritual
suffering is to engage in the discovery of personal meaning. Existential suffering and
deep personal anguish at the end of life are some of the most distressing conditions that
occur in persons who are dying. The ways to address and respond to such suffering are
not well-understood (Boston et al., 2011).
Quality of life, including an emphasis on addressing spiritual needs, has been a main
focus for hospice and palliative care. By addressing the spiritual dimensions of personhood
through care practices and research, it is possible to decrease suffering and enhance the
quality of time remaining for individuals facing death (Chochinov & Cann, 2005).
Rituals
Rituals are both religious and spiritual. They may follow prescribed religious formats
and they are markers to communicate meaning and guide responses to change and loss
(Irion, 1999). In a multicultural society, persons may express their spiritual nature in a
variety of philosophical and religious beliefs and practices. These practices and rituals may
differ greatly depending upon religion, race, sex, class, ethnic heritage, and experience
(International Work Group, 1999).
Some people may express a longing for religious rituals or spiritual support at the end
of life. Individuals can carry out specific practices (prayer, meditation, dietary practices,
religious service attendance, etc.) as part of their religious or spiritual life. In settings
where persons who are facing death are cared for, spiritual assessments look at ways
to address the conditions or events that limit the ability to practice religious or spiritual
rituals (e.g., weakness, immobility, hospitalization, depression).
Rituals are ways to address the great mystery of death and the profound questions
it raises. Rituals related to dying are essential and offer three important elements of
comfort to participants: They bring people together, they acknowledge a significant
experience/event, and they create opportunities for support or comfort. Religious rituals
that recognize the profound human experience of death focus on the process of grief,
including separation, transition, and incorporation (van Gennep, 1960).
The use of ritual, expressive arts, and narrative are ways to create connection and
foster meaning. Art-based or verbal methods for eliciting individual and family narratives
can build relationships among the person who is ill, family members, and practitioners
(Romanoff & Thompson, 2006). These relationships can be therapeutic and potentially
transformative for all involved.
In some religious traditions sacraments mark significant passages or times in life.
In the Catholic church, the sacraments that are involved with the end of life include
the Sacrament of the Sick, Reconciliation, and the Eucharist. Each of these sacraments
blesses the person who is ill in unique ways. The Sacrament of the Sick, or Anointing of
the Sick, contains healing elements of restoring or renewing the person’s relationship
with their religious community. It contains a penitential rite of forgiveness, can relieve
suffering, and offers consolation and hope. The blessing and laying on of hands also
symbolically reduces isolation and asks for guidance for the journey ahead (Picchi, 2011).
John O’Donahue (2004), renowned Catholic theologian and writer, spoke of the sacred
nature of the deathbed, and of the sacramental importance of tending the spirit of the
person who is dying.
Religious and faith communities can contribute to spiritual comfort or healing in
many ways, but particularly through rituals. Rituals offer recognition of the finality of
a life, as well as a connection with transcendence, of the life to come. As rituals mark
a turning point between an old reality and the new, they serve to help mourners find
comfort and strength for the journey ahead.
Afterlife
Religious or spiritual ideas about immortality range from Christian beliefs about
resurrection to the cycles of rebirth in Eastern faiths like Buddhism and Hinduism. Some
who martyr themselves performing terrorist acts are assured by religious/political leaders
that their sacrifice will earn them a place in heaven. Some religious practitioners sacrifice
animals to gain protection from death. All of these beliefs imply freedom from one’s
biological finiteness, of living at a higher level of existence.
Beliefs in an afterlife can hold great comfort for persons facing death, as well as for
their family members. Most religious beliefs in an afterlife are predicated upon decent
behavior in the present human existence. Notions of reward or punishment permeate
conceptions of the afterlife. Some traditions believe that it is impossible to know whether
life continues, but encourage ethical behavior as the key to any potential continuation
of life.
Numerous authors describe a “spiritual world” and afterlife experiences (McEneaney,

2010; Weiss, 1988). The notion of an “unbroken connection” has some validity in the
context of the relationship transformation involved in developing continuing bonds.
It seems less important to examine whether these experiences are “real” than it is to
understand that for a number of people who are dying, and their loved ones who survive
them, they offer spiritual comfort and hope.
Legacy and Symbolic Immortality
In concert with the growing emphasis on spirituality and religion at the end of life, there
is emerging interest in legacy, and the power it has as a tool for clarifying the dimensions
of the life that has been lived, and of discovering the aspects of the self that is left for
others (Fink, 2011; Hunter, 2007-2008). Legacy work involves communicating meaning
and valued connections, two important dimensions of transcendence and spirituality
(Puchalski et al., 2009). By its very nature, legacy work affirms the value and meaning of
a person’s life,
There are many approaches and tools for legacy work with someone who is facing
the end of life. (Hunter 2007-2008; Fink, 2011). The essential task of legacy work is
meaning making, and specific approaches like reminiscence therapy, life review therapy,
dignity therapy, ethical wills all create opportunities for discovering threads of coherence
in one’s life narrative.
Robert Jay Lifton (1979) shaped a comprehensive theory based upon the human
need to symbolize continuity between death and life. Lifton defined a sense of “symbolic
immortality,” and believed that life is threatened when death is not transcended. The
first of Lifton’s five modes of immortality is “biological immortality,” or the sense of
living through and in one’s children. Lifton also describes, as many great religions have
maintained, a “theological immortality” that typically involves a form of personal afterlife
and a type of reunion with the divine or release to existence on a higher plane. The
third mode of immortality is achieved through “works,” or creating an enduring human
impact, the sense that one’s contribution will not die. “Natural immorality” diminishes
the pain of death as a person’s body returns to the earth where it is absorbed and utilized
for new life or survival by nature itself. And, finally, “experiential transcendence” involves
a psychic state so intense that in it, time and death cease to exist, a continuous present.
Adults can grow in their sense of symbolic immortality and purpose in life, and it acts to
help them cope with the fear of death (Drolet, 1990).
Symbolic immortality, with its links to history and biology, can be seen as a way of
trying to overcome the finality of death through contribution. Lifton made an important
point about nuclear danger threatening cultural symbols of immortality while propagating
haunting images of annihilation. The possibilities that all means for transcendence will be
destroyed creates fear that some believe has led to the growth of cults and religious
fundamentalism, and to contemporary drug “epidemics.”
In his writing on symbolic immortality, Lifton refers to Otto Rank who stressed
humanity’s need for reassurance about the eternal survival of the self. Rank (1958) held
that humans manipulate the natural environment and create culture to sustain spiritual
identity.
Conclusion
Religion and spirituality are important considerations for persons facing death, and for
their family members. Understanding the influence of a person’s religious and/or spiritual
beliefs, practices and experiences can enhance comfort and care at the end of life.
Dying can be seen as a spiritual journey. Images of supporting people at the end of life
often include journeying with them, following their lead. In addition to providing physical
and emotional care and comfort, those who care for persons facing death join with them
in exploring their beliefs and deepest life experiences, and sharing their questions about
the mystery that mortality presents.
Another image that applies to people facing the end of life is that of a spiritual search.
The search for meaning, connection, or hope does not involve an end or completion
point, but rather is a continuing, sometimes transcendent process, a process that engages
one’s spirit.
17
Chapter 3
Historical and Contemporary

Perspectives on Dying
Kenneth J. Doka
Early Efforts
While many people associate the historical roots of the study of dying with Kübler-Ross’
epochal book On Death and Dying (1969), in fact, the roots of the field are earlier.
In this section, I will explore some of the early and contemporary contributions to the
study of the dying process. This chapter begins with a brief history of some of the early
formative work, reviews the development of the concept of anticipatory grief, describes
more contemporary efforts to develop task models of dying, and discusses theorists who
have viewed dying as a developmental and transformative experience. This chapter in no
way presents a comprehensive review of all the work that exists on the field. Rather, it
represents the author’s perspective of influential work that has contributed to the care of
the dying. Persons who wish a more all-inclusive view may wish to consult varied social
histories of the field (Pine, 1977; 1986; Corr, Doka, and Kastenbaum, 1999).
Perhaps one of the earliest efforts to understand some of the psychosocial processes
of dying was Lindemann’s (1944) study of grief reactions that introduced the concept of
anticipatory grief—a topic that will be explored later in this section. Feifel’s The Meaning
of Death (1959) was one of the first publications and early efforts in the field. Though
the book had a broad focus, some of the articles did address the dying process. In that
same year, Cicely Saunders, who founded St. Christopher’s Hospice, published a series
of articles focusing on nursing and the dying (Saunders, 1959). In 1962, Weisman and
Hackett published a study on dying patients and the predilection to death.
Glaser and Strauss also published, in that era, two books that would contribute some
enduring concepts to the study of the dying process. In Awareness of Dying (1965),
Glaser and Strauss studied what dying people knew or suspected about their impending
deaths. It is important to remember that in that period, general practice was not to discuss
death with individuals who were dying. Nonetheless, Glaser and Strauss documented that
dying individuals experienced four different awareness contexts. In closed awareness, the
dying person had no inking of his or her impending death. As Glaser and Strauss noted,
this context was unstable and unlikely to last long as dying individuals began to respond
to both external and internal cues. In suspected awareness, dying individuals expected
their impending death—often trying to test their suspicions with medical staff or family.
A third context—mutual pretense—was the most common. Here patients and family
were aware of the impending death, but to protect the other each person pretended
that the patient would recover. A last context—open awareness—occurred when both
patients and family were aware of and could discuss the possibility of death. Glaser and
Strauss’ (1965) work played a significant role in questioning the veil of silence that had
surrounded the dying process.
Their second work, Time for Dying (Glaser and Strauss, 1968), focused on the
temporal organization of death within the hospital. They noted that most deaths followed
certain expected trajectories. “Badly timed” deaths, where the death did not follow an
expected trajectory, often created great difficulty for staff.
Sudnow’s Passing On: The Social Organization of Dying (1967) was an ethnographic
account of dying in two hospitals. While Sudnow’s work was wide-reaching and touched
on numerous themes, one of his most enduring contributions was the introduction of the
concept of social death. Social death referred to his observed phenomenon that family and
staff often treated many comatose patients, though technically living, as if they were dead.
Hospice: A Way to Care for the Dying
In this early period, Saunders founded St. Christopher’s Hospice, often credited as the
first hospice, in the London area. Saunders emphasized that dying was not simply a
biomedical or physical event but also had psychosocial, familial, and spiritual implications.
Care of the dying needed to be holistic and centered on the ill person and his or her family
as the unit of care. St. Christopher’s tried to create a homelike atmosphere that sought
a holistic, family-centered way to allow dying persons to live life as fully as possible, free
from debilitating pain and incapacitating symptoms. Both the hospice philosophy and the
growth of hospice did much to improve the treatment of dying persons and to encourage
the study of the dying process
The hospice movement’s remarkable history is well-noted in other sources (see for
example, Stoddard, 1978). It is, perhaps, one of the most successful grassroots movements
in the last quarter of the 20th century. The holistic philosophy of hospice has permeated
much of medicine now—at least in terms of a recognition that a patient’s quality of life
means meeting not only physical needs but psychological, social, and spiritual needs as
well. Moreover, the success of hospice has led others to seriously question how well the
medical system generally meets the needs of those who are dying as a result of multiple
serious chronic illnesses (Myers & Lynn, 2001).
St. Christopher’s became a beacon both of research and practice generating seeds that
would grow throughout the world. Literally many of the pioneers who would influence
the development of hospice and palliative care visited or trained there.
Historical and Contemporary Perspectives on Dying 19
In the United States the success of St. Christopher’s resulted in the development of
Hospice Inc. outside of New Haven, CT, in 1974. Branford also had a small home care
unit. But it was William Lamers, a founder of a hospice in Marin County, CA, that viewed
home care as both the heart and future of hospice. To Lamers, the idea of a homelike
environment could best be offered within the patient’s actual home. Lamers offered a
model that freed interested individuals from fundraising for new facilities. This home care
model of hospice quickly spread throughout the United States sponsored by a range of
groups from churches and interfaith groups to junior leagues. Hospice then took a very
different cast in the United States compared to England in that, in the United States,
hospices primarily offered home care and heavily stressed psychosocial care and the use
of volunteers (Connor, 1998).
Not everyone learned the same lesson at St. Christopher’s. St. Christopher’s impressed
Balfour Mount, a Canadian physician. However, Mount was convinced that the lessons
of St. Christopher’s need not necessarily lead to a new form of care but could be applied
even in the high-technology environment on the modern hospital. When he returned
to the Royal Victoria Hospital in Montreal, Canada he pioneered the development of a
hospital-based palliative care model.
To Saunders and Kastenbaum (1999), the growth of hospice was a reaction to a number
of trends. First, technology-driven medicine focused on cure, seemingly abandoning those
who were no longer responsive to treatment. Second, hospice resonated with two other
themes of the era—consumerism and return to nature. Both trends converged on the idea
that individuals could create alternative, more natural organizations, where persons could
take control of their lives—and their deaths.
The hospice movement, both directly and indirectly, also accelerated interest in
complementary and alternative therapies. Complementary therapies may be defined as
those treatments, such as imagery or diet, that are employed in addition to conventional
medical approaches, while alternative approaches are those that are used instead of
conventional medical treatment (Doka, 2009). The holistic nature of hospice care has
led to a range of additional treatment modalities including bodywork, acupuncture, and
expressive therapies to provide palliation (Kalauokalani, 2006). The same consumerist
orientation that supported hospice also fueled interests in alternative approaches.
Kübler-Ross and On Death and Dying
Few of these efforts, at least in the very beginning, captured as much public attention
as did the publication of Kübler-Ross’ On Death and Dying. The book appeared at the
right moment. Kübler-Ross was a charismatic woman who spoke of a “natural death” at
a time when there was an increased aversion to technological and personal care (Klass &
Hutton, 1985). Her message found a ready audience.
Kübler-Ross posited that dying persons went through a series of five (now famous)
stages—denial, anger, bargaining, depression, and acceptance. Through her case
vignettes, she made a powerful plea for the humanistic care of the dying patient. In an
excellent evaluation of Kübler-Ross’ contributions, Corr (1993) suggests that this call
for humanistic care and her affirming message to talk to dying persons, along with the
heuristic value of the work, are the enduring legacies of the book.
The stages, though still popular in lay literature, are far more problematic. Evaluations
of her theory of stages (see, for example, Doka, 1993) note many problems. Some are
methodological in nature. Kübler-Ross never really documented her material. It is unclear
how her data were collected or how many patients experienced what reactions. Nor has
research supported the concept of stages (e.g., Schulz & Aderman, 1974). There are
other problems as well. While Kübler-Ross insisted that the stage theory was not to be
understood literally or linearly, the book clearly offers an impression of linear stages. As
such, individual differences and the diverse ways that persons cope are often ignored.
In addition, it is unclear whether the stages represent a description of how persons cope
with dying or a prescriptive approach that stresses that dying individuals ought to be
assisted to move through the five stages and eventually embrace acceptance.
Weisman’s (1972) work on denial suggests another difficulty—denial and acceptance
are far more complicated than Kübler-Ross perceived. In his work, Weisman described
orders of denial emphasizing that patients might deny symptoms, diagnosis, or impending
death. Weisman notes that denial is not always negative. It allows patients to participate
in therapy and sustain hope. Weisman introduces a very significant concept of middle
knowledge—meaning that patients drift in and out of denial; sometimes affirming, other
times denying the closeness of death. To Weisman the important question was not “Does
the patient accept or deny death?” but rather “When, with whom, and under what
circumstances does the patient discuss the possibility of death?”
In summary then, the 1960s and 1970s were a formative time for the study of dying.
In this period many of the classic works and key concepts were developed. It also was a
period when hospice continued to develop and begin to expand.
The Evolution of the Concept Anticipatory Grief
In the closing section of his study on acute grief, Lindemann (1944) noted that grief
reactions could be in anticipation of loss. Fulton and associates (Fulton & Fulton, 1971;
Fulton & Gottesman, 1980) attempted to develop this concept. Fulton’s concern was
that the term was easily misused. Fulton wrote at a time when many clinicians attempted
to “encourage” family members to experience anticipatory grief under the assumption
that the acknowledgement and processing of the grief prior to the loss would mitigate
grief experienced after the death. He later described this approach as a “hydrostatic”
perspective of grief—indicating a zero-sum notion of grief, that is, that there is just so
much grief or tears that can be expended. Therefore whatever is experienced earlier on in
the illness will not need to be encountered later (Fulton, 1987). Moreover, foreknowledge
or forewarning of death does not seem necessarily to imply that anticipatory grief occurs.
It is little wonder that research found little evidence that the anticipation of loss positively
influenced later grief outcomes (see Rando, 2000, for an extensive review). Fulton
has since reevaluated the concept, stating “I have serious reservations regarding the
heuristic value—either theoretical or practical—of the concepts ‘anticipatory grief’ and
‘anticipatory mourning’” (Fulton, 2003, p. 348).
Rando (2000a), though, has offered an extensive revision of the concept. Rando
acknowledges that the term anticipatory grief is a misnomer. Yet, she still finds it useful.
Rando redefines anticipatory grief referring to the phenomena as anticipatory mourning.
This is a critical distinction. Anticipatory grief refers to a reaction while anticipatory
mourning is a far more inclusive concept referring not only to reactions experienced
but also the intrapsychic processes that one uses to adapt to and cope with life-limiting
illness. Rando also redefines the concept as referring not only to the grief generated by
the possibility of future loss but primarily as a reaction to the losses currently experienced
in the course of the illness. The patient is not the only person to incur these losses. Family
members and even professional caregivers may experience these losses as the patient
continues to decline. Rando’s reformulation then frees the concept from much of the
earlier misconceptions that proved problematic.
Task and Phase Models of Coping With
Life-Threatening Illness and Dying
Worden’s publication of Grief Counseling and Grief Therapy (1982) represented a
paradigm shift in the way we understand mourning—one that would contribute to the
study of dying as well. While prior models offered a more linear stage or phase theory to
explain the mourning process, Worden conceptualized mourning as a series of four tasks.
As Corr (1992) noted, the use of tasks offered certain advantages. Implicit in the concept
of tasks was an inherent assumption of individuality and autonomy not often seen in
stage models. Bereaved individuals might find it easier to cope with some tasks than with
others. They would complete tasks in their own unique ways. And grieving persons would
complete these tasks on their own timetable or even choose not to address certain tasks.
Also unlike stage theories, there was no assumption of linearity. Moreover a task model
had clear clinical implications. A grief counselor could assist clients in understanding what
tasks they were struggling with and facilitate these grieving clients as they sought to work
on these difficult tasks.
Both Corr (1992) and Doka (1993, 1995) applied the concept of tasks to the dying
process. To Corr, coping with dying involved four major tasks that correspond to the
dimensions of human life—physical, psychological, social, and spiritual. The physical task
was to satisfy bodily needs and to minimize physical distress in ways that are consistent
with other values. Corr defined the psychological task as to maximize psychological
security, autonomy, and richness. The social task was to sustain and enhance those
interpersonal attachments that are significant to the person concerned and to sustain
selected interactions with social groups within society or with society itself. Corr’s spiritual
task was to address issues of meaningfulness, connectedness, and transcendence and, in
doing so, to foster hope.
Building on the work of both Pattison (1978) and Weisman (1980), Doka (1993, 1995)
suggested that a life-threatening illness can be understood as a series of phases, noting
that not all phases would appear in any given illness. The prediagnostic phase concerns
itself with the process of health seeking. It refers to the time prior to the diagnosis. One
of the most common, but not the only context, would be the time between when an
individual notices a symptom and seeks medical assistance. The acute phase refers to
the crisis period surrounding the diagnosis of life-threatening illness. The chronic phase
refers to that period when the individual struggles with the disease and treatment. Many
individuals may recover from the illness. However, Doka reminds that in the recovery
phase, individuals do not simply go back to the life experienced before illness. They still
have to adapt to the aftereffects, residues, and fears and anxieties aroused by the illness.
The terminal phase revolves around adapting to the inevitability of impending death as
treatment becomes palliative.
At each phase, individuals have to adapt to a series of tasks. These tasks derive from
four general or global tasks—to respond to the physical facts of disease, to take steps to
cope with the reality of the disease, to preserve self-concept and relationships with others
in the face of the disease, and to deal with affective and existential/spiritual issues created
or reactivated by the disease.
Though these models seem to have interesting implications for understanding the
ways that individuals cope with dying and life-threatening illness, they have not been
widely applied. Yet, they still represent a possible direction as we strive to develop new
approaches and models of the dying process.
Future Trends
Dying continues to evolve. In recent years the four leading causes of death in the
United States and many industrialized countries include cardiovascular diseases, cancer,
cerebrovascular diseases, and respiratory diseases. Moreover as the population ages, it is
not unusual that many patients will have multiple chronic conditions at end of life. This
aspect of aging has made medical management of the dying process more complicated
both ethically and medically. Ethically, it raises the question of whether some chronic
conditions should be treated when the goal of care has become palliative. Medically it
means that multiple conditions are being simultaneously treated, making both treatments
complex, and the dying trajectory less predictable. This emerging medical reality has led
to an interest in concurrent care—or medical treatment where palliative care is offered
concurrently with life-extending treatment.
The Possibilities in Dying
In addition to coping with dying, there has been some work on possibilities for continued
growth and development throughout the dying process. Kübler-Ross (1975), in her edited
book, Death: The Final Stage of Growth, suggested that accepting the finiteness of life
allows us to more fully live life—discarding the external roles and petty concerns that are
essentially meaningless. Dying persons are our teachers, she asserts, since accepting the
limited time left in their lives they can focus on what is truly important and meaningful.
Byock (1997) in his book Dying Well: The Prospect for Growth at the End-of-Life
suggests that once a dying patient is freed from pain, that person retains the human
potential to grow and the possibility to use his or her remaining time to express love,
finish significant and meaningful tasks, and reconcile with others.
The key caution is to remember that these are possibilities—possibilities to be
embraced by the dying person. They become a danger when others, whether family
members or health professionals, see it as their goal to induce the dying person to achieve
such possibilities. Shneidman (1992) offers a fitting caution that no one has to die in a
state of “psychoanalytical grace.”
Conclusion
While the study of grief abounds with exciting ideas and the hospice movement has
expanded exponentially, the study of the dying process has been relatively neglected. It
can be hoped that the next decade will be one of increased attention to and development
of new ways to conceptualize the ways that individuals experience dying and evidence-
based interventive strategies to assist dying persons, their families, and their caregivers.
25
Chapter 4
Life Span Issues and Dying

Mary Alice Varga and Robin Paletti
A central issue in thanatology research involves the physical and psychosocial experiences
of dying and implications across the human life span. For individuals facing death,
negotiation of the dying process is often fraught with developmental challenges. This
chapter aims to provide an exploration of these concerns, including such relevant factors
as normative developmental task fulfillment, death attitudes across the life span, and
palliative care issues. It should be noted that the varied experiences of dying—and
human development itself—are shaped in large part by social, cultural, and historical
factors (Morgan & Laungani, 2002; Parkes, Laungani, & Young, 1997); a comprehensive
examination of these influences, however, lies beyond the scope of this chapter, which
instead offers a distinctly Western perspective, rooted theoretically in Erikson’s (1963,
1968) widely recognized ideas concerning human life span development.
The term life cycle has been defined as the underlying order of the course of human
life (Neugarten & Datan, 1973). The most generally accepted theories of human life
span development describe a series of normative transitions through which an individual
progresses from infancy through adulthood (Erikson, 1963; Freud, 1917; Jung, 1933/1971).
Among the most influential of these, Erikson’s (1963) task-oriented model characterizes
the human personality as evolved through social experience. During each of the eight
distinct stages of development, an individual is presented with a psychosocial conflict
and masters challenges and developmental tasks in a normative process. Failure to fulfill
these developmental tasks impedes the maturation process. For terminally ill individuals,
confrontation with death poses significant barriers to normative task completion, giving
rise to a number of urgent developmental concerns. As individuals across the life span
strive towards personality fulfillment in the face of death, their experiences provide
valuable insight into the dying process, and pave the way for the improved care of the
terminally ill.
Infancy and Childhood

The term childhood generally refers to the first 10 to 12 years of life, encompassing
four basic developmental stages: infancy (birth through approximately 12-18 months),
toddlerhood (infancy through approximately 3 years), early childhood (approximately 3
to 6 years), and middle childhood (6 years to puberty) (Erikson, 1963). While childhood
deaths are rare, the National Center for Health Statistics (Murphy, Xu, & Kochanek,
2012) reports the largest number occurring during infancy. The overall infant mortality
rate in the United States is approximately 614 deaths per 100,000 live births. Statistics,
however, reveal discrepancies among racial groups. The mortality rates among Hispanic
and Caucasian Americans are 537 and 528, respectively and the rate increases to 1,100
deaths per 100,000 live births for African Americans. For older children, ages 1 to 4 years,
the total number of deaths declines to approximately 27 deaths per 100,000 people. The
leading causes of these deaths are accidents, followed by congenital malformations, and
homicide. Among older children, the death rate decreases to approximately 13 children
per 100,000, with the leading cause remaining accidents, followed by cancer (malignant
neoplasms).
Developmental Issues
According to Erikson (1963, 1968) each of the four stages in childhood may be
characterized in terms of a particular developmental task including trust, autonomy,
initiative, and industry. Confrontation with death during any of these stages may hinder
the maturation process. The developmental work of infants, for instance, involves the
cultivation of trust versus mistrust, thus allowing children to develop a sense of hope,
along with a perceived ability to rely on others to fulfill needs. For chronically ill infants,
extended hospital stays, constantly changing environments, and painful and confusing
medical procedures may interfere with the ability to develop a psychic bond with adults
and to develop the trust crucial to development (Doka, 1996).
Later in childhood, an overriding tension emerges between a child’s sense of
autonomy and external control factors (Erikson, 1963). The primary developmental task
at this stage of development involves the establishment of a sense of independence
and self-control. Physical limitations for terminal toddlers, caused by illness and parental
overprotectiveness, may compromise the ability to develop a sense of self-control and
autonomy (Doka, 1996).
Terminal illness during early and middle childhood presents additional challenges.
Between the ages of approximately 3 to 6 years, a child must begin to balance personal
desires with moral responsibility (Erikson, 1963). Children begin taking initiative exploring
new activities, making choices and judgments, and gauging their level of capabilities.
In older childhood, children between ages 6 to 12 years become more concerned with
productivity and mastering complex skills. Interests and abilities are also discovered,
resulting in a sense of industry. These two stages and the resolutions of initiative and
industry are critical for the development of self-confidence. For dying children, however,
Life Span Issues and Dying 27
inconsistent discipline, coupled with parents’ reluctance to set behavioral limits, may
undermine these resolutions (Doka, 1996). In older children, the struggle to meet
academic demands while coping with terminal illness may compromise the achievement
of mastery and competence and negatively affect self-esteem. Physical limitations, as
well as parental safety concerns, may also impede the development of children’s industrial
capacity.
Childhood Death Attitudes
Children’s attitudes towards death are largely influenced by cognitive developmental
levels, socialization, religion, and prior experience with death and dying and vary by age
and gender (Florian, 1985; Mahon, Goldberg, & Washington, 1999; Silverman, 2000a;
Walker and Maiden,1987; Yang & Chen, 2009). In general, research surrounding children’s
death concepts suggests three distinct developmental stages and includes components of
nonfunctionality, irreversibility, and universality (Nagy, 1948). Nonfunctionality addresses
the understanding that functions such as breathing and eating characterize something
as living, and the functions created at death. Irreversibility focuses on the concept that
a human body cannot physically return from death. Universality is the understanding
that living things will eventually die. For children under 5 years of age, death may be
perceived as reversible, or the result of magical or medical intervention (Speece & Brent,
1992). Among children ages 5 through 9, death is often personified, or perceived as a
contingency, and viewed as escapable. Children beyond age 9 are able to recognize that
death is universal, irreversible, and that human functioning ceases; however, research
also shows children developing mature understandings of death as early as age 6 (Hunter
& Smith, 2008; Mahon, et al., 1999; Nagy, 1948). Furthermore, male children are more
likely to accept and confront death while female children express more negative emotions
and resistance toward death (Yang & Chen, 2009).
As terminally ill children learn about their condition, they often develop heightened
levels of anxiety (Corr, 1999). Unsurprisingly, death anxiety among dying children
is greater than among their healthier peers (Waechter, 1971). In early childhood, this
anxiety arises from a fear of parental separation, while older children more often fear
destruction and body mutilation following death (Corr, 1999).
Implications for Care
Consideration of developmental issues is crucial for effective care of terminally ill children.
In addition to providing maximum physical relief of symptoms, caregivers may facilitate
children’s psychosocial development by encouraging active communication throughout
the dying process (Adams & Deveau, 1987). Corr (1999) cites music, art, or drama
therapy as particularly helpful in this regard. Assigning children appropriate roles in the
management of illness and treatment decisions is also critical toward the development of
mastery and the maintenance of a healthy self-esteem. Caregivers must allow children to
function as active partners in treatment, allowing for the development of a crucial sense
of autonomy, while supporting social interaction by facilitating access to peers.
Adolescence
Adolescence is generally understood as the period of life ranging from age 12 to
approximately 18 years (Erikson, 1963); however, there is recognition of fluidity about the
beginning and end of the adolescent years due to early onset of puberty and extended
delays in achieving autonomy; the NCHS (Murphy et al., 2012) cites the number of
deaths among younger teens at approximately 13 per 100,000 people, with accidents and
cancer the two leading causes. For older adolescents, this rate increases to approximately
68 per 100,000 people, with accidents again the leading cause of death, followed by
suicide. Normally a time of burgeoning possibilities, adolescence is a dynamic period in
the human life span. When death occurs at this stage, it is accompanied by a number of
complex psychosocial considerations.
Adolescents are confronted with a host of unique transitional issues in their biological,
cognitive, social, and affective development (Noppe & Noppe, 2004). Along with
profound physical changes, for instance, teenagers must also negotiate pressing
psychosocial concerns surrounding the attainment of independence, peer acceptance,
and self-esteem. Erikson (1968) describes the primary task of adolescence as identity
formation, citing teenagers’ struggle to formulate personal and occupational goals, and
to address issues of sexuality and gender. Klopfenstein (1999) conceptualizes this period
in terms of three substages: early adolescence, middle adolescence, and late adolescence.
Early adolescence (ages 10 to 14 years) involves a predominant shift in attachment from
parents to peers. Middle adolescence (ages 15 to 17 years) encompasses the development
of individual self-image, experimentation, and the cultivation of abstract reasoning ability.
Late adolescence (late teens to 20 years) describes a period of increased self-acceptance,
concern for others, and an increasingly future-oriented view of the world.
Confrontation with death in terminally ill patients during adolescence poses
challenges to identity formation and frustrates the normative developmental processes
in several ways. Physically, changes associated with puberty may be delayed, replaced
by unwelcome side effects of treatment, including hair loss, acne, weight fluctuations, or
disfigurements (Freyer, 2004). The psychosocial development of terminally ill teenagers is
also profoundly affected by the dying process. The crucial struggle for independence and
mastery is often exacerbated in various instances. For example, physical and emotional
dependence may increase as treatment progresses (Nannis, Susman, & Strope 1978;
Freyer, 2004). Peer relations, critical to the development of adolescent identity, may also
be hindered by chronic illness. Difficulty participating in social or athletic activities, a lack
of sexual outlets, prolonged hospital stays, frequent outpatient visits, or home medication
regimens may impede socialization and lend themselves to a sense of isolation among
terminally ill teens (Freyer, 2004).
Adolescent Death Attitudes

Research suggests that teenagers’ conceptions of death evolve over the course of three
stages of adolescence and are intrinsically related to developmental issues (Noppe and
Noppe, 1996). Concepts of death among younger teens most often involve parental
separation, while individuals in midadolescence tend to focus on death’s impact on
others. For college-age youth, consideration of one’s legacy supersedes concern with
personal mortality. Teenagers’ burgeoning abstract-thinking skills give rise to more fully
developed concepts of death than those found in younger children, and by adolescence,
most individuals understand death as universal and irreversible (Foley & Whittam, 1990).
Still, the struggle to construct an identity may also impede a logical understanding of
death, resulting in increased anxiety among adolescents (Noppe & Noppe, 2004). Death
anxiety, in fact, is at its highest levels among teens that possess “less stable ego pictures”
at the peak of identity formation (Alexander & Alderstein 1958, p. 175).
Caring for dying adolescents should address physical and psychosocial concerns. Special
consideration should be taken to support unique developmental needs, including the
application of treatment models, which emphasize ego identity through acceptance of death
(Nannis et al., 1978). In an effort to enhance a sense of autonomy and independence for
terminal teenagers, caregivers might also allow for appropriate graduated participation in
treatment decisions, although such choices may be complicated by questions surrounding
cognitive capacities (Freyer, 2004). Schoeman (1980) also stresses the importance
of family privacy, autonomy, and responsibility in end-of-life decision making among
terminally ill adolescents.
Adulthood
Adulthood is a life stage that may also be conceptualized in three parts: young adulthood
(ages in 20s and 30s), middle adulthood (ages in 40s, 50s, and early 60s), and late
adulthood or maturity (ages beyond 65) (Cook & Oltjenbruns, 1998; Erikson, 1963).
Death rates among the latter group are the highest, at approximately 6,859 deaths per
100,000 people (Murphy et al., 2007). Among the elderly, heart disease is the primary
cause of death, followed by cancer. In midadulthood, the death rate decreases to
approximately 629 per 100,000 people, with cancer and heart disease again the two
leading causes. Among younger adults, the death rate decreases further, to 103 deaths
per 100,000 people, with accidents and cancer as the predominant causes. At each stage
of adulthood, confrontation with the dying process demands negotiation of an array of
pressing psychosocial issues.
The primary developmental tasks of adulthood involve the exercise of responsibility and
the expansion of competencies (Cook & Oltjenbruns, 1998). For young adults, love
relationships are a principal focus, as individuals strive to achieve intimacy versus a sense
of isolation (Erikson, 1963). At this stage of life, adults have established their identity
and may commit to close friendships, marriage, career, and parenthood. When terminal
illness intrudes upon these developmental tasks, many young adults are fiercely resistant
(Pattison, 1977). Intimate relationships may also be threatened by the onset of terminal
illness, as partners become alienated by their own fears surrounding the dying process
(Cook & Oltjenbruns, 1998). Nevertheless, close relationships often serve to allay fears of
isolation and aid the terminally ill in feeling valued as individuals.
As adults age, psychological emphasis shifts to contemplation of achievements and
generativity (Butler & Lewis, 1982; Erikson, 1963). Relationships remain important at
this stage of life, along with a sense of individual and familial security (Pattison, 1977).
Erikson (1968) describes middle adulthood in terms of generativity versus stagnation, as
individuals focus increasingly on parenting and the next generation. Death at this stage
usually follows considerable introspection and a reevaluation of one’s accomplishments
(Cook & Oltjenbruns, 1998).
In the elder ages of adulthood, death and dying emerge as more immediate concerns.
Among the elderly, dying is often characterized by a process of life review (Butler, 1963), as
individuals strive to maintain ego identity in the face of despair (Erikson, 1963). Successful
resolution of this stage of development allows for the cultivation of wisdom, feelings of
contentment, and a sense of acceptance and fulfillment. Failure to achieve these virtues
results in a sense of hopelessness, derived from an individual’s disappointment in a life
perceived as poorly lived (Erikson, 1982).
Adult Death Attitudes
Death attitudes in adulthood vary and are influenced by a number of factors, including
gender, ethnicity, physical and psychological health, religious beliefs, environmental
factors, generational differences, experience with death and aging, and life satisfaction
(DePaola, Griffin Young, & Neimeyer, 2003; Fortner & Neimeyer, 1999; Walker &
Maiden, 1987). In general, studies suggest that death anxiety decreases from midlife to
old age. However, Russac, Gatliff, Reece, and Spottswood (2007) found that peaks in
death anxiety for women appear during the age range of the mid-20s and then again in
the early 50s, which they attribute to female reproductive statuses.
Research also provides specific insight on death anxiety and death attitudes among
adults. Among older adults, women report more death anxiety than men (Azaiza, Ron,
Shoman, & Gigini, 2010; Besser & Priel, 2007; Circirelli, 2001; DePaola et al., 2003;
Suhail & Akram, 2002). Differences in death attitudes among various ethnicities have also
been cited. Whereas older Caucasian adults report fears pertaining to the dying process,
African Americans report fear of the unknown, consciousness when dead, and the status
of the body after death (DePaola et al., 2003). Older adults with less religiosity exhibit
greater anxiety about various dimensions of death (Cicirelli, 2002; Suhail & Akram, 2002;
Wu, Tang, & Kwok, 2002). Older adults living in institutions show more fear of death
when compared to older adults living independently (Azaiza et al., 2010; Fortner &
Neimeyer, 1999). Finally, it is also suggested that older adults with increased physical and
psychological concerns experience greater death anxiety (Moreno & Moore, 2008; Wu
et al., 2002).
Similar to cases involving children and adolescents, key developmental issues must be
addressed in caring for dying adults. As intimacy is a critical concern for individuals in this
age group, its expression ought to be encouraged through open communication and,
when applicable, marriage therapy. Modified continuation of occupational roles might also
be encouraged for young adults with terminal illness to gain a sense of accomplishment
and achievement (Cook & Oltjenbruns, 1998). At middle age, treatment choices ought
to support generativity processes through the continued realization of social roles and
relationships. Allowing individuals a prominent role in postdeath arrangements is often
helpful in this regard. Such participation in end-of-life decision making is also an important
aspect of treatment for the elderly, for whom autonomy is vital to the maintenance of
a positive self-concept (Corr, Nabe & Corr 2003). According to Corr, Nabe, and Corr,
caregivers should encourage older adults to conduct life reviews, perhaps using photos
as stimuli. Individualized care, either at home or within a personalized institution, is also
suggested, in order to help dying adults achieve maximum physical and psychic comfort
levels. DePaola et al. (2003) also recommends encouraging the elderly to conduct life
reviews to increase ego-integrity and reduce overall death anxiety.
Conclusion
From infancy to adulthood, individuals are faced with various crises throughout their life
span that can significantly affect development and normative task fulfillment. Individuals
confronting death are often presented with specific physical and psychosocial crises
that intensify the developmental process and present complex concerns. Ultimately, the
struggle toward normative development and personality fulfillment in the face of death
characterizes the dying process across the human life span.
33
Chapter 5
The Family, Larger Systems, and

the Dying Process
Stephen R. Connor
Thirty-five years ago those working in the new field of death, dying, and hospice believed
that the need for specialists who cared for the dying would be obsolete in 20 years. Good
care for the dying would become part of the larger health care system and separate
organizations such as hospice would no longer be needed. While a laudable goal, it is
now clear that the need for those who specialize in care of the dying will continue for the
foreseeable future.
Improvements have been made in the way our health system provides care for the
dying, and in this chapter we will explore the evolving structures and systems that have
emerged to deliver care, including: hospice care, palliative care, professional certification
and hospice and palliative care as a new medical subspecialty, care of the dying in
institutions, care for underserved populations such as prisoners, the disabled, minorities,
those with uncertain prognoses or stigmatizing conditions, those in very rural areas, and
the mentally ill. In addition, the impact of death and dying on our evolving concept of
family or attachment network will be examined including the biomedical–psychosocial–
spiritual model, the stress of caregiving, and the current thinking on awareness of dying
and the impact of differing trajectories of dying. Hospice care in the United States has
been one of the most successful experiments at delivering palliative care to date despite
a number of significant limitations.
Hospice Care
The National Hospice and Palliative Care Organization (National Hospice and Palliative
Care Organization [NHPCO], 2000, p. ii) definition of hospice states:
Hospice provides support and care for persons in the last phases of an incurable
disease so that they may live as fully and as comfortably as possible. Hospice
recognizes that the dying process is a part of the normal process of living and
focuses on enhancing the quality of remaining life. Hospice affirms life and neither
hastens nor postpones death. Hospice exists in the hope and belief that through
appropriate care, and the promotion of a caring community sensitive to their needs
that individuals and their families may be free to attain a degree of satisfaction in
preparation for death. Hospice recognizes that human growth and development
can be a lifelong process. Hospice seeks to preserve and promote the inherent
potential for growth within individuals and families during the last phase of life.
Hospice offers palliative care for all individuals and their families without regard
to age, gender, nationality, race, creed, sexual orientation, disability, diagnosis,
availability of a primary caregiver, or ability to pay.
Hospice programs provide state-of-the-art palliative care and supportive
services to individuals at the end of their lives, their family members, and
significant others, 24 hours a day, 7 days a week, in both the home and facility-
based care settings. Physical, social, spiritual, and emotional care are provided by
a clinically directed interdisciplinary team consisting of patients and their families,
professionals, and volunteers during the:
1. Last stages of an illness;
2. Dying process; and
3. Bereavement period.
Modern hospice care began with Cicely Saunders’ founding of St. Christopher’s
Hospice outside London in 1967. Today there are more than 16,000 hospice or palliative
care services worldwide in 136 countries (Lynch, Connor, & Clark 2012). The first U.S.
hospice began serving patients in 1973 (Connor, 2009; Stoddard, 1992). Today there are
more than 3,000 U.S. companies that deliver hospice services at more than 5,150 offices
serving defined areas. In 2010 an estimated 1.58 million patients and families received
services from a hospice provider (NHPCO, 2011). Of those served, approximately
1,029,000 died, 292,759 were carried over into 2011, and 259,000 were discharged for
a reason other than death, usually due to improved condition.
In 2010 there were an estimated 2.465 million deaths in the United States from all
causes (Centers for Disease Control [CDC], 2012). Therefore, if 1,029,000 people died
under hospice care in 2005, then almost 42% of all people who died that year had at
least one day of hospice care before they died—a really remarkable feat for palliative care
in the United States and a benchmark internationally. The true denominator for the need
for hospice or palliative care is unknown, but if we eliminate those who clearly would
never access hospice or palliative care including those dying of sudden trauma, non-HIV
infectious diseases, sudden heart attack or stroke, and those who become acutely ill and
die but who were not dependent prior to their illness, we can eliminate almost one-third
of all deaths from the denominator (Connor, 1999). Hospice in the United States is now
reaching well over half of those who need care, and this statistic does not include those
receiving palliative care outside of hospice.
However, are people getting hospice care for a long enough period prior to death to
benefit? In the early days of hospice care in the United States average length of service
was about 70 days. For hospice to be maximally effective some (Iwashyna & Christakis,
The Family, Larger Systems, and the Dying Process 35
1998) have suggested that 2-3 months of care are needed. This duration is to allow
enough time to prepare and educate caregivers, to assist in getting affairs in order, to
prevent anticipated and distressing symptom problems from occurring, and to form a
therapeutic relationship with the patient and family.
The length of service for hospice had dropped to a low of 48 days in 2001 and 2002
and has now climbed to a relatively steady average of around 68 days. However a more
accurate measure of the typical hospice patient’s experience is the median length of
service, which was only 19.7 days in 2010, and more troubling, the percent of hospice
patients on service 7 days or less was more than 35% (NHPCO, 2012). The number of
hospice patients on service over 6 months climbed to 11.8% in 2010.
The length of service for hospice has been influenced by several factors. During the
late 1990s hospices received increased government scrutiny focused on patients who
were on hospice care for more than 6 months. In addition the Medicare Hospice Benefit
prevents patients from receiving hospice care while currently receiving “curative” care.
Each hospice provider is allowed to determine which treatments are curative and which
are palliative. There is disagreement over the definition of curative with many treatments
aimed less at cure than prolongation of survival for usually short periods but at considerable
expense. Many patients and families demand continuation of these treatments, thus in
some cases delaying hospice referral or admission. Some of the more progressive hospices
have increased their average length of service by admitting patients that are still receiving
these prolongative treatments. The resulting income has been enough to pay for the
added treatment costs.
Hospice payment under Medicare is governed by regulations referred to as Conditions
of Participation or COPs (Centers for Medicaid and Medicare Services [CMS], 2006).
These rules have been in place since enactment of the Medicare Hospice Benefit (MHB)
in 1983 and specify how hospice care must be organized and delivered to qualify for
payment. Key provisions of the Conditions of Participation require hospices to:
• admit eligible patients with a terminal illness with a prognosis of 6 months or less who
agree not to continue curative treatment and agree to hospice care;
• recertify surviving patients as being terminally ill at specified intervals (90 days, fol-
lowed by another 90 days, followed by ongoing 60 day recertification periods);
• meet administrative requirements including a governing body, an interdisciplinary
team, a plan of care for each patient, a medical record for each patient, a medical
director, regular training, quality assurance, use of volunteers, and maintenance of
professional management of the program; and
• provide core services by hospice employees including a physician, nurse, counselor,
and medical social worker, and provide other noncore services including physical, oc-
cupational, and speech therapy, home health aides/homemakers, medical equipment
and supplies, medications, and short-term inpatient care for symptom management
and respite.
MHB payment is made for each day of hospice care on a per diem basis at one of four
rates: routine home care, continuous home care for crisis periods in lieu of hospitalization,
general inpatient care for severe symptom management, and inpatient respite care to
give up to 5 days break for caregivers.
The COPs underwent revision in 2008, and in the recent health care reform legislation
additional changes were made including a new requirement for a face-to-face visit with a
hospice physician or nurse practitioner to recertify patients every 60 days after the initial
6 months of hospice care.
Several organizations also provide voluntary accreditation for hospices including the
Joint Commission on Accreditation of Healthcare Organizations (JCAHO), Community
Health Accreditation Program (CHAP), and the Accreditation Commission for Health
Care (ACHC). At present almost 60% of hospices are accredited by one of these bodies
(NHPCO, 2012).
Palliative Care
Palliative care is defined as “Patient and family-centered care that optimizes quality of
life by anticipating, preventing, and treating suffering. Palliative care throughout the
continuum of illness involves addressing physical, intellectual, emotional, social, and
spiritual needs and to facilitate patient autonomy, access to information, and choice.”
(Definition recommended by CMS in the revised Medicare Hospice Conditions of
Participation and adopted by the National Quality Forum (NQF), with agreement by
NHPCO and the Center to Advance Palliative Care (CAPC).)
The World Health Organization defines palliative care as:
Palliative care is an approach that improves the quality of life of patients and their
families facing the problem associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification and impeccable
assessment and treatment of pain and other problems, physical, psychosocial and
spiritual. Palliative care:
• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten or postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patient’s illness and in
their own bereavement;
• uses a team approach to address the needs of patients and their families, includ-
ing bereavement counselling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that
are intended to prolong life, such as chemotherapy or radiation therapy, and in-
cludes those investigations needed to better understand and manage distressing
clinical complications. (WHO, 2012).
This definition is much more expansive than that the one used in the United States.
All of hospice care is palliative; however, not all palliative care is provided by hospices.
In the last 15 years primarily hospital-based palliative care has grown in the United States.
The American Hospital Association and the Center to Advance Palliative Care report that
there are now more than 1,635 hospitals in the United States that provide palliative care
services (CAPC, 2012). In addition many hospice programs are now adding palliative
care programs and services for patients who do not qualify for reimbursement as hospice
patients. (see Clinical Practice Guidelines for Quality Palliative Care at http://www.
nationalconsensusproject.org/Guidelines_Download.asp)
Professional Certification
In September of 2006 the American Board of Medical Specialties voted to approve hospice
and palliative medicine as a new subspecialty. Any currently recognized specialty can add
hospice and palliative medicine as a subspecialty. So far 10 cosponsoring boards have
agreed, including Internal Medicine, Family Medicine, Surgery, Anesthesiology, Physical
Medicine and Rehabilitation (PM&R), Obstetrics/Gynecology, Pediatrics, Neurology/
Psychiatry, Radiology, and Emergency Medicine. This important achievement represents
years of work mainly led by the American Academy of Hospice and Palliative Medicine
and the American Board for Hospice and Palliative Medicine (ABHPM).
The National Board for Certification of Hospice and Palliative Nurses (NBCHPN)
continues to certify advanced practice nurses, registered nurses, licensed practical/
vocational nurses, and nursing assistants. As of 2012 there were more than 17,000
professionals certified by ABHPM. The NHPCO and the National Association for Social
Workers now offer an Advanced Certified Hospice and Palliative Social Worker credential.
The Association for Death Education and Counseling (ADEC) Certification program is the
only certification program for those practicing generally in the field of death, dying, and
bereavement. ADEC offers a two-level certification program for thanatology professionals.
ADEC offers Certification in Thanatology and Fellow in Thanatology. Recipients of ADEC
certification are required to undergo the recertification process every 3 years.
Care of the Dying in Institutions
The World Health Organization (WHO, 2006) estimates that there are 57 million deaths
annually worldwide. In the developed world there is a much higher rate of death in
institutions than in the developing world where death continues to come at earlier age
and usually at home. Even in transitional countries like Romania home deaths are still
over 80% of all deaths. In the United States and generally in Europe hospital death rates
are high. In the United States in 2007 36% of all deaths occurred in the hospital and an
additional 7% in the hospital outpatient or emergency department. Nursing home deaths
were reported at 21.7%, while 25.4% were at personal residences. Interestingly 9.9%
were in “all other places.” This catch-all category likely includes many people in assisted
living, as well as those where the location of death was not specified or in nontraditional
locations such as prison, homeless, and in shelters (CDC, 2012).
Care of the dying in institutions continues to be a serious concern. A major study of

dying in institutions was conducted by the SUPPORT Investigators (1995) with funding
by the Robert Wood Johnson Foundation. The study looked primarily at teaching
hospitals and found that overall pain control continued to be poor, patients’ wishes for
care were routinely ignored, and advance directives were often disregarded. In the first
phase of this study only 47% of physicians knew when their patients preferred to avoid
CPR, 38% of patients who died spent at least 10 days in an intensive care unit, and for
50% of conscious patients who died in the hospital, family members reported moderate
to severe pain at least half the time. The development of hospital-based palliative care
has improved this situation in recent years. Along with the recognition of hospice and
palliative care as a subspecialization in medicine it is now more common for patients to
receive a palliative care consult in the hospital by a hospice physician or nurse practitioner.
More and more people are dying in nursing facilities annually. Average survival for
chronically ill patients admitted to nursing homes is estimated to be 18 months (Rothera,
Jones, Harwood, Avery, & Waite, 2002). As such they are a natural population for palliative
care. Hospice care to patients in nursing facilities has been shown to lead to a number
of positive outcomes including: (1) hospice patients had superior pain assessments and
hospice patients in daily pain are twice as likely to receive strong pain relievers than are
nonhospice residents in daily pain; (2) a 93% increased likelihood that patients in daily
pain will have at least some attempt made at managing their pain; (3) lower proportions
of hospice patients compared to nonhospice patients had invasive procedures such as
physical restraints, IV feeding, or feeding tubes; and (4) less likelihood of return to acute
care facilities (Miller, Gozalo, & Mor, 2000).
In 2010 16.7% of hospice patients were admitted in nursing facilities and 18% died
in nursing facilities (NHPCO, 2011), a relative decline from previous years, mainly due to
increased government scrutiny. From these data we can surmise that only about 1% of
hospice patients are transferred from other settings to nursing homes before death. For
the remainder the nursing home was essentially the patient’s home. For the hospice or
palliative care provider, the nursing home staff, along with any other family, becomes the
patient’s de facto family and a recipient of support from the hospice team.
Care for Underserved Populations
Palliative care has spread slowly for many underserved populations. Hospice care in the
United States began mainly in more affluent areas where minority populations were
less well-represented. In the UK hospice has been criticized as deluxe dying for the few
(Douglas, 1992). Over the last 30 years the proportion of minorities receiving hospice
care has increased but is still not believed to be at par with the population (Connor et al.,
2008). In 2010 less than 6% of hospice patients were Hispanic/Latino, about 11% were
African American, and Caucasians accounted for 77% of admissions (NHPCO, 2011).
The prison population is another disenfranchised population that has had limited
access to hospice or palliative care. Since the early 1990s tougher sentencing laws resulting
from the Get Tough on Crime campaign and the Three Strikes and You’re Out law have
increased the number of inmates housed in prisons. The number of inmates housed in
federal, state, and private correctional facilities has increased steadily. During 2010, state,
federal, and private correctional facilities held 2,266,800 inmates, The number of inmates
who died in jails and prisons in 2010 was 4,356. Between 2000 and 2009, suicide (29%)
and heart disease (22%) were the leading causes of deaths in jails, accounting for over
half (51%) of all deaths in jails. Death by drug or alcohol intoxication (7%) was the third
leading single cause of death in jails between 2000 and 2009. No other single cause of
death accounted for more than 5% of jail deaths during this period. Among the causes
of inmate deaths in jails, AIDS-related deaths had the largest decline, decreasing by more
than half (54%) between 2000 and 2009 (Bureau of Justice Statistics, 2011).
Although prisoners are entitled to health care that is commensurate with community
standards, most inmates dying in prison do not have access to end-of-life care that meets
these standards (Craig & Craig, 1999). Over the past decade efforts have been made to
improve hospice and palliative care for inmates (Craig & Craig, 1999; Yampolskaya &
Winston, 2003). However, several challenges remain such as reconciling incarceration
practices with hospice practices, providing palliative care that complies with correctional
goals, providing adequate pain management in an environment lacking of trust between
inmate and staff members, and involving family within the confines of visitation
restrictions. For resources on serving patients in correctional facilities go to the NHPCO
resource page http://www.nhpco.org/i4a/pages/index.cfm?pageid=5371.
Patients with developmental disabilities have also had limited access to hospice
and palliative care. Many with developmental disabilities until recent years had lived in
specialized inpatient facilities and died at relatively early ages. Today only those with the
most profound disabilities are institutionalized, and many are living to older age with the
usual accompanying chronic diseases. One percent of the population is developmentally
disabled, and most now live independently or in group homes. Professionals working with
the developmentally disabled have limited knowledge of palliative care principles, and
palliative professionals have limited knowledge of the special challenges of care for the
developmentally disabled. Patients with physical disabilities also face added challenges
receiving palliative care.
Dying Trajectories
It has been proposed that there are four primary trajectories to dying. They include (1)
sudden death; (2) death from predictable decline such as cancer; (3) death from solid
organ failure, and; (4) death from old age including frailty and/or dementia (Lunney et
al., 2003).
This categorization may oversimplify the variations in the way people die and cer-
tainly some of these trajectories will overlap; however, it is a useful way to understand
most common pathways to death. Obviously those dying suddenly will not be able to
avail themselves of palliative care, except that families may benefit from bereavement
support and some who sustain trauma will have a period of need for symptom control
prior to their deaths.
Caregiver Issues/Gender Roles/Awareness of Dying
One of the factors that makes hospice and palliative care so successful is a focus on
empowerment of caregivers. At the time of admission to a hospice or palliative care
service a thorough assessment of family and caregiver history, needs, and capacities is
done. A defining characteristic of all palliative care is the idea that the patient and family
are the unit of care, not just the patient. By family we mean those who are involved in the
emotional life and care of the person dying, regardless of blood or marital ties.
In palliative care families are taught to do almost anything a nursing professional can
do, to the extent that the family member has the internal strength or ability to do this work.
One of the reasons it is thought that families do better in bereavement after participating
in hospice care (Connor & McMaster, 1996; Schulz, et al., 2001; Christakis & Iwashyna,
2003) is due to their effective involvement in caregiving. Postdeath, noncaregivers have
been found to show more depression and weight loss.
To facilitate their involvement many families will need support. The International Work
Group on Death, Dying, and Bereavement has published Assumptions and Principles for
Psychological Care of Dying Persons and Their Families (Psychological Work Group of
the International Work Group on Death, Dying, and Bereavement, 1993), which includes
a statement on families’ need to be cared for in order to give care.
Caregiving can lead to positive outcomes as well as stressful negative outcomes.
What determines positive or negative outcomes in caregiving depends largely on timing,
circumstances, and perception of the meaningfulness of the work (Folkman, 1997; Schulz
et al., 2001). In general caregiving that is time-limited in some way is easier to cope
with, as in the case of hospice care. When caregivers perceive their job of caregiving as
personally meaningful there is less stress and when the relationship to the person cared
for is not an ambivalent one.
Caregiving in the United States is primarily done by women, who comprise 75%
of caregivers. Two-thirds of caregivers are also employed and are between 35 and 64
years old. Numerous resources on caregiving can also be found on the Caring Connec-
tion website (http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3279) including
information on physical caregiving, comfort care, services available to assist caregivers,
and caring for the caregiver.
Awareness of dying remains a difficult issue for dying persons and their caregivers.
The term conspiracy of silence was used by Glaser & Strauss (1965) to describe the
phenomena of physicians and families conspiring to keep information on the seriousness
of a patient’s condition from them. The underlying premise is that if you tell a patient
he or she is dying it will result in the patient becoming depressed, giving up, and dying
sooner than he or she might otherwise have if he or she remained in blissful ignorance.
The problem with this premise is that patients usually know how serious their
condition is even if not told directly. Instead of being protected from difficult information
the patient is left in what Weisman (1972) refers to as a state of lonely apprehension. The
more the conspiracy of silence is maintained the worse the situation gets. This example
illustrates a circumstance where what one is trying to do to solve the problem actually
makes the situation worse as honest communication becomes more difficult to convey
over time. Most of what we perceive to be denial on the part of the patient or family is
generally in the service of preserving interpersonal relationships. Avoiding discussion of
the seriousness of the patient’s condition is due to fear that open communication will
somehow harm the person or drive people away, when it is the lack of communication
that is really creating discomfort.
What is known about the impact of truth telling on a dying person’s emotional state
is that, after a sometimes strong emotional reaction to the bad news, the patient usually
adapts to the situation or chooses to ignore the information. No research has ever shown
that telling a patient an accurate prognosis has any negative impact on survival. In fact
some research has shown that truth telling can result in positive responses (Connor, 1992).
And some research indicates that open family communication about dying can have a
positive impact on the health and survival of widowed persons (Christakis & Iwashyna,
2003; Connor & McMaster, 1996).
In fact we now have growing evidence that the delivery of palliative care may lead to
improved survival in patients themselves (Connor, Pyenson, Fitch, & Spence, 2007; Temel
et al., 2010). We do not know how palliative care is associated with improved survival,
and it runs counter to the philosophical notion that we neither hasten nor prolong dying,
but we may speculate that palliative patients get better general care management and
may avoid some of the perils of aggressive treatment in our health care systems.
43
Chapter 6
Ethical and Legal Issues Related to

Dying and End-of-Life Care
Madeline Jacobs
The American medical system is fraught with ethical dilemmas at every turn: Should
children be immunized against infectious diseases? How much risk is acceptable in testing
new therapies and treatments? How should scarce health care resources be distributed?
What are the right treatment decisions for any given situation? Should embryos be
utilized to find new treatments? Should women be given the legal right to terminate
pregnancies? When does life start? When does it end?
Is access to health care an issue of justice? Is it a right or something that should be
earned? Is rationing health care morally or ethically defensible? How is rationing defined?
Many people warn of rationing if we switch to a national health care system, but health
care services are already unavailable to tens of millions of Americans based on the ability
to pay. Isn’t that rationing? Who should be entitled to health care services? Can the
country afford to provide ideal benefits based on the answers to these questions?
The last 30 days of a beneficiary’s life account for the highest portion of Medicare
dollars per member. In fact, one-fourth of the entire Medicare budget is spent in the last
year of a patient’s life and, of that amount, 40% is spent in the last 30 days. With the cost
of health care skyrocketing and limits on access imposed by cost, availability of resources
(hospitals, doctors, medications), should there be a discussion on whether it is ethical to
spend so much at the end of life, at the expense of dental care, primary care access, and
treatment for younger patients?
Who really makes the decisions about acceptable practice, access to resources, or
accepted definitions of life and death? There is no single answer, but a continually evolving
process, with multiple stakeholders and contexts. Technology, a disjointed funding
system, and a heterogeneous population have created a complex, often confusing web
of competing interests and information for each situation.
According to the U.S. History Encyclopedia, bioethics “addresses the moral and ethical
issues arising from clinical practice, medical and biological research, resource allocation, and
access to biomedical technology.” Modern bioethics has been shaped over the past century
by social, political, and technological developments. It provides a theoretical foundation
for sifting through the multiple interests and complex issues involved in caring for patients
at the end of life and is based on the central concept of patient autonomy. Several core
concepts pertinent to bioethics are examined in Table 1.
Table 1
Core Bioethical Concepts
Autonomy: The right to make decisions about one’s own life and body without
coercion by others. To have the right to act in terms of your own values.
Beneficence: Doing what’s best for the patient, helping others
Nonmaleficence: Do no harm
Justice: Treating each patient impartially
Distributive Justice: Assured access to care
Capacity: The degree to which a person is able to understand health care options and
make decisions for themselves. A person’s capacity is task specific and is determined
in context to each situation.
Competence: A legal term. A person is assumed competent to act and decide for
unless a judge legally declares otherwise. A judicial declaration of incompetence can
be global—when a person can’t make any kinds of decisions for himself or herself,
or limited to specified decisions, such as financial matters, personal care or medical
decisions.
Paternalism: Doctor knows best—any action, decision, rule, or policy made by a
physician or other caregiver, or a government, that dictates what is best for the
patient without considering his/her own beliefs and value system and does not
respect patient autonomy.
Substituted Judgment: When someone else makes decisions for an incapacitated
or incompetent patient by making all efforts to determine the preferences of the
patient—how the patient would have decided if capable—based on whatever
evidence can be found.
Foundations of Modern Bioethics

Modern physicians still take the Hippocratic Oath—a pledge to follow moral standards in
their practice. While it has been updated since the days of ancient Greece, the Oath still
reflects a deeply held belief in the physician as a healer and critical member of society.
Traditionally, good and evil have been defined by religious traditions. Good people follow
God’s law and evil people don’t. Before the late 18th and early 19th Century, all ethics
and moral discussions were based in the belief that all good comes from a God or creator.
Ethical and Legal Issues Related to Dying and End-of-Life Care 45
In the 18th and 19th centuries, philosophers and politicians began to develop social
contract theories that were independent of a belief in God. These theories were based in
the belief that people need rules to rise above their base natures and live in society. The
work of the philosophers Immanuel Kant, Jeremy Bentham, and John Stuart Mill deal with
how people can live together in society productively and what ideals and values should
help shape behavior and relationships within that society. These philosophers thought
about why people should behave morally and how a society should assign benefit to an
action.
Immanuel Kant believed that people should behave morally because it is the right
thing to do as a duty, not because they feel like doing the right thing. He also was an
elitist who believed that most people weren’t capable of following moral, ethical rules.
The essential ideal for the Utilitarians in late 18th and 19th century England was to provide
the greatest benefit—good—for a maximum number of people. The Utilitarians were
focused on outcomes and were not interested in intentions. These broad theories often
don’t apply to complex, nuanced situations. What the rules say—rule utilitarianism—
is different from how people act—act utilitarianism. Utilitarianism is a central tenet of
public health and triage, the goals of which are to help as many people as possible while
deciding how to allocate scarce resources.
Mill’s work On Liberty in 1859 places bioethics in a political context. Are questions
of life and death public or private concerns? Mill’s harm principle posits that private
actions only become public when someone is harmed in the doing. He states “that the
only purpose for which power can rightfully be exercised over any member of a civilized
community, against his will, is to prevent harm to others. His own good, either physical
or moral, is not a sufficient warrant… Over himself, over his own body and mine, the
individual is sovereign” (Mills, 1859, p. 62).
This idea of individual as independent from the state or community is a very modern,
Western value. It is a fundamental building block in the American principle of patient
self-determination. In practice, however, it often clashes with the values of patients
and providers who come from cultures and communities that hold more traditional,
paternalistic views of individual rights.
In a secular, pluralistic society such as the United States, there is no state-sanctioned
religion that provides parameters and definitive judgments to solve ethical dilemmas.
Modern bioethicists build on early ethical theorists and develop systematic approaches
to morality and ethics to guide practitioners. For example, there is in the medical ethics
literature a debate between the views of Tom Beauchamp and James Childress (2001),
known as the Georgetown mantra, and a moral system proposed by Gert, Culver, and
Clouser (1997). The Georgetown mantra provides four ethical principles—autonomy,
nonmaleficence, beneficence, and justice (see Table 1 with core bioethical concepts for
definitions). Gert, Culver, and Clouser (1997) propose a moral system based on 10 rules
and five ideals:
The Ten Moral Rules:

1. Do not kill.
2. Do not cause pain.
3. Do not disable.
4. Do not deprive of freedom.
5. Do not deprive of pleasure.
6. Do not deceive.
7. Do not cheat.
8. Keep your promise.
9. Obey the law.
10. Do your duty.
The first five always lead directly to harm if violated. The second five, if violated,
often lead to harm, but not as directly as the first five.
The Five Moral Ideals:
1. Prevent or reduce (risk of) death.
2. Prevent or reduce (risk of) pain.
3. Prevent or reduce (risk of) disability.
4. Prevent or reduce (risk of) loss of pleasure.
5. Prevent or reduce (risk of) loss of freedom.
Practitioners look to such academic debates for guidance in dealing with real-
life situations and conflicts, and judges and legislators look to them when developing
legislation and determining legal precedent.
Patient Self-Determination
The American ethic of patient self-determination developed over the course of the 20th
century and was shaped largely in the legal arena. Each of these landmark cases further
shifted the balance of power in medical decisions from the provider and the community
to the patient.
In 1914, a New York State Court of Appeals judge, Benjamin Cordozo (who went
on to serve on the Supreme Court of the United States), ruled in Schloendorff vs. the
Society of the New York Hospital that “Every human being of adult years in sound mind
has a right to determine what shall be done with his or her own body; and a surgeon
who performs an operation without the patient’s consent commits an assault for which
he is liable for damages…. This is true except in cases of emergency when the patient is
unconscious and when it is necessary to operate before consent can be obtained.”
This ruling signaled a significant shift in health care norms. Historically, the relationship
between physicians and patients was one of paternalism—father knows best—where the
physician is the father figure. Basically, doctors made the decisions for patients, often
without consulting the patient or obtaining consent.
While the 1914 Cordoza ruling enhanced the legal standing of patients to control
their own health care decisions, it took a long time for informed consent to become a
standard of medical practice. In 1961, a study by Oken found that 90% of physicians
at Michael Reese Hospital reported that they withheld cancer diagnoses from patients in
order to “sustain and bolster patient hope,” even though earlier studies had established
that patients overwhelmingly preferred to know their diagnoses.
The Oken study was published at a time of great social and political change. America
in 1960 was in social upheaval, when the society at large began to reject paternalism and
individualism became the norm in all aspects of life. People didn’t want to just do what
they were told anymore.
A number of movements sprang up with different groups of people—minorities,
women, consumers—asserting their right to participate fully in society. The idea of a
patient’s right to decide the course of treatment was a natural outgrowth of the civil
rights and women’s rights movements, and the Oken study added fuel to the fire.
When the study was repeated by Novack and colleagues less than 20 years later in
1979, a full 97% of the physicians reported telling cancer patients their diagnoses.
The 1991 Patient Self-Determination Act
In the years following Schloendorff, the courts established the parameters of informed
consent by considering the rights of patients to information and their role in medical
decision making. Some cases were about patients who didn’t want to know their
diagnoses. In Cobbs vs. Grant (Cal 1972), the court ruled that “a medical doctor need not
make disclosure of risks when the patient requests that he be not so informed” (Mosk,
1972, p. 12).
Two landmark cases of young women who suffered massive brain damage and were
kept alive artificially, Karen Ann Quinlan and Nancy Cruzan, dealt with making end-of-life
decisions for incapacitated patients who didn’t leave a written record of their preferences.
The cases ultimately led to the Patient Self-Determination Act in 1991.
On November 5, 1990, Congress passed the Patient Self-Determination Act (PSDA) as
an amendment to the Omnibus Budget Reconciliation Act of 1990 (see chapters on end-
of-life decision making). Concurrent to these legal developments, the delivery of medical
care became more impersonal and institutionalized. The relationship between physicians
and patients was transformed by increasingly sophisticated treatment technologies and
medications. The ethical responsibility to treat the suffering and pain caused by these
interventions became recognized as a requirement of good care.
Redefining the Goals of Care at the End of Life
It may seem immaterial to study the ideas of the ancient Greeks, Christians, and European
philosophers, but they have profound influence on how we continue to define the
roles and responsibilities of society, physicians, and patients. Modern technology blurs
the definitions of good care—what does it mean to heal, especially at the end of life?
The technological imperative seems to point to doing everything possible technically to
preserve life, because it’s possible. But the suffering caused by such a course of action
can be seen as doing harm to the patient, who is in the last stages of life and can never
be cured and put whole. What constitutes compassionate, competent care in these
situations?
The Intensive Care Unit (ICU) is the hospital location where patients at the end of
their lives are brought. According to Joseph Fins, “In the face of end-stage disease, these
patients are often over-treated, subjected to poor pain management, and deprived of
contact with family as death approaches” (p. 153). Surveys have shown that patients find
routine ICU treatments and tests, such as arterial blood gasses, to be extremely painful.
Why should patients at the end of their lives be subjected to these tests and procedures
which do not contribute to appropriate end-of-life goals of care?
The ICU is a prime example of how death is equated with failure in the culture of a
hospital. Illness is attacked as an enemy and seen mostly as a physical problem. Symptoms
and system failures are treated by specialists who myopically see only the part or system
that they know how to treat, without regard to the whole prognosis or stage in life.
One result of all this patching together is to confuse the patient and families into
thinking that the patient is actually getting better or recovering, rather than extending
the dying process technologically. Many of the technologies currently used in the course
of routine hospital care, such as cardiopulmonary resuscitation, were created to save lives
on the battlefield. Instead of stabilizing young soldiers so they could recover and go on
to lead productive lives, these technologies are used routinely to bring old and ill bodies
back from the dead. In essence, medical technology has created a form of what Nancy
Dubler calls “life in death on machines” (p. 260).
The hospital team has managed to bring patients back from the brink of death
multiple times, allowing them precious time with their families and renewed hope for
more such miraculous escapes. Thus, the family is understandably confused when the
medical team tells them that any further treatment would be futile and may do more
harm than good. Modern medicine has worked its last miracle and there are no other
treatments, medications, surgeries, or interventions to plug the dike of death.
The issue of futility is a tricky one and is compounded by other issues, such as culture,
religion, and even politics. For example, minority patients may believe that they are not
being offered all that is available and that, based on history, they are being discriminated
against. Studies show definitive disparities in access to, and levels of, care for racial and
ethnic minorities. In addition, the United States has a shameful history of knowingly using
minorities (and servicemen) as subjects in scientific research. The most famous case was
the Tuskegee Study in which 399 African American men with syphilis were purposefully
left untreated in order to study the long-term effects of the disease. Given this context,
why should minority patients trust that hospitals are really providing them with all the
best care that they deserve?
In 1995, the results of the Study to Understand Prognoses and Preferences for
Outcomes and Risks of Treatments (SUPPORT) were published. The investigators found
that less than half of the physicians knew their patients’ wishes regarding do not resuscitate
(DNR) orders, almost half of the DNR orders were written within 2 days of death; 38%
of the patients who died spent 10 days or more in the ICU, and family members reported
that conscious patients who died were in severe or moderate pain at least 50% of the
time. An intervention aimed at improving physician–patient communication at the end of
life failed to improve any of the indicators.
The SUPPORT study revealed that people were suffering terrible deaths in hospitals,
in pain and with no power to control the last stage of their lives. In essence, technology
has outstripped our ability to effectively treat dying patients and ignores the final stages
of decline and disease. Not surprisingly, a right to die movement has sprung up, calling
for people’s right to avoid such painful and humiliating ends. In his self-written obituary,
Derek Humphrey (2005), the founder of the Hemlock Society, wrote that his purpose for
writing the Final Exit was to educate and advise thousands of dying people to know how
to bring about their peaceful ends when dying, trapped in a ruined body, or just plain
terminally old, frail, and tired of life.
The SUPPORT study was a wake-up call to the medical profession. In essence, the
choice being provided to patients at the end of their lives was to either suffer or commit
suicide. This dilemma was unacceptable, and the medical establishment began to look
for alternatives and new methods of treatment to improve these choices. An entirely
new medical specialty, palliative medicine, has developed specifically to better treat
people at the end of life and recognizes the relief of suffering as a central goal of care.
Other solutions, such as the expansion of hospice and palliative care units into hospitals,
community palliative care, slow medicine, and many new laws and tools for documenting
and following patients’ wishes continue to be developed, based on a constantly evolving
foundation of legal precedent.
51
End-of-Life Decision Making

Chapters 7 – 13
Chapters 7 through 13 focus on end-of-life decision making.

The Body of Knowledge defined this major category of thanatology
in this way: the aspects of life threatening illness/terminal illness
that involve choices and decisions about actions to be taken, for
individuals, families, and professional caregivers.
The seven chapters of Part 2 focus on end-of-life decision making

in terms of these indicators: culture and socialization, religion and
spirituality, historical and contemporary perspectives, life span issues,
the family and larger systems, and ethical and legal issues. Four of the
chapters (7, 9, 10, and 11) were revised from chapters found in the
first edition, one (chapter 8) was carried over unchanged, and two
chapters are wholly new: Chapter 12 on ethical and legal issues, and
chapter 13, an Irish perspective on end-of-life decision making.
53
Chapter 7
Culture, Socialization, and End-of-Life

Decision Making
Andrea C. Walker
Culture is multifaceted, multidimensional, and embedded in time and history. Culture

involves a series of interactions and adjustments, negotiations and agreements of a
person, or group of people, with their environment. Interwoven into culture is a series
of expectations, perceptions of “rightness” regarding sources of power, values, social
structures, religion, etc. Socialization involves learning the rules, beliefs, and expectations
within a particular society, many of which are influenced and/or defined by culture.
Culture has been suggested to encompass an even broader contextual overlay of
variables such as spirituality, religiosity, age, gender, sexual orientation, socio-economic
status, and health/disability status (Hayslip, Hansson, Starkweather, & Dolan, 2009). The
degree of acculturation to the dominant group’s values adds further nuances; a Muscogee
Creek Indian, for example, may integrate into mainstream culture for employment and
social group while a member of his or her family speaks only his or her native tongue.
Cultural diversity is highly complex, especially in relationship to end-of-life decisions, and
there may be much more variation within than between groups. Kagawa-Singer and
Blackhall (2010) recommended “finding a balance between cultural stereotyping and
cultural empiricism…by neither disregarding culture nor assuming one is part of a list of
stereotypical characteristics” (p. 331).
This chapter thus provides a description of research findings about end-of-life
decisions as influenced by individuals’ socialization processes within cultural contexts. It
provides an overview of five general groups’ cultural values related to death, and then
presents findings on end-of-life decisions related to those cultural values. This chapter
does not deeply explore the values within each culture. Any reference made to a particular
group rests on the assumptions that (a) there may be only a few commonalities among
the group members and (b) an overlay of individual and situational factors defines the
experience. All of those factors cannot be discussed in this venue, but I encourage readers
to consider the information presented here with that in mind.
Cultural Values Regarding End-of-Life Decisions

in the United States
The impact of Western medical ethical principles on Caucasian Americans’ end-of-
life decisions cannot be overstated. The principles promote: (a) beneficience, honesty,
respect, and all possible benefit to the patient; (b) nonmaleficence, bringing no harm
to the patient; (c) justice in matters of health care; and (d) patient autonomy. Such
principles have been taken so seriously that they have been legislated into public policy
with the Patient Self-Determination Act (Henig, Faul, & Raffin, 2001), which was passed
as part of the Omnibus Budget Reconciliation Act of 1990 to increase patient autonomy
regarding treatment options, advance directives, and when to discontinue treatment
(Young & Jex, 1992). The passing of the Patient Self-Determination Act has brought up
ethical issues revolving around withholding and/or withdrawing treatment, as well as
more controversial issues of: (a) physician-assisted suicide, obtaining a physician’s aid in
committing suicide; (b) indirect euthanasia, the physician allowing a patient to die using
more passive, less intrusive means, and; (c) direct euthanasia, the physician’s purposeful
intervention to hasten death (Horacek, as cited by Marrone, 1997). As such, Caucasian
Americans typically consider the patient’s quality of life and do not always opt for life-
prolonging treatments.
Cultural conflicts with the principles around the Patient Self-Determination Act have
been explored in literature (Werth, Blevins, Toussaint, and Durham, 2002). A benefit to
Caucasian Americans may be perceived differently by other Americans. For instance,
“the humane choice” of removing a ventilator from an infant whose brain is severely
injured may be a cultural assault to a father from a Saudi culture embedded in Islamic
values (Sayeed, Padela, Naim, & Lantos, 2012). Moreover, removal from tube feeding
of a terminal, unconscious patient to minimize suffering may be perceived as giving up
to some in an African-American culture. As respect for the patient’s value system and
justice in treatment are likely to be important in all cultures, components of value systems
and perceptions of justice may diverge. The idea of fidelity, forthright communication
from the physician regarding the patient’s diagnosis, prognosis, and treatment options,
while important in the dominant culture, may seem cruel and inappropriate to some
Chinese Americans (Yeo, 1995). Finally, the value of autonomy may not be seen as self-
determination in many cultures, as it is in the United States (Winzelberg, Hanson, & Tulsky,
2005). Furthermore, some have challenged the idea that the Western view of autonomy
is always in the best interest of the patient. Hallenbeck, Goldstein, and Mebane (1996)
described the ethical principles in the United States as having “sustained and reinforced a
pervasive reductionism…and dominance of self-interest in decision making…” (p. 394).
Quite simply, members of minority cultural backgrounds may not share dominant U.S.
values of independence, self-reliance, and fear of being dependent on others as a result
of lingering treatment (Kagawa-Singer & Blackhall, 2010).
Culture, Socialization, and End-of-Life Decision Making 55
Sociohistorical Context and Meaning of Death

Each major cultural group in the United States evolves from unique sociohistorical
contexts, enveloped in experiences encompassing country of origin, religious background,
immigration to the United States, and position in mainstream society. Psychosocial and
demographic variables such as age, socio-economic status, religion, education, perspective
of health care, and meaning of death may account for the variation within cultural groups.
For instance, in a study of older adults’ personal preferences if faced with terminal illnesses
and/or physical conditions (Cicirelli, 1997), many older adults were socialized to regard
the physician as authority figure and, thus, themselves as having less decision-making
authority in their health care. In addition, African-American participants’ end-of-life
decision preferences remained consistent across circumstances, socio-economic status,
and religiosity, suggesting that the unique social history may have helped form a strong
sense of survival in the face of trauma unique to the culture (Cicirelli, 1997).
African-Americans as a group tend to have a strong focus on religiosity, often in
Protestant Christianity, believing that suffering is redemptive and that God has more
authority over life and death than physicians (Kagawa-Singer & Blackhall, 2010). Research
has found that African-Americans favor health care that prolongs life at a significantly
higher rate than Caucasian (Hopp & Duffy, 2000; McKinley, Garrett, Evans, & Danis,
1996; Shrank, Kutner, Richardson, Mularski, Fischer, & Kagawa-Singer, 2005; Winter
& Parker, 2007), and this choice for prolonging life appears to be related to a strong
sense of religiosity (Mitchell & Mitchell, 2009). In addition, there may be a legitimate
lack of trust by African-Americans in the medical establishment (Bullock, 2006) based
on experiences of injustice in health care, disregard for autonomy, and disproportionate
involvement in research and experimentation. Several historical events, including but not
limited to slavery; medical experimentation; the Tuskegee syphilis experiment, in which
treatment was knowingly withheld from patients to track their digression; and lack of
federal funding when AIDS spread to the African-American community (Dula, 1994),
along with social pressures of economic challenges and unequal rates of incarceration
(Crawley et al., 2000), have resulted in some African-Americans questioning whether
they should trust the health care system (Amelle, Lawrence, & Gresle, 2005). Research is
mixed, however, suggesting diversity within the group. For example, African-Americans
have more commonalities than differences with Caucasian in their perspectives of tube
feeding elders with dementia (Modi, Velde, & Gessert, 2010), communicating prognosis to
those with terminal illnesses, and favoring patient autonomy over family decision making
(Blackhall, Murphy, Frank, & Mischel, 1996). Furthermore, older African-Americans and
Caucasian were later found to be similar in terms of their death-related fears (Cicirelli,
2000). African-American ambulatory cancer patients, indeed, reported trust in the health
care system and feeling that physicians treated them equally well, regardless of race
(McKinley et al., 1996).
The term American Indian covers over 500 tribes in the United States, each with its
own cultural considerations. Much of the current culture within each tribe is influenced
by the degree of acculturation and the influence of Christianity (McCabe, 1994). Some
sociocultural commonalities may be observed. Many American Indians experience
distrust in mainstream health care and educational systems (Walker, 2009), resulting from
a history of forced acculturation, relocation, and dishonored agreements with the U.S.
government. In some tribes, such as the Muscogee Creek, children attended boarding
schools where they were not allowed to use their native language (Thompson, personal
communications, 2002), accelerating their evolution away from their native culture.
Spirituality is a part of every facet of life, especially for Chippewa (Stately, 2002), though
largely ignored throughout history. Many tribes were at one time based on a communal
structure, relying on consensus for decision making (Chaudhuri & Chaudhuri, 2001).
Navajos have a strong sense of autonomy, though decisions are typically made with input
from other tribal members, making the Western ethic of confidentiality seem strange
(McCabe, 1994). Finally, American Indians often have a particular disposition toward
a balanced perspective of life and a more accepting position toward death; death is an
event neither to be feared nor anticipated (Walker& Balk, 2007).
Hispanic Americans are comprised of many diverse groups, including Mexicans,
Cubans, Puerto Ricans, and Latin Americans with traditions influenced by both Spain
and Africa. Representing a growing population in mainstream United States, there may
be a few similarities across groups despite the diversity. Many of these groups openly
celebrate Day of the Dead to remember their loved ones, indicating a familiarity and
acceptance of death, as well as emphasis on remembering family after death (Soto,
personal communications, 2000). Importance of family appears to be common across
most groups, and end-of-life decisions may be based on the family rather than the
individual wishes; in fact, Hispanics are more likely to prefer family-centered decision
making than any other group (Kwak & Haley, 2005) though they report a strong value
of autonomy, similar to African and Caucasian Americans, when facing death (Volker &
Wu, 2011). Religious beliefs, usually Roman Catholic, are often intertwined with the view
of death as natural, though caused by sin, and as a path to resurrection (Miller, 2002).
Many Mexican Americans thus see life and health as a gift from God, and enduring the
suffering of sickness may be a sign of strength (Klessig, 1992).
Asian-Americans represent yet another vastly diverse category of minority cultures
in the United States, comprising Chinese, Japanese, Filipino, Vietnamese, Korean, Native
Hawaiian, among numerous others. Many immigrated to the United States during
several waves over the past 200 years, enduring some U.S. resistance evident in the
Chinese Exclusion Act of 1882 and the Oriental Exclusion Act of 1924. Many Asian-
Americans, except Filipinos who are dominantly Catholic, originate from Buddhist and
Taoist backgrounds (Braun & Nichols, 1996), in which death is not distinct from life, is
a conditioned state, and is impermanent (Kawamura, 2002). This Buddhist perspective
may influence the decision of several groups, including Chinese, Japanese, Filipino,
Asian/Pacific Islander, and others, to enroll in hospice less frequently, and have shorter
stays when they do enroll, than Caucasian patients (Ngo-Metzger, Phillips, & McCarthy,
2008). Chinese incorporate the Buddhist value of not causing suffering or burden on
others (Bowman & Singer, 2001). Native Hawaiians experienced much loss of life upon
their initial contact with the West when European missionaries arrived on their islands a
few centuries ago. Influenced by a combination of Christianity and their native religion,
Native Hawaiians appear to accept death as a transition to the next life (Braun & Nichols,
1996). Koreans tend to perceive death as return to familial, cultural, and spiritual homes
(Kwon, 2006). The value of duty to family or filial piety, respect and care for one’s parents
and elders in the family, influences end-of-life decisions in Asian groups, particularly the
Chinese (Bowman & Singer, 2001; Yeo, 1995) and Asian Indian families (Sharma, Khosla,
Tulsky, & Carrese, 2012).
Research About End-of-Life Decisions and Culture
Members of mainstream European American culture are more likely to have knowledge
and use of advance directives, withdraw life-sustaining treatments in futile conditions, and
support physician-assisted suicide than those of minority cultures. As a whole, minority
cultures tend to be less supportive of decisions that result in earlier death.
Advance Care Planning
Advance care planning provides family and health care with a person’s treatment
preferences prior to incapacitation through the living will, written specification regarding
administration of life support due to terminal illness, and durable power of attorney,
giving another person legal authority to make one’s medical decisions when he/she is
unable to do so (Doukas & McCullough, 1991). Caucasian Americans have shown to be
the most likely group to have advance directives, with African-Americans and Hispanics
significantly less likely (Carr, 2011). African-Americans were more likely to have negative
attitudes toward advance directives due to distrust of the system, lack of access to health
care, increased spirituality, a survivalist view of suffering and death, influence of social
support systems, and other unknown reasons while controlling for socio-economic status
(Bullock, 2006; King & Wolf, 1998; Kwak & Haley, 2005; McKinley et al., 1996). Because
elderly Chinese rely on their children, they may see little value in advance care planning
(Bowman & Singer, 2001). Braun and Nichols (1996) found that few Native Hawaiians
had a living will, as property typically goes to the spouse and children, and family carried
out the dying person’s verbal wishes regarding death and/or funeral. Also, many Japanese
participants actually had advance directives, Chinese believed in them but few had them,
some Filipinos had them if they had been in the United States long, and Vietnamese
participants were typically not familiar with advance directives (Braun & Nichols, 1996).
Life Support/Tube Feeding
Life support involves the use of mechanical devices such as intravenous tube feeding to
sustain life when the patient would not otherwise remain alive. Repeatedly throughout
literature, research indicates that African-Americans more strongly prefer the use of
life support regardless of physical condition than other cultural groups (Amelle et al.,
2005; Caralis, Davis, Wright, & Marcial, 1993; King & Wolf, 1998; Kwak & Haley, 2005;
McKinley et al., 1996; True et al., 2005) although some research suggests similar attitudes
in African and Caucasian Americans (Modi, Velde, & Gessert, 2010). Hispanics seem to
prefer life-prolonging treatment (Caralis et al., 1993), but women reported not wanting
a feeding tube (Duffy, Jackson, Schim, Ronis, & Fowler, 2006). To increase longevity, the
likelihood of Chinese families to choose life support if the dying person is younger than
expected also increases (Yeo, 1995). Elderly Chinese may actually prefer to not engage
in life-sustaining treatments in futile conditions, even though their children may feel an
obligation to do so (Bowman & Singer, 2001). When compared to Caucasians, non-
Jewish participants, Chinese, Filipino, and Korean Americans were much more likely to
agree to start, as well as less likely to terminate, life support, and Iranians, whose Muslim
beliefs dictate that no one has the right to choose death, usually oppose terminating life
support regardless of condition (Klessig, 1992). For Orthodox Jews, life support may be
continued in any situation, but for non-Orthodox Jews the dying process should not be
prolonged (Klessig, 1992).
Communication About Medical Condition
Many minority cultures in the United States, including Chinese, Japanese, Korean,
Ethiopian, Greek, Italian, French, Eastern European, Mexican, Central and South
American, and Native American believe that withholding the truth about a terminal
medical condition from a person is more compassionate and ethical, and disclosure of
information regarding diagnosis, prognosis, and treatment preferences is discouraged
(Kagawa-Singer & Blackhall, 2001; Kwak & Haley, 2005). Japanese resident physicians
are more likely than U.S. residents to discuss medical information with family before
the patient (Gabbay et al., 2005). As full disclosure may be seen as distressing in some
Hispanic families (Yeo, 1995), the value of filial piety may also make it difficult for some
Chinese Americans to communicate bad news, as this disclosure may cause harm and
discouragement to the dying person (Muller & Desmond, 1992; Orona, Koenig, &
Davis, 1994; Yeo, 1995). Some studies have indicated that such communication is not
discouraged among many African and Caucasian Americans (Kagawa-Singer & Blackhall,
2001), as well as some Hispanics (Caralis et al., 1993). African-Americans request more
spiritually oriented information, however, while Caucasian Americans prefer more
information about medical options and associated costs (Shrank et al., 2005).
Locus of Decision Making
Whether a culture has a tendency toward individual or family/communal structure
heavily influences who makes decisions. Personal autonomy may be less important in
many cultures than in the mainstream United States Asian and Hispanic Americans tend
to prefer removing the burden of treatment decisions from the patient, while African-
American families tend to promote the individual person’s wishes (Kwak & Haley; 2005).
African-Americans do prefer to include more family, friends, and spiritual leaders in end-
of-life discussions, however, while Caucasian Americans are more exclusive (Shrank et
al., 2005). Chinese, Hispanic, Korean, Filipino, and Mexican Americans are much more
likely than European or African-Americans to believe the family should be the primary
decision maker (Kagawa-Singer, 2001; Klessig, 1992; Orona et al., 1994; Yeo, 1995), and
Japanese resident physicians are more likely than U.S. residents to fulfill families’ choices
over individual patients’ choices (Gabbay et al., 2005). Some Hispanics are more likely to
refer to the physician’s recommendation (Caralis et al., 1993). In a case study by Carter
and Sandling (1992), an American Indian mother deferred to the tribal elders her decision
whether to allow her tragically deformed child to be kept alive by intravenous feeding,
demonstrating the cultural tendency to consult group opinion when making individual
choice.
Autopsy and Organ Donation
The dominant U.S. culture finds little ethical dilemma with either autopsies or organ
donations, but some Asian groups have indicated otherwise. Chinese have divergent
opinions of wanting to help others while not wanting to destroy their bodies, seen as
gifts from parents; Japanese indicated hesitance to mutilate the body but acceptance,
with Buddhist desire to help others, as long as body appeared intact; Filipinos indicated
a greater tendency to agree with the longer time spent in the United States; Vietnamese
were generally against organ donation because of not wanting to be born into the next
life missing an organ (Braun & Nichols, 1996). Those Asian-Americans who do intend to
donate organs are motivated more by social responsibility than individual rights (Park,
Shin, & Yun, 2009). Hispanic Americans reported willingness to donate or receive an
organ from a family member but great hesitation in discussing the donation with the
person (Siegel, Alvaro, Hohman, & Maurer, 2011). Mexican Americans tend to prefer not
having autopsies or organ donations because of the beliefs that the soul remains with
the body for some time after death and that making such plans before death is equitable
with giving up on treatment (Perkins, Supik, & Hazda, 1993). African-Americans, on the
other hand, tend to concur with the Protestant Christian belief that the soul leaves the
body upon death and may be more likely to choose autopsies and to help others through
organ donation (Perkins et al., 1993). Additional evidence indicates that willingness to
donate organs is much lower in African than Caucasian Americans (Lichtenstein, Alcser,
Corning, Bachman, & Doukas, 1997). Distrust in the health care system contributes to
negative attitudes, but the relationship varies according to education level, marital status,
and other factors (Russell, Robinson, Thompson, Perryman, & Arriola, 2012). American
Indians, traditionally desiring to enter the spirit world with an intact body, are reexamining
beliefs based on high need due to prevalence of diabetes (Fahrenwald & Stabnow, 2005).
Suicide and Euthanasia
This controversial topic has received diverse opinions, even from members of mainstream
U.S. society. In Lichtenstein et al.’s (1997) comparison study of African and Caucasian
Americans, both supported legalizing voluntary and physician-assisted suicide, but
Caucasian were much more likely than African-Americans to request it themselves (Caralis
et al., 1993), possibly due to a stronger religious commitment and cultural condemnation
of suicide among African-Americans. Wasserman, Clair, & Ritchey (2005-2006) found

that, though African-Americans distrust the health care system, their attitudes toward
euthanasia seem to be due to spiritual issues. Mexican Americans also have much less
positive attitude toward assisted suicide (Mouton, Espino, Esparza, & Miles, 2000). Native
Hawaiians are tolerant of suicide and in favor of passive euthanasia; Chinese tend to
believe that suicide is wrong except in cases of rape and prisoners of war, and euthanasia
is generally acceptable if it reflects the person’s wishes and does not damage filial piety;
Japanese are tolerant of suicide and support the family’s decision in euthanasia; Filipinos
are generally not supportive of suicide or euthanasia; Vietnamese usually believe suicide
is wrong and accept euthanasia only if family cannot afford continued health care (Braun
& Nichols, 1996). These Asian group differences appeared to reflect education level and
length of time in the United States (Braun & Nichols, 1996). Mexican Americans generally
report negative attitudes toward physician-assisted suicide, but a recent study found that
males preferred legalization over Caucasian Americans (Espino et al., 2010).
Conclusions and Recommendations
In concluding this chapter, a couple of points must be made. First, findings on culture
and end-of-life decisions are evolving. Since the first edition of the handbook, studies
have been conducted that challenge our understandings; we are finding a more complex
interplay of variables that appear to interact with sociohistorical context. Second, we
need to take more deliberate steps in our research to explore this evolving understanding.
In the past, the empirical knowledge base has largely focused on quantitative and/or
crosscultural comparisons. While this approach has informed scholars and practitioners
of some general threads, results indicate that decisions also depend on individual factors,
such as spirituality/religiosity, available information/education, acculturation, and
communication with health care providers. The comparison studies have done just what
they were intended to do. Now, a closer picture of individuals’ and families’ experiences
is needed to provide a richer context with which to understand how the values of culture
impact choices made at the end of life. End-of-life literature will benefit from increased
focus on the specific decisions people face as they are embedded in the nuances of
familial relationships, circumstances around the illness or death, and beliefs about death
and life. Indeed, recent trends suggest that this type of shift is in the making.
All of us desire to create meaning amidst our end-of-life experiences. The uncertainty
embedded in the event itself only adds to the uncertainty already felt in facing a wave
of health care decisions. Caregivers of African, Hispanic, and Caucasian Americans felt
burdened with end-of-life decisions when they were uncertain of their loved ones’
preferences (Braun, Beyth, Ford, & McCullough, (2008). As grief therapists, professional
counselors, psychologists, and medical care providers, steps can be taken to help ease
the burden for families of dying loved ones. We draw upon Laungani’s (1992) model of
understanding culture for the following suggestions: (a) determine the locus of decision
making in the family, whether patriarchal or matriarchal, individual, or family as a unit;
(b) observe closely the communication styles and patterns within the family, including
language used and whether unidirectional or bidirectional; (c) determine the family’s locus
of control, whether reality is perceived as deterministic or as a set of choices; (d) analyze
how reality is perceived and expressed, whether through cognitive or emotional means;
(e) understand how the family attributes causation of events, whether through scientific,
material explanations, or spiritual forces; and (f) adapt decision-making processes to
accommodate diverse perspectives toward end-of-life issues. Doka (2005) recommends
that practitioners consider all factors, complicating and facilitating, and realize that the
process of providing appropriate care may take time and may not end at the family
member’s death.
Ultimately, culturally competent research and culturally responsible and effective
practice will occur when a theme of sensitivity and respect is incorporated into interac-
tions with each person. Doing so involves a reflexive evaluation of our own culture,
socialization process, and values involved in our personal beliefs about end-of-life choic-
es, a critical review of how our own personal biases might affect our interactions with
those of other cultures and value systems, and finally, compartmentalization of our belief
systems to objectively and compassionately embrace and respect perceptions of truth
outside our own.
63
Chapter 8
End-of-Life Care: Spirituality and Religion

The Reverend Richard B. Gilbert
Introduction
Joyce Hutchinson and Joyce Rupp (1999) have a rich history of capturing the essence
of the human experience and the spiritual implications within these experiences. They
suggest that the two most vital moments, defining moments, in the human experience
are birth and death. How a person approaches dying becomes the bulwark on which rests
all that affords meaning and integrity for a person.
Rupp contends, with reference to the practices of her coauthor, that caring for the
dying is a privilege and is, indeed, a sacred time for the dying, their loved ones, and also
for those who are beckoned to approach the bedside of the dying. She says, “Joyce
[Hutchison] visualizes herself as accompanying each dying person to the door that opens
to the other side. She walks them home with loving care, quiet joy, tenderness and
compassion” (p. 19).
End-of-life care requires us to at least be available to the dying and their loved
ones around the issues of meaning, beliefs, rituals, and their longing for peace as they
face whatever may be ahead for them. This accessibility means our willingness, with
competence, to be available to others around spiritual concerns, wounds, religious issues,
unresolved issues, guilt, sin, fears about tomorrow, a lack of certainty surrounding their
faith and a sense of estrangement from God (or that which is their empowerment),
or their religious connections. It requires us to stand firmly in their presence as guest,
nonjudgmentally, while also tracking our own spiritual/religious issues, challenges, and
shortcomings.
To assist our discussion we will follow this outline:
• Spirituality and religion: definitions
• Spiritual care: the invitation placed before all providers
• Spiritual assessment tools
• The place for ritual in the care of the dying (including diversity)
• “Managing” diversity within the family (especially points of dispute)

• When our spiritual/religious self feels inadequate or threatened as providers/caregivers
• Making better use of chaplains
Spirituality and Religion: Definitions
Three points are essential here. The first is that everyone has something that he or she
expresses and experiences as spiritual. This expression and experience takes on a new
priority and intensity when a person is approaching the end of life. In the tension between
“lasts” and “firsts” there may be an internal challenge or conflict previously unknown to
the dying person and surrounding loved ones. Second, as caregivers (in whatever role)
we must be particularly present and nonjudgmental while monitoring and keeping watch
over our own spiritual and religious beliefs and practices.
The third point is particularly important. While the murmurings of the dying and
of the loved ones may seem almost profane in distancing from things spiritual, these
longings and struggles for wholeness at the time of death’s approach, paradoxically, serve
as the ultimate fulfillment and the ultimate destruction. This longing isn’t necessarily
about heaven and hell, though it may be for some, but the reality that this is the final test
of anyone’s beliefs and practices. Even those who have experienced a profound spiritual
sense throughout their life journey may feel their faith parched by the draining demands
of unfamiliarity on the spiritual walk when dying. Said another way, this person has not
faced death before, and this spiritual walk becomes the final stretch or wilderness. Gentle,
nonjudgmental, reassuring listening will be the mark for the providers so that the patient
can be free to say, believe, or search in any direction yet feel safe enough to risk moving
onward to the tomorrow that awaits within the boundaries of his or her faith.
In their training manual for hospice physicians, the American Academy of Hospice
and Palliative Medicine (1997) speaks of the search for meaning:
The search for meaning is often characterized by a process that involves exploring
questions of value and worth, letting go of former roles and expectations, and
reframing events to support renewed hope and an enlarged sense of efficacy.
When traumatic losses threaten or occur, patients and families begin the difficult
process of adaptation by trying to make sense of what is happening to them.
They search for meaning … (p. 17).
Then will unfold the questions of who, what, when, and why? as we try to configure
some pathway that we can follow that will make sense out of all of this. Seldom, of
course, is it sensible. It is doable when we are enabled to make the right connections
which, after all, is a person’s expressed spirituality.
It is during this entanglement between life and death, doubt and belief, that some
thread of hope is woven. Terminal illness is not necessarily the absence of hope. People
can find a measure of hope, even confidence, as they again bringing together living/
dying and their beliefs and practices.
The experience of dying and death is a first-time experience for us, even if we had
End-of-Life Care: Spirituality and Religion 65
faced the deaths of many loved ones and friends. The spiritual framework, often felt to
be crushed under the strong winds of death, are the same reference points that, upon
moving through the worst of death’s storm, may be the first familiar ground we recognize.
A death is the interruption of a human relationship—whether through a sudden
death in an emergency room; a lingering on through disease, perhaps in a nursing home
or hospice; or the stealing away of the breath of life in pregnancy. Painful interruptions,
wrong by human standards, are a part of life, the created order. We grieve, we hurt, we
lash out at the God we want to blame for all of this (Gilbert, 1995, p. 115).
In addressing the gay, lesbian, bisexual, and transgendered community, a lifestyle
so frequently immersed in isolation and abandonment, a strong religious criticism from
many, it becomes clear why many in this community could suffer severe spiritual and/
or religious doubts and wounds. Sweasey (1997), in citing spirituality as one coming
to know the self, speaks of spirituality in this way, “Having a deeper sense of oneself,
addressing the whole of life, and a connection with something bigger” (p. 12).
Religion often serves as the practical or structured (framing) around which we find
a measure of community, familiarity, and dependability. (Corr, Nabe, & Corr, 2006)
“[Religion is] experience, tradition, and shared attitudes had prepared individuals and the
community as a whole to support each other and to contend with the cycles of life and
death in their midst” (p. 45).
In his study on spirituality and aging, David Moberg (2001) reminds us that this
separation between spirituality and religion has not been an easy separation, should not
be seen as a divorce, and is relatively recent in its happening. He suggests that spirituality
emerged as an in term, in part, because of a growing suspicion of, and separation from,
religion. Spirituality became positive and religion was experienced as negative. Spirituality
and religion share the common purpose of enhancing a person’s self-worth, beliefs,
coping with life, and that which is eternal for them.
Spiritual Care: The Invitation Placed Before all Providers
Spiritual care is to remove our shoes, in a sense of humility and awe, as we tread upon
the sacred ground that is defined and trusted by the dying patient. This intimate sharing is
always scripted by the dying, and our ability to step into it is by invitation only. We bring
our beliefs and practices, and we have myriad spiritual assessment tools.
Sadly, some strong testimony suggests that spiritual care has been an area of some
turf warring. Some hospices have not been honestly committed to professional standards
for chaplains. Others have good chaplains who are blocked out by nurses and social
workers “who determine when the chaplains will visit,” as one chaplain shared with me
in a personal conversation.
Spiritual care is the work of all of us. If it rests with the patient primarily, and
secondarily with the family, it is their right to extend the welcome mat to whom they
wish. Obviously the team must build mutual trust and respect that replaces heroism with
collaboration. The patient, for many reasons, may feel more comfortable with the doctor
or the housekeeper, the nurse or the volunteer. Let it happen as it should happen, even
when referrals come too late (to hospice) that the patient often has no opportunity to
explore these important ingredients in their recipe for peace and wholeness.
Rachel Stanworth (2004), in remarks preceded by a strong case for chaplains and
pastoral care, states, “The point I wish to make is that unless transparency to an ultimate
horizon is valued in principle by employers, there is a danger that providers of palliative
care will come to regard spiritual issues as a purely subsidiary interest of psychotherapeutic
support, an impoverishment this book strongly resists”(p. 237).
Spiritual Assessment Tools
To assess is to value story, things said and unsaid, the collaborative viewpoints of the
team, patient and family concerns, blending them together into, at least for palliative
care, the medical model that then guides all team members in the care of the patient.
In part because of time constraints (staffing, late referrals, ability of patient to
communicate when heavily medicated, no available family or family disruption that
eliminates accurate reporting), along with our own comfort levels around spiritual and
religious matters, spiritual assessment is frequently compromised. It has become easier
to fit the person into the assessment tool, as one chaplain reminded me when visiting a
patient in the hospital where I served. “I have no time to visit with you. I must complete
the assessment form.”
This practice is common and, equally common, is the risk for spiritual neglect and
abuse. Once we have put processes first we have crossed a definitive boundary that,
unless reclaimed, will confound despair and pain and further distress the person whose
death approaches. It is about fitting who we are and what we offer into the story, the
personhood, of the patient. To reverse that intention is to cross that boundary.
Several assessment questions are here offered as resources to guide you as the patient
chooses to let you in. David Moberg (2001) suggests several approaches.
1. Questions for discussion and mapping the journey:
• Do you feel that you have become more religious as you have grown older?
• How would you describe your own spirituality and your own spiritual life?
• What is your perception of death? Your attitudes toward death?
• Are you afraid to die? Why or why not? (pp. 80-81)
2. Moberg shares these marking-points that allow patients to identify their spiritual
health and need.
• Assurance of God’s continuing love
• Certainty that life is protected
• Relief from heightened emotions as of fear, guilt, grief
• Relief from loneliness
• A perspective for life that embraces time and eternity
• Continue spiritual growth
• A satisfying status in life as a person
• The illusion of continued worth and usefulness (p. 93)

Gilbert (1996) offers these assessment questions that can work well when offered
conversationally.
• When you are discouraged or feeling despondent, what keeps you going?
• What are your sources of energy and courage?
• Where have you found strength in past experiences of loss or struggle?
• Where have you have found hope in the past? How do you define hope?
• Who have you looked up to? Who inspires you?
• What does dying mean to you?
• What does suffering mean to you?
• What does “religious community” mean to you?
• What does “religious leader” mean to you?
Another approach is to consider, by observation, assessment, and conversation, the
signs or “symptoms” of spiritual wounds or crises. Donna O’Toole (1995) provides these
statements as possible markers in the story.
• Feeling lost and empty
• Feeling forsaken, abandoned, criticized, or judged by God
• Questioning why to go on with life
• Extremes of pessimism or optimism
• Feeling or not feeling God (or other significant experiences) in life
• Needing to give or receive forgiveness
• Needing to give or receive punishment
• Feeling spiritually connected to what/who is lost
Gilbert (1995) offers these approaches around feelings expressed, demonstrated or
sensed as absent:
• “I feel that I am letting God down…”
• “It’s all my fault”
• “God will take care of me [often shield protecting further discussion or deeper
examination]”
• “Why did this happen to me? Why now?”
• “My heart aches. Where are the pills?”
• “There is no hope.”
• “Does God still love me?”
• “What if God knew this …?”
• “I don’t know how to pray any more.”
• “Can you teach me how to pray?”
• “I am going home.”
• “Will you pray with me?”
• “I want to see a priest.”
• “I thought God promised…”
• “The Lord is my shepherd.”

• “Prayed, and prayed, and prayed…”
The Place for Ritual in the Care of the Dying
Ritual is the marker, the stamp of approval that denotes where a person is on the journey,
what is happening or has happened, and the spiritual significance of the moment. It can
both comfort and clarify and serves as a conduit to a person’s faith, spiritual connections,
and religious sense. It is the anchor holding the person firmly in a most turbulent of seas.
It is important to bear in mind that, while rituals, especially sacramental ones, have
a more universal definition and outcome, are important, they are still the product or
choice of the patient and must not be imposed. This topic can be particularly tricky when
the family is divided around spiritual and/or religious matters, each producing his or her
own agenda. Questions like, What rituals are important to you?, What does a religious
leader mean to you?, and that which probes what keeps a person connected to God and
religious community, may be your pathways for inquiring about patient wishes.
Any discussion about ritual needs to consider not only the diversity of religious
expressions, even within a common group or denomination, but also the diversity
of culture. It is imperative that providers keep clear in both thoughts and actions the
differences between diversity and different. Several extensive bibliographies on diversity
and other related subjects are available free, by email, from this author.
African-Americans: As one minister noted, “We Blacks are very spiritual and we are
very loud about it.” African-Americans often speak about “passing” rather than dying.
They generally reject organ donations, especially older generations, because they believe
you must be whole to meet the Risen Christ. The religious leader often takes on a much
larger role as minister, advocate, legal consultant, and ethicist.
Hispanics or Latinos: Do note carefully that we are speaking not only of diversity
within families, communities, and nation, but from one country to the next. What works
with Mexicans, for example, may not be the approach of people from Argentina. “Death
is different in Mexico (Irish et al., 1993, p. 69).” Death can be feared, and emotions and
emotional needs run high. They are expressive, use art, religious objects, chants, and
prayers. The priest has a strong responsibility, both rooted in power and empowerment.
Some providers may note, for the first time, something of the magical use of religion. The
line can blur. The rule of thumb is to follow the lead of patient and family.
In addition to the reminder of differences by families and countries, it is also a
generational division. First generation Latinos, especially from Mexico, even those who
are legal, are so frightened of any authority (and thus place even more authority on the
role of the priest) that they will say yes to any statement by a professional, out of fear,
often never understanding their right to say no. Diversity, then, is not about translating
words, but of helping people understand content (words), options (choices), and rights.
Even those who break away from Roman Catholicism and follow other denominations
may still seek the rituals and sacraments that are more traditional. There can be variations
from generation to generation, especially when moving from first to second generation.
Providers must carefully facilitate both needs. Many Mexicans will need guidance around
American funeral practices and also often need assistance when burial in Mexico is
preferred.
Jews: There is variation, of course, by traditions: Hasidic, Orthodox, Conservative,
Reformed, Reconstructionist. There can be language and cultural additions to the
discussion. Some will pick and choose, preferring to see themselves as cultural Jews.
Many will require burial within 24 hours, and with specific preparations, including bathing
and dressing. This requirement becomes a potential point of difficulty when an autopsy
is requested or demanded, and, quite frankly, American society, especially around the
logistics for death certificates and other vital statistics, is not a 24-7 operation. A Friday
afternoon death might well, simply due to paperwork, be delayed until Monday.
Roman Catholics have much diversity, including cultural. Some national groups will
go back to old traditions, including Extreme Unction, refusing the strongest persuasion of
the changes since Vatican II. They might seek both anointing (now stressing reconciliation)
and last rites. The threefold burial rites of the wake (often with the recitation of the
rosary), the funeral mass and the burial are important. Some plans can be frustrated by
the shortage of priests or the refusal of some priests or dioceses to facilitate options.
Hinduism, including the sect, Jainism, represents the oldest major world religion. It
combines many religions and many beliefs. There also can be strong practices around
caste and gender. This cultural influence has strong implications for providers. Organ
donations generally are not opposed, and burial is within 24 hours, usually by cremation.
The switch to crematories, now an American mainstay, is a significant cultural shift.
Caskets are always open, and sacred books and food play a significant part.
Buddhism stresses that the person passes through many reincarnations. This passage
is imperiled when there are delays at the time of the death, including pronouncing the
death, paperwork, organ donation discussion and funeral arrangements. This aspect is
well-discussed by Donald Irish and his colleagues (1993).
Muslims and the Islamic faith, have become a contentious issue for many due to
world events, politics, and, at times, prejudice, and fear. There is also variation due to
country of origin, and frequently issues around gender and authority. Muslims view death
as a universal reckoning, when people are called upon to account for their actions. They
find their faith expressed in the Five Pillars. The casket is never open, there are readings
from The Qur’an, prayers are recited, and the deceased is buried (not cremated). Many
times the graveside ceremonies are attended only by men.
Native Americans (first-generation Americans) is a complex collection best described
as diverse. There are strong tribal customs and differences, generally a profound sense
of spirituality, and much that does not fit neatly into the American traditions. There are
also generational differences. Oftentimes in communities with large Native American
communities, one of the funeral homes is particularly expert in the needs of that
community.
In all of these groupings, and there are many more, the key reminder is always that,
while being informed about general practices and expectations, let the person tell you.
Managing Diversity Within the Family
While there is no one way to do a burial (albeit while respecting state and community
laws), there can be strong expressions around practices that are less acceptable for a
particular family or family member. This conflict is often mirrored in issues surrounding
religious diversity (Christian vs. non-Christian, religious vs. nonreligious, born again vs.
those following a different definition or set of criteria). Some opinions or objections may
be rooted in the nature of the relationship to the dying patient as well as in old wounds,
bitterness, or feuds. Sometimes there are secrets, others, as Ken Doka (1989) expresses
so well, are disenfranchised and have voice that is not heard. Remarriage and blended
families, especially when there are adult children who have not accepted the new mom or
dad, can be very conflictual. The patient’s advance directives, even the fact that the family
did not know there were any advance directives, may dictate things in ways unsuitable to
the family or parts of the family.
These predicaments often create what feels like a conflictual role for providers. It is
important that the team plans around these concerns and maintains a common approach.
It may be necessary for one member of the team to be directive. While we stress that
we follow the wishes of the patient, it is too easy to hide in that caveat and fail both
to address the needs of the family (within reason) and how those needs, practices, and
memories help or hinder the patient as death approaches.
When Our Spiritual/Religious Beliefs Feel Inadequate or
Threatened
Even under the best of circumstances, the constant parade of dying patients brings
significant challenges to providers. Various patients will hook you, snag you less in their
stuff and more in yours. Sometimes it is the accumulation of deaths. For others it is the
circumstances around the dying, the patient’s age or gender, and the patient’s family can
contribute to this entanglement. These stressors are neutral unless they impact on the
patient or compromise our ability as providers. For most of us it is missing the opportunity
for us to explore our own beliefs and practices.
Sometimes our frustration is an invitation to learn, such as questions or a sense of
inadequacy when responding to a person who represents different values, gender, beliefs,
or lifestyle.
Just as we need to listen to patients intentionally, as a guest, and nonjudgmentally,
so we require that for ourselves. Many of us have trouble acknowledging and actualizing
this fact. There must be a component of the team process that provides debriefing and
the opportunity not only to review the case, but to review ourselves. Management must
know how to discern team needs and when an intervention might be necessary for the
group (team) or for an individual. This discernment is also a good use of the chaplain’s
presence with team members.
Making Better Use of Chaplains

Chaplains have long served in the care of the dying. Even before the modern hospice
movement there were various expressions of hospitality and care of the dying, often
provided by monks and monastic communities.
Chaplains are specialists, usually with additional training and accountability, to work
in a variety of traditional and nontraditional workplaces, including hospice. They need to
be included as active members of the team, and it is important that they have full access
to patients, families, staff, and charts. Chaplains have the responsibility of both being
actively present while also standing at a distance, viewing the wider picture, including the
needs of the staff.
Conclusion
Few events in life both depend upon and stress a person’s spiritual resources than to
be approaching the end of their life. This ending is a time of profound, exaggerated
experiences, feelings and needs, all of it at an intensity frequently unknown previously.
For some, this new experience is more than their spirituality can bear. For others, things
spiritual are the only things that will move them through it.
Exploring the spiritual dimension is crucial for patients, families, and providers when
approaching end-of-life care.
73
Chapter 9
Historical and Contemporary Perspectives

on End-of-Life Decision Making
James L. Werth, Jr.
Introduction
This chapter is intended to briefly review several areas that have implications for end-
of-life decision making. To the degree possible, I have based the discussion on research
and will provide both historical and contemporary perspectives on each area, although
the length of time reviewed will vary by topic. I defined end-of-life decision making as
choices made by dying individuals, their loved ones, or professional caregivers that take
place during a person’s dying process and/or have an effect on the manner and timing
of death. Examples of end-of-life decisions include whether to create advance directives
(i.e., a living will, a durable power of attorney for health care) and, if so, determining the
specifics related to them; whether to continue on, withhold, or withdraw life-sustaining
treatment; whether to more actively hasten death such as by voluntarily stopping
eating and drinking or requesting (or providing, in the case of personal and professional
caregivers) assisted suicide or voluntary euthanasia (see also Kleespies, 2004). I will not
deal with end-of-life decisions made and enforced by health care providers without the
awareness of the dying person or loved ones (e.g., involuntary euthanasia) or over the
protestations of the dying person/loved ones (e.g., futility determinations).
Demographics of Death
According to the National Center for Health Statistics (Kochanek, Xu, Murphy, Minino, &
Kung, 2011), in 2009 nearly 2.5 million people died in the United States. Over 70% of
those who died were 65-plus while less than 2% were under the age of 20. Because the
majority of people who die are adults, as well as the fact that decision making for infants
and children is complicated by a variety of factors, the focus on this chapter is on end-of-
life decision making by and for adults.
In the United States, in 2009, the average person could expect to live to be over
age 78 (Kochanek et al., 2011); in 1900 life expectancy was only 47 years (Field, 2009).
There are longevity differences based on sex and race/ethnicity (Kochanek et al., 2011).
Women, on average, can expect to live to be 81, while the average life expectancy
for men is 76. Thus, women are more likely to be single/widowed near the end of life,
and the current cohort of women is more likely to be poor because they did not work
to the same extent as today’s women (Stillion, 2006). The average life expectancy for
Caucasian is 79, while it is 74.5 for African-Americans and 81 for Hispanics. Combining
these data, Hispanic women have the longest life expectancy, followed by Caucasian
women, Hispanic men, African-American women, Caucasian men, and then African-
American men; other groups are harder to track.
In many other countries, life expectancy has also increased, but in some nations
there has been little improvement. For example, Stillion (2006; see also World Health
Organization [WHO], 2012, Table 1) noted that Japan (83 years in 2009) and Sweden
(81 years in 2009) have also seen significant increases in longevity in the last century.
Just as in the United States there are gender differences in longevity in most countries
reporting mortality statistics, with women living longer (Stillion, 2006; WHO, 2012). On
the other hand, life expectancy of someone in many countries in Africa may be 55 or less
(WHO, 2012, Table 1).
Although not technically a death demographic, it is noteworthy that as people
continue to live longer, the likelihood of some sort of cognitive decline increases, even
without considering the people who develop dementia (Park, O’Connell, & Thomson,
2003). Thus, there is the possibility that eventually any person may lose the capacity
to make her or his own health care decisions, which has implications for the end-of-life
decision making process.
Causes and Patterns of Dying
Just as longevity has changed in the past century, so too have the causes of death,
the places where death occurs, and the ways that people die, all of which may impact
decisions.
Causes of Death
During the early 1900s, the leading causes of death were diseases and conditions that
led to death fairly certainly and rapidly (e.g., pneumonia); however, more recently, the
primary causes of death are chronic conditions that often have an uncertain path and
timeline (e.g., cancers, heart conditions; see Field, 2009; Leming & Dickinson, 2007;
Stillion, 2006).
The patterns of dying differ based on age group, sex, and race/ethnicity. For example,
in 2009, for people over 65, heart disease and cancer are clearly the two leading causes
of death, while for those aged 15-24, unintentional injuries, homicide, and suicide are the
top three (Kochanek et al., 2011). In 2008, Alzheimer’s disease, influenza and pneumonia,
and suicide were in the top 10 lists for Caucasians but not for African-Americans whereas
homicide, septicemia, and HIV disease were in the top 10 for African-Americans but not
Caucasians (Heron, 2012).
Historical and Contemporary Perspectives on End-of-Life Decision Making 75
Internationally, the causes and patterns of death look very different (WHO, 2012,
Table 2). For example, the mortality rate for communicable diseases is much lower in
the region of the Americas and the European region than the African region. Similarly,
the mortality rate associated with chronic respiratory conditions is much higher in the
Southeast Asia region and the African region than in the region of the Americas and the
European region. The patterns of death underscore Ditto’s (2006, footnote 1, p. 136)
point that end-of-life decision making in the United States, much of Europe, and other
industrialized and technologically advanced countries probably is very different from
other parts of the world.
Where Death Occurs
Just as the causes of death have shifted over the last 100 years, the same is true of the
places where death occurs, at least in the United States (Field, 2009; Stillion, 2006).
Although death used to take place in the home with the person surrounded by loved
ones, according to the National Vital Statistics System (n.d.; Table GMWK309), in 2005
over 75% of deaths occurred in institutions where people were likely to be surrounded
by health care workers. More specifically, about 45% of people died in hospitals and
about 22% died in a nursing home; almost 25% died at home. According to the National
Hospice and Palliative Care Organization (NHPCO, 2012), in 2010, nearly 42% of people
who died were receiving hospice care, which may take place in a variety of settings
including a personal home or an institution (hospice will be discussed more fully below).
How and When People Actually Die
Given the information above—that people who die are primarily older adults who have
chronic conditions and are in institutions—it should not be surprising that the dying
process and ways in which people die today reflect these changes. Instead of fading away
at home as the body shuts down (i.e., “naturally”), the majority of people who die in the
United States in modern times do so after a decision has been made to stop or not start
treatment (Faber-Langendoen & Lanken, 2000). Thus, although technically people may
die of an underlying condition, such as kidney failure, they actually typically die when
treatment (e.g., dialysis) is withheld or withdrawn, so the timing and manner of their
death is orchestrated or negotiated in some way by a combination of the dying person,
loved ones, the health care team, and sometimes the courts. As with the other areas
mentioned above, there are differences based on demographics; some of the possible
reasons for these differences will be discussed in the next two sections.
Obstacles to Health Care
The issue of health care disparities has received significant attention in the last decade
(e.g., Gamble & Stone, 2006; Satcher & Pamies, 2006). Given the history of exclusion
of non-Caucasians from hospitals as well as the unethical medical experimentation on
racial/ethnic minority individuals in the United States, it is not surprising that there are
sociocultural barriers to equal access and care that continue today (Shavers & Shavers,
2006). There are also differences in health-related quality of life based on demographic
factors (Lubetkin, Jia, Franks, & Gold, 2005), including treatment based on age (e.g.,
Schrag et al., 2001) and sex (Wizemann & Pardue, 2001). One of the major obstacles
to health care is mistrust of the medical system, based on historical issues such as the
Tuskegee syphilis study (Werth, Blevins, Toussaint, & Durham, 2002).
Pain management provides an example of how discrimination has continued into the
present, can create obstacles to appropriate care, and therefore can have implications
on decision making. A number of studies conducted in various settings and geographic
locations have demonstrated that there are significant differences in the provision of
pain medication across a variety of settings and for all types of pain (for a review see,
Green, Anderson, et al., 2003). For example, a study of patients who presented with
musculoskeletal pain demonstrated that race (black vs. Caucasian) and age (older vs.
younger) were two factors leading to fewer prescriptions of opioids and pain medication
in the emergency room and upon discharge (Heins et al., 2006); similarly, in another
study, blacks were less likely to receive opioids than Caucasians (Chen et al., 2005).
This lack of appropriate pain management has extended to chronic and terminal
illness situations. Research has demonstrated that in such situations members of ethnic
minority groups with cancer-related pain are less likely to receive the recommended
amount of pain medication (and may even receive no medication) than European
Americans (Werth et al., 2002). A related issue is that even if they receive prescriptions
for the proper amount of pain medication, members of ethnic minority groups may not
be able to get these prescriptions filled in pharmacies in their own neighborhoods because
of insufficient supplies (Green, Ndao-Brumblay, West, & Washington, 2005; Morrison,
Wallenstein, Natale, Senzel, & Huang, 2000). These problems with proper access and
treatment have been linked to some of the decision-making differences near the end of
life attributed to ethnicity.
Diversity Issues in End-of-Life Decision-Making
The literature on the apparent impact of cultural diversity on end-of-life decisions is fairly
large and growing.Thus I cannot cover all aspects of diversity and must rely on gross
generalizations in the areas I do discuss (Blevins & Papadatou, 2006). I highlight some
results related to age, ethnicity, and gender.
The impact of age on end-of-life decision making is difficult to identify because of
confounding variables such as cohort effects (Blevins & Papadatou, 2006) and religiosity.
This difficulty may explain the inconsistency in the literature regarding the beliefs of older
adults about end-of-life decisions such as withholding or withdrawing treatment and
having advance directives (i.e., living wills or durable powers of attorney; Werth et al.,
2002).
On the other hand, research on the attitudes and actions of various ethnic groups has
been fairly consistent (Werth et al., 2002). Given that they may be less likely to receive
proper and timely care in the first place, it should not be surprising that members of ethnic
minority groups appear to be less likely to make decisions that appear to limit care or
potentially hasten death, such as requesting treatment be withheld or withdrawn (either
in person, in a living will, or through a proxy). In addition, longevity may be perceived as
an intrinsic good, either for the person himself or herself or in order to extend the length
of relationships (Mutran, Danis, Bratton, Sudha, & Hanson, 1997; Werth et al., 2002).
European Americans are more likely to have positive attitudes toward advance directives,
assisted suicide, and euthanasia; to actually complete advance directives; and to request
and receive assistance in dying, whether legally in Oregon or in unregulated fashion
(Werth et al., 2002).
The literature on gender differences in end-of-life decision making seems to show
some possible differences in a few studies on particular types of decisions, but overall the
differences appear to cancel each other out (Werth et al., 2002). Yet, Kastenbaum (1995)
noted that illness, debility, and death may have a different meaning for men and women,
given cultural gender role expectations for women as caregivers of others and for men
to be providers for their families. In addition, some research has shown that women are
more concerned about having a “dignified death” than men (Bookwala et al., 2001).
Treatment Options
When diagnosed with a life-threatening condition, there are often many possible
treatments, depending on the situation (Leming & Dickinson, 2007; Stillion, 2006).
Some options may be physical or biological, such as medication, surgery, transplantation,
chemotherapy, radiation, and/or complementary therapies; other possibilities include
behavioral changes, psychosocial interventions, or spiritual activities. Different groups
(e.g., immigrants) may be more or less likely to select a given treatment option based
on cultural values, including religious beliefs (Juckett, 2005). For example, some cultures
ascribe to a belief that there must be a balance between hot and cold and that imbalances
cause disease, so if a person has a hot condition (e.g., a rash) and the physician prescribes
a hot treatment (e.g., vitamins), an Asian or Latino person may disregard the advice and
may have less confidence in the medical doctor (Juckett, 2005). Some cultures have their
own diagnoses and treatments as well (Juckett, 2005). Further, in some groups, depending
on the family relationships involved, the patient may not be the treatment decision maker
and in fact the family may not want the person told of her or his condition, especially if
death may be involved (Werth et al., 2002).
Although many of the treatments for conditions that may lead to death are medical,
the National Institutes of Health (NIH, 1997; NIH Technology Assessment Conference
Statement, 1995) has acknowledged that psychological interventions are efficacious for
some conditions and may be especially beneficial when used in concert with medical
treatments. Psychosocial interventions can be useful in dealing with the emotional
reactions to the various medical treatments and the side effects of such approaches.
Kleespies (2004) stated that “conventional care” is focused on acute care and cure,
especially in hospitals where advanced technology can be used, which works well for
many people but not for those who are dying. Thus, another treatment option is palliative
care, the goal of which is to alleviate or prevent symptoms and suffering that cause
distress without striving for cure (Kleespies, 2004). Palliative care is often considered to
be implemented when a person is dying, but actually can be offered in conjunction with
other treatments (Stillion, 2006); however, it is true that hospice (see next section) is one
particular type of palliative care that is reserved for people near the end of life.
Although some would not call them “treatment” options, withholding/withdrawing
treatment, assisted suicide, and euthanasia are options for some people. These possibilities
may get discussed in terms of quality vs. quantity of life, with different people having
different goals (Rodriguez & Young, 2006). As noted earlier, most people in the United
States die after a decision to withhold or withdraw treatment, but there is marked variation
across countries (Sprung et al., 2003). Similarly, laws permitting physician-assisted suicide
under certain circumstances exist in Oregon and Washington but no other state has
passed a law allowing it and euthanasia remains illegal in all states (Kleespies, 2004).
The Montana State Supreme Court has stated there are no legal precedents or Montana
statutes prohibiting physician-assisted suicide, but the Montana legislature has passed
no law regarding physician-assisted suicide (Knickerbocker, 2010). Only a few other
countries (e.g., The Netherlands, Belgium, Switzerland) have legalized assisted suicide
and/or voluntary active euthanasia while others (e.g., Australia, England) have explicitly
rejected efforts to allow either action (see Finlay, Wheatley, & Izdebski, 2005; Materstvedt
et al., 2003; and accompanying commentaries).
Holistic Approaches
One treatment option that offers a holistic approach is hospice. Widely considered to
offer the gold standard in care near the end of life (Casarett, 2006; Connor, Lycan, &
Schumacher, 2006), the modern hospice began in England in 1967 when Cicely Saunders
started St. Christopher’s (Stillion, 2006). The first modern hospice in the United States
was established in New Haven, CT, in the early 1970s (Connor et al., 2006) and placed
emphasis on home care as opposed to inpatient services. In 1982, the U.S. Congress
added coverage for hospice through Medicare (Stillion, 2006). Today there are over 5,000
hospices in the United States, which served almost 1.6 million people in 2010—over 77%
of whom were European American, over 35% had cancer, 56% were women, and nearly
83% were 65-plus years old (NHPCO, 2012).
Hospices utilize a multidisciplinary team of nurses, aides, social workers, chaplains,
and volunteers, under the direction of a physician, to provide biopsychosociospiritual care
of the dying person and her or his family, often in the person’s home (Connor et al., 2006;
Kleespies, 2004; Leming & Dickinson, 2007). Hospice personnel excel at treating and
alleviating pain and suffering. Once a person has been given a prognosis of six months
or less to live, she or he becomes eligible for hospice, although the median length of stay
in hospice is only 21 days, with about 35% of people dying within a week of admission
(NHPCO, 2012). One potential reason for this short stay is that in order to access hospice
care, the person must agree to forgo any more attempts at curative treatment; thus
some people (including physicians, patients, and caregivers) can interpret this decision
as giving up and therefore resist enrolling in hospice (Casarett, 2006). This phenomenon
demonstrates that the way hospice is explained to dying individuals and their loved ones
can have a significant effect on the decisions of whether and when to enroll in hospice.
Death Anxiety
The general concept of death anxiety has been the focus of significant empirical atten-
tion. However, exploration of the impact of death anxiety on end-of-life decision making
is, almost necessarily, a theoretical enterprise. There has been some research on gender
and age differences (Kastenbaum, 1995; Leming & Dickinson, 2007) but to truly exam-
ine how death anxiety influences decision making, one would need to conduct research
involving death anxiety measures with people who are dying or in conjunction with some
measures of end-of-life decision making, such as attitudes about or completion of ad-
vance directives. A search of the literature did not find any work specifically on this topic.
Landmark Legal Cases
Earlier, the topic of withholding and withdrawing treatment was mentioned. The fact that
people in the United States can choose to not start or to stop life-sustaining treatment
for themselves or loved ones is the result of a series of legal cases that involved state
and federal courts up to and including the U.S. Supreme Court. Three cases that deserve
special mention are In re Quinlan (1976), Cruzan v. Director, Missouri Department of
Health (1990), and Schiavo ex rel. Schindler v. Schiavo (2005a, 2005b), hereinafter
referred to as Quinlan, Cruzan, and Schiavo, respectively (Cerminara, 2009).
In Quinlan, a young woman was in a persistent vegetative state and her father
wanted to discontinue the use of a ventilator. The woman’s physicians along with the
hospital and county and state legal officials objected. The New Jersey Supreme Court
ruled that there was a constitutional right to privacy under the 14th Amendment along
with the New Jersey constitution. They took into account the technological developments
that allowed life to be prolonged. Importantly, the Quinlan case demonstrated that
surrogates could make decisions for people who were unable to express themselves.
Cruzan also involved a young woman in a persistent vegetative state, but she could
breathe on her own and was kept alive through the provision of artificial food and fluids,
which her parents wanted to stop in order to allow her to die. The issue here was the
degree of evidence required to allow the withdrawal of life-sustaining treatment when
someone had not named anyone as a proxy in the event of being unable to speak for
herself or himself. The U.S. Supreme Court ruled that there is a right to refuse life-
sustaining treatment and that a state could set a high standard to demonstrate that a
person would want treatment withheld or withdrawn but was not required to do so.
More recently, a protracted battle ensued between the judicial branch and the
executive and legislative branches in the case of Theresa Marie Schiavo, who also
happened to be in a persistent vegetative state and was receiving artificial nutrition and
hydration. Her husband believed she would have wanted the treatment stopped and
asked a judge to decide (for more discussion of this case see the entire issue of Death
Studies, Volume 30, Issue 2: “The implications of the Theresa Schiavo case for end-of-
life care and decisions”). The courts ruled that the treatment should be stopped, but
the Florida legislature and governor, U.S. Congress, and President George W. Bush tried
to intervene. However, the courts’ rulings held, and Schiavo died after the tubes were
removed.
Conclusion
There have been many developments in the last century that have affected end-of-life
decision making. I have mentioned a few, including technological advances and other
changes in when, where, and how people die; obstacles to health care and related
cultural diversity issues; traditional and holistic treatment options; and court cases that
have helped define options for end-of-life decisions.
81
Chapter 10
Life Span Issues and End-of-Life

Decision Making
Andrea C. Walker
Consider the experience of a teenager with acute lymphoma that is unresponsive to any
treatment, with a prognosis of death in the next 2 weeks, being approached by her staff
nurse about where she would like to spend the rest of her days. On the other hand,
imagine a healthy widower of 94 years with several children and numerous grandchildren
and great-grandchildren, approached by his physician about end-of-life choices should
an accident or unexpected illness occur, robbing him of his capacity to make decisions at
that time. Finally, ponder the 40-year-old female diagnosed with Level 3 breast cancer,
recommended treatment of biweekly chemotherapy, whose prognosis is unknown. The
experiences of these individuals vary dramatically, as likely will their responses to end-
of-life choices. A large part of the difference in responses relates to each individual’s
developmental place in the span of life.
Life span development is multidimensional, with cognitive, social, emotional, spiritual,
physical, and behavioral elements; multidirectional, with increasing and decreasing
capacities; based on context; subject to environmental and cultural changes; and ranging
across the entire life, from infancy to the oldest old in scope. Erikson (1997) provided
a noteworthy contribution to the life span perspective by explaining development in
terms of psychosocial stages into late adulthood, with each new stage presenting an
opportunity to reach higher development if “tasks” are resolved properly. The stage in
which an individual is in his or her life largely influences how challenges are perceived and
approached. The purpose of this chapter is to look at how life span issues affect the end-
of-life decisions we make. We will begin with a literature review of end-of-life decisions
at different life stages, move to a discussion about vulnerable populations, and conclude
with implications for caregivers.
End-of-Life Decisions Across the Life Span
Because end-of-life choices are usually made by those anticipating death, research typi-
cally involves older adults and terminally ill patients. Death occurs at all ages, however,
and certain tasks may characterize the experiences at different developmental stages.
Corr’s (1991) task-based approach to coping with dying provides us with a conceptu-
al framework for considering end-of-life issues that arise throughout the life span. The
model identifies (a) physical, (b) psychological, (c) social, and (d) spiritual dimensions of
coping, and Corr proposed that each of the tasks inherent in the four dimensions are
undertaken within the larger context of development and must be resolved for effective
coping to occur. Thus, physical, psychological, social, and spiritual tasks may be embed-
ded within the dying person’s experience in varying degrees and with diverse implications
across the life span.
Infancy and Young Childhood
The death of an infant or child is considered by most of society to be a nonnormative
event and looked upon as a tragedy. Health care thus tends to take on the role of
fixing the problem, doing whatever possible to prevent the tragedy from occurring.
Mothers reported wanting everything done for their extremely premature infants (Moro,
Kavanaugh, Savage, Reyes, Kimura, & Bhat, 2011). In such cases, it is necessary to weigh
the consequences of decisions to reach the best possible outcome for the child and
parents, who often need assurance that all treatments outside of futility have been tried.
With terminally ill children in palliative care, however, the younger the child the more
likely treatment will be withdrawn (Tan, Totapally, Torbati, & Wolfsdorf, 2006). Infants
who are deemed to have no chance of survival or extremely poor quality of future life
in Belgium and Netherlands may be deliberately given medication with the intention of
ending life (Wyatt, 2007). As surviving infants and young children seek to develop trust,
autonomy, initiative, and industry (Erikson, 1997), dealing with a traumatic illness, the
treatment of which sometimes confines the child’s activities and interactions, may leave
them with unresolved tasks later in life. Should a life-threatening illness or death occur
at this stage, much of the decision-making responsibility falls to the parent or guardian.
For children, both healthy and those facing death, more mature death understanding
relates to lower death fear (Slaughter & Griffiths, 2007). Discussions about treatment
and death, conducted according to the child’s developmental level, thus provide more
reassurance to the child than silence, and whenever possible the child’s wishes about his
or her treatment should be fulfilled (McConnell, Frager, & Levetown, 2004). Some argue
that children should be given more autonomy to make decisions regarding donation
of their own organs (Brierley & Larcher, 2011). In a child facing death, physical and
psychological comforts are highly important (Sourkes, 1996), and a feeling of influence
on a child’s surroundings may provide that comfort to some degree.
As the perceived role of many parents is to protect their children, end-of-life
decisions can be exceptionally stressful for them. Berg et al. (2007) describes two
mothers’ experiences with critically ill young children, one a highly educated mother who
lost a premature daughter after intensive struggle for life, the other a working mother
who lost a toddler daughter to brain tumor. Both shared their experiences and needs
Life Span Issues and End-of-Life Decision Making 83
for more engaged, sensitive health care staff. Parents ultimately face serious decisions
regarding do not resuscitate orders, artificial feeding, and terminal sedation to relieve
symptoms, so information about the prognosis, treatment options, and the child’s
reaction to treatments must be communicated clearly. Prognosis and treatment, as well
as demographic characteristics, have been found to influence end-of-life decisions for
young children, highlighting the need for open communication (Tan et al., 2006) and
continued discussion between health care, parents, and, as much as possible, to the child.
Adolescence
Adolescence is characterized by pubertal and physical changes, increased emphasis
on relationships with peers, increased need for autonomy and self-definition, and the
beginning of separation from family (Erikson, 1997). The prefrontal cortex, part of the
brain responsible for complex decision making, is still developing and will not be fully
mature until the mid-20s. Facing a terminal illness at such a critical life stage, during
which the search for independence and identity heightens, the desire for autonomy
grows, but the full capacity for complex decision making has not been reached, can
be especially challenging. Adolescents may have cognitive ability to think abstractly
but regress to earlier concrete thinking and behavior when faced with crisis (Stevens &
Dunsmore, 1996). This regression can result in family role alteration during illness, as was
the case with a female adolescent dying of cancer (Penson et al., 2002); decision making
began with the adolescent and, as her health regressed, transferred to the parent. Still,
the health care system recognizes adolescents as having the capacity to participate in
treatment choices (Children’s Rights Task Force of the Midwest Bioethics Center, 1995)
and generally encourages adolescents to participate. Indeed, adolescent cancer survivors
reported valuing autonomous decision making, without excluding their parents from the
process (Pousset et al., 2009).
Studies have confirmed adolescents’ willingness and ability to participate in end-of-
life decisions and have compared their choices with those of individuals much later in
the life span. Both ill and healthy adolescents have been found to want to participate in
decision making (Lyon & Lyon, 2009; Lyon, McCabe, Patel, & D’Angelo, 2004; Pousset
et al., 2009). Participants in McAliley, Hudson-Barr, Gunning, and Rowbottom’s (2000)
study of mostly healthy adolescents were found to be competent enough to understand
advance directives, comfortable discussing them, and believe in their importance, though
they chose medical and surgical interventions over choices to end life at a higher rate
than have adults in past studies. When compared with healthy adolescents, however,
adolescent cancer survivors were found to be more accepting toward end-of-life decisions
that had a life-shortening effect (Pousset et al., 2009). Collectively, these data suggest
that the more experience persons have with death-related issues, the more accepting
they are of life-shortening choices. Health care should thus center around the family
(Lyon et al., 2009), incorporating the specific health situation, as well as the needs and
experiences of the entire family, particularly those of the adolescent patient.
Young and Middle Adulthood

Young and middle adulthood is characterized by establishment of intimate relationships,
family growth, and development of generativity (Erikson, 1997). Decisions of whether or
not to terminate life-sustaining treatments in young and middle adults may be influenced
by hope of recovery through treatment or medical discovery. Young adult college
students, as well as some older adults, see withdrawal from treatment in similar terms
as suicide and see those patients as less competent (Wellman & Sugarman, 1999). On
the other hand, the greater the condition interferes with valued life activities, the more
likely it is to lead to a choice to end life (Ditto, Druley, Moore, & Danks, 1996). Having
a negative attitude toward death predicted higher likelihood to prolong life in college
students. When the prognosis of death is certain, whether a person has dependents
and arranged provisional care of those dependents can influence decisions. Moreover,
religiosity and spirituality, particularly in middle-aged cardiac arrest patients (Ai, Park, &
Shearer, 2009), as well as type of life-sustaining treatment (Mills & Wilmoth, 2002) are
important factors in end-of-life decisions. In this complicated stage of life, as the chance
of their own terminal illness increases, young and middle-aged adults are also more often
faced with the possibility of end-of-life decisions of a terminally ill child or of their elderly
or terminally ill parents. End-of-life decision making can touch individuals in this age
range with more complexity than in others.
Older Adulthood
The majority of research on advance care planning focuses on elderly adults, who are
often nearing retirement and needing to reassess priorities, values and hobbies, to
ensure a sense of integrity over their lives (Erikson, 1997). A strong need at this stage
involves maintaining social relationships (Ditto et al., 1996). In his book The Virtues of
Aging, Jimmy Carter (1998) shared his experiences leaving the White House and makes
recommendations for life after retirement. Carter discusses a need for information and
end-of-life planning, emphasizing the importance of retaining one’s lifelong character
and personal dignity during dying. Lester (1996) also suggested that end-of-life choices
relate to five concepts of an appropriate death, including (a) having a role in one’s death,
(b) maintaining integrity of the body, (c) consistency with lifestyle, (d) appropriate timing,
and (e) different types of death (social, cognitive, biological, etc.) occurring simultaneously.
These needs seem to be common for most older adults.
Who Makes Decisions?
In a large sample of 4,500 older adults, who were healthy, Caucasian, Midwestern high
school graduates, 80% preferred independent decision making, and this preference was
associated with being less avoidant of thoughts of death and valuing quality over length
of life (Moorman, 2011). Surprisingly, health status may not be related to whether or not a
person makes preparations, but discussions initiated by physicians are influential (Kahana,
Dan, Kahana, & Kercher, 2004). In a study of 700 elderly New Yorkers, predictors of
completing advance care planning were (a) having established primary care physicians,
(b) personal experience with mechanical ventilation, (c) knowledge about the process of
advance care planning, and (d) physicians’ willingness to initiate discussions (Morrison
& Meier, 2004). Moreover, those who complete advance directives are more likely to
receive care at the end of their lives that is consistent with their preferences (Silveira, Kim,
& Langa, 2010).
What Choices Are Made?
Researchers are somewhat divided in what predicts end-of-life decision making and/
or advance planning, with social, religious, demographic, and psychological factors being
considered. Older adults have been found to not necessarily want aggressive treatment
interventions at the end of life but prefer those that will minimize their discomfort (Nahm
& Resnick, 2001) and improve life quality (Moorman, 2011), consistent with Ditto et
al.’s (1996) finding that belief in one’s ability to perform valued life activities predicts
older adults’ choices to prolong life. Elders with greater religiosity are more likely to
extend their lives regardless of their condition, and those with lower religiosity and higher
value of quality of life are more likely to hasten death (Cicirelli, MacLean, & Cox, 2000).
Older adults consider perceived mental capacity, family burden, and pain to be the
most important factors in end-of-life decisions (Mills & Wilmoth, 2002). Cicirelli (1997)
suggested that choices may also result from psychosocial and demographic factors. In his
study, those who preferred maintaining life regardless of conditions tended to be African-
American, of lower socio-economic status (less education and lower occupational status),
and with greater subjective religiosity; they placed less value on the quality of life, had
less fear of the dying process, and more fear of destruction of the body. Inversely, those
who favored ending their lives tended to be Caucasian, of higher socio-economic status,
and with lower subjective religiosity; they placed higher value on the quality of life and
had more fear of the dying process. A surprising result of the study was that the majority
of participants chose to continue living even with lower quality of life, which may indicate
a survival instinct and/or socialized inhibitions against self-destruction.
Marital status, age, lack of psychological well-being, and gender have been found
to have no influence on end-of-life decisions (Cicirelli, 1997). This conclusion was
later challenged by Bookwala et al. (2001) who found that men prefer life-sustaining
treatments more than women, and Kahana et al. (2004), who found that unmarried
and younger individuals were more likely to have made end-of-life plans. Due to the
heterogeneity of views, end-of-life decisions of older adults may not be predictable, and
providers need to ask specific questions to consider each person’s preferences individually
(Vig, Davenport, & Pearlman, 2002).
The Role of Dementia
Older adults are living longer, the population of older adults is growing, and the need for
competence of psychologists in areas of dementia and family caregiving is thus increasing
(Karel, Gatz, & Smyer, 2012). The existence or potential for dementia in an older adult
with a progressive disease such as Alzheimer’s underscores the importance of advance
planning. Research has indicated that upon admittance to nursing homes, most patients
are beyond the cognitive capacity to complete health care proxies, and many families are
too emotionally distraught (Lacey, 2006). Families thus face difficult decisions in ensuring
quality of life while determining what the relative with dementia wants based on past
conversations, highlighting the need for ongoing communication among the patient,
family, and health care providers (Hennings, Froggatt, & Keady, 2010). Further, though
health care staff and family members of the patient are usually motivated by what is best
for the patient, their opinions on end-of-life choices can diverge due to differences in
religion and perspective (Rurup et al., 2006). The number of studies measuring dementia
and end-of-life decisions has multiplied in recent years; the following overview merely
scratches the surface, and further exploration of literature is encouraged.
Irwin (2006) expressed skepticism regarding life-prolonging treatments, particularly
tube feeding, based on the bioethical principles. Empirical evidence generally supports
Irwin’s perspective, indicating that predictors of satisfaction of end-of-life care for
nursing home residents with advanced dementia include elimination of tube feeding,
as well as specialized treatment for dementia, focus on patient comfort, and improved
communication (Engel, Keily, & Mitchell, 2006). After watching a video on care for those
with dementia, the majority of older adults preferred comfort care over life-prolonging
care (Volandes et al., 2011). Family caregivers reported most often that the wish of
their relative, before becoming debilitated with dementia, was to not be kept alive by
“extraordinary measures” (Black et al., 2009). On the other hand, some suggest that the
use of tube feeding does promote comfort and reduce distress at the end of life, arguing
that literature does not provide undisputed data for or against the use of tube feeding
(McCarron & McCallion, 2007). Much of the uncertainty, however, associated with end-
of-life decisions of an older adult with dementia can be alleviated with completion of
advance directives.
Vulnerable Populations
Persons with Disabilities
End-of-life care for individuals with disabilities can take on a particularly complex
situation. Disabilities may involve (a) individuals who were born with or developed a
disability very early in life, (b) individuals who acquired a disability suddenly due to illness
or trauma, and (c) individuals who have suffered from a progressive, chronic disease
(Robinson, Phipps, Purtilo, Tsoumas, & Hamel-Nardozzi, 2006). Forbat and Service (2005)
applied several case studies of end-of-life decision making to a hierarchy model utilized
within the Coordinated Management of Meaning (CMM) approach (Cronen, Pearce, &
Changsheng), emphasizing the contextual interaction of history, religion, culture, legal
implications, financial status, and proposed patient’s perspective to decisions such as tube
feeding, do not resuscitate orders, and type or duration of home care.
The highly publicized case of Terri Schiavo (involving a long battle between family,
delaying decision about her life and ongoing treatment for 7 years) brought to light the
importance of developing policies to help families make good end-of-life decisions for
their loved ones who cannot speak for themselves (Ditto, 2009) in the face of highly
complex medical situations. Some argue that Terri faced “disability discrimination” as the
assumption was made that she wanted to die (Johnson, 2006). Individuals with disabilities
are especially vulnerable in end-of-life care, and health care providers must practice self-
reflexivity when giving medical advice; their status as highly functional clinicians may bias
their perspectives regarding quality of life (Robinson et al., 2006).
Most agree that a sensitive, person-centered approach should be used to help
developmentally disabled individuals communicate their end-of-life wishes. Whether
these persons should be able to choose assisted death, however, has been a highly
controversial topic. Mayo and Gunderson (2002) present a impassioned refute of the
suggestion to eliminate the option of physician-assisted suicide for disabled persons,
arguing that trying to prevent this option actually represents a return to medical vitalism
and a shift away from the value of patient self-determination that currently dominates
the medical system. Indeed, rates of physician-assisted dying have shown no evidence of
heightened risk for disabled individuals (Battin, van der Heide, Ganzini, van der Wal, &
Onwuteaka-Philipsen, 2007). Others discuss a difference between “formerly competent”
and “never competent individuals;” they argue that those who have never had full
autonomy are not able to suddenly be autonomous, and the surrogate should make the
most compassionate decision to preserve the life and dignity of the disabled individual
(Cantor, 2005). Research continues to emphasize participation of disabled patients in
decisions, however. For instance, adults with Down syndrome have been found to need
increased involvement in end-of-life treatment (Watchman, 2005). One parent of a
Prader-Willi1 child indicated that though her child’s disease is complex and will require
assistance in end-of-life care decisions, she believes the best thing for her child is to
remain as autonomous as possible (Hannefield, 2006, personal communications).
Persons With Serious Mental Illness
Persons with serious mental illness have been found to be able to designate treatment
preferences, with most participants choosing aggressive treatments against pain and
most disagreeing with physician-assisted suicide (Foti, Bartels, Van Citters, Merriman, &
Fletcher, 2005). Empirical evidence provides no support for the notion that those with
psychiatric illnesses are at higher risk in terms of physician-assisted dying (Battin et al.,
2007). As physician-assisted suicide in the United States is currently legal only in Oregon
and Washington, the debate is still significant for persons with mental illnesses, so the
question regarding individuals with these issues is far from resolved.
1 Prader-Willi is “a complex genetic disorder that includes short stature, mental retardation or learning
disabilities, incomplete sexual development, characteristic behavior problems, low muscle tone, and an
involuntary urge to eat constantly, which, coupled with a reduced need for calories, leads to obesity”
(retrieved January 29, 2007, from http://www.thearc.org/faqs/pwsynd.html).
Persons With HIV/AIDS

Although HIV/AIDS affects all age groups, its occurrence in young and middle adults is
more frequent. The prognosis can be ambiguous at best, complicating questions regarding
end-of-life treatment. Unfortunately, empirical evidence evaluating the proportion
of physician-assisted death in people with AIDS suggested that this population is the
only one to be at heightened risk (Battin, 2007). Suggestions in literature regarding the
importance of communication with health care about end-of-life planning are particularly
poignant with people with HIV/AIDS. Women with HIV and HIV patients with children
in the household were found to be the most likely to communicate with practitioners
about end-of-life issues, and African-Americans, Latinos, intravenous drug users, and
less educated individuals were least likely to have had these discussions with physicians
(Wenger et al., 2001). For adolescents with HIV, family-centered advanced care planning
resulted in less decisional conflict, better communication, and more congruence in
adolescent/surrogate preferences for end-of-life care (Lyon et al., 2009). The prognosis
of HIV-infected individuals has improved with medical advances, likely influencing the
choice for life-sustaining treatments in this population.
Conclusions and Implications for Practitioners
Literature repetitively acknowledges a need for improvement in physical and mental
health care practices regarding end-of-life issues. The results of several of the studies
referenced in this chapter have validated the importance of communication and the
interactive processes among the terminally ill person, the family, and the health care
practitioner in advance care planning. Vulnerable populations are at particular risk and
must be considered individually, while maximizing the person’s dignity and sense of
autonomy. Further, implications for care may vary slightly at each general stage across
the life span, depending largely on the person’s ability to make informed decisions.
For infants and young children, more mature understandings of death led to less fear
(Slaughter & Griffiths, 2007). Ongoing communication among child, parents, and health
care provider, therefore, is paramount (Tan et al., 2006) so that the needs of everyone in
the family system are considered. Awareness of culture and family processes is important,
and McConnell et al.’s (2004) cycle of pediatric palliative care decision making includes
(a) assessing communication styles, culture, and beliefs; (b) assessing knowledge and
perspectives; (c) assessing decision-making capacity; (d) choosing the people and place
for discussion; (e) opening discussions and framing decisions; (f) evaluating options
and making informed choices; (g) preventing conflict and ensuring continuity; and (h)
ongoing reassessment to ensure cultural and familial sensitivity. McConnell recommends
following each step in this cycle when working with seriously ill children.
Terminally ill adolescents should be allowed to express their individuality as much as
possible, particularly by ensuring their privacy, allowing them to create their own space,
and encouraging them to participate in their own end-of-life decisions to the degree
with which they are comfortable (McConnell et al., 2004). Adolescents and their families
benefit from working with a multidisciplinary health care team. Parents report that stress
associated with making end-of-life decisions for their children can be alleviated if they
know everything has been tried and there are no other options (Penson et al., 2002).
Adolescents have been found to be willing, capable, and interested in discussing end-of-
life issues (Lyon & Lyon, 2009; Lyon, McCabe, Patel, & D’Angelo, 2004; McAliley et al.,
2000; Pousset et al., 2009)).
Since adults tend to base their end-of-life decisions on quality of life with a given
treatment, discussions about advance directives in terms of desired outcomes and valued
behavioral functions might be a meaningful approach (Ditto et al., 1996). Caregivers
must be self-aware and focused on not allowing their own needs to interfere with the
medical system’s ethical values of autonomy, beneficience, nonmaleficience, and justice
for the patient. Six critical care nurses, who suffered from extreme physical, emotional,
and psychological stress from their jobs, were interviewed regarding their role in the end-
of-life decision making of their patients (Jezuit, 2000). These nurses routinely experienced
conflict between meeting the patients’ needs and their own moral beliefs. The nurses
upheld ethical principles, as well as trustworthiness and compassion, and consistency in
practice through embodiment of a deontological view of ethics, that is, a view stressing
moral obligations and duties. Jezuit discussed a Theory of Duty, in which caregivers
should act from the obligation of duty, which gives the action inherent moral worth.
Using contributions from Kantian philosophy, Jezuit indicated that patients should be
treated as “ends in and of themselves and not just as means to an end” (p. 49) and that
any decision regarding patient treatment has morality if it can be generalized to other
patients in similar situations.
91
Chapter 11

Blair Sumner Mynatt and Robyn L. Mowery
Introduction
Historically, families were primarily shaped by the experience of death of family members.
In the United States, as the advent of end-of-life care increased life expectancy, the
beneficent and often paternalistic voice of medicine began to progressively drown out
the voices of patients and families whose values suggested that there may be fates worse
than death (Field & Cassel, 1997). Over the course of the last few decades, recognition
of the interdependence and mutual influence between the patient and the family as a
whole progressively disappeared in institutionalized medicine (Nelson & Nelson, 1995).
This holistic perspective of the family’s role at the end of life has been replaced, to a
large extent, with an instrumental view of the family’s sole purpose as service to the
individual, rather than also bearing in mind the ways in which individuals within a family
collectively contribute to the entire family system. The institution of the family has lost
its decision-making voice within the institution of medicine (a term used interchangeably
with the health care system), and is now seen primarily as a substitute voice for a dying
individual when the patient is unable to speak for him or herself (Nelson & Nelson, 1995;
Winzelberg, Hanson, & Tulsky, 2005).
Relations between the institutions of the family and medicine have been significantly
shaped by the institution of law. In an attempt to have the values of family life heard,
families turned to the legal system for support. Principally through the process of litigation
of several landmark cases (e.g., Quinlan, Bouvia, Kevorkian, & Cruzan) as well as the
enactment by Congress in 1990 of the Patient Self-Determination Act (PSDA), there
emerged a legal consensus that amplified the voice of individual patients (Meisel, 2005;
Werth & Blevins, 2002). The courts declared that end-of-life care decisions should be
guided (either directly or through proxy methods) by the dying individual’s wishes, and
the PSDA required health facilities to inform patients of their right to refuse medical
treatment and formulate advance directives (Meisel, 2005). The legal system based its
conclusions on an individual’s right to privacy and self-determination (i.e., autonomy)

without formally recognizing the moral or practical significance of other voices in the
decision-making process (Nelson & Nelson, 1995; Winzelberg, Hanson, & Tulsky, 2005).
In this way, the legal system effectively reified the medical system’s modern tendency to
focus on the individual patient without fully recognizing the significance of interrelated
and interdependent family relationships.
This individualistic approach to end-of-life decision making, in which families are
predominantly reduced to being extensions of the patient’s voice at the end of life, has
very recently begun to be challenged. Leading biomedical ethics scholars at the Hastings
Center suggest that existing consensus thinking on end-of-life care is founded on several
profound misconceptions and oversimplifications. Murray and Jennings (2005) assert
that the current approach has been excessively rationalistic and individualistic. Hastings
Center scholars further claim that problems with end-of-life decision making have been
misdiagnosed as flawed practice at the individual patient and physician level when the
shortcomings of end-of-life care may be more structural and institutional in nature (Lynn,
2000, 2005; Murray & Jennings, 2005). From this perspective, the excluded voice of the
family system may have much more to do with differences between institutional cultures
(Turner, 2005) and the contextual features that shape their practices than any intentional
devaluing of family life. In short, the values and goals of one institution may make it deaf
to the values and goals of another (Nelson & Nelson, 1995).
Using the practice of institutional analysis, Palmer (2000) suggested looking across
institutions and asking which institutional processes are most likely to help (or hinder)
society’s optimal response to end-of-life care. The remainder of the chapter will employ
the language of systems theory to explore the interrelated voices of medicine and law
in the United States and the practical implications for how institutional factors may
unwittingly constrain both the voice of the family and the patient in end-of-life decision
making. As detailed reviews of the legal, religious, and spiritual aspects of end-of-life
decision-making occur in separate chapters, the emphasis here will be limited to the
broader notion of the institution of law and its relationship to the institution of medicine
(not to be confused with the National Institutes of Health’s Institute of Medicine), while
religion and spirituality, through certainly relevant, will not be highlighted.
Systemic Factors Influencing End-of-Life Decision Making
Systems theory posits that the whole is greater than the sum of its parts and, like a
mobile in constant motion, each part simultaneously influences and is influenced by other
parts (Bowen, 1985). Families are fundamentally more than simply a group of separate
individuals, the institution of medicine is more than a compilation of discrete health care
professionals or facilities, and the institution of law is more than a collection of attorneys
and judges, independent court cases, or acts of legislation. Systems of people (including
social institutions) develop idiosyncratic goals, beliefs, values, and ways of expressing
themselves. They are governed by implicit and explicit roles, rules and procedures, and
The Family, Larger Systems, and End-of-Life Decision Making 93
have boundaries which may be open or closed, rigid or flexible. Health care providers,
family members, and attorneys are all socialized into the larger culture of their respective
institutions as well as the particular version of their immediate contexts (e.g., hospital or
nursing home, nuclear or extended family, county or state legal system) (Turner, 2005).
While all three institutions have overlapping aims, each deploys different mechanisms
for achieving its mission, which may not function efficiently across institutional systems.
Institution of Medicine
Broadly considered, the primary end of medicine is the provision of health care, traditionally
conceived as the cure of acute illnesses and restoration of functioning (Preston & Kelly,
2006). Foundational to acute care is the idea that clear diagnosis leads to clear treatment
protocols (Machado, 2005). As the threat to life increases, so does the reliance on medical
specialists and advanced technology for diagnosis and treatment. Roles for health care
professionals are often highly specific and organized according to type of disease and the
degree and type of intervention needed (i.e.; primary, secondary, and tertiary care). All
types of care occur in a specialized setting with its own implicit and explicit rules (e.g.,
limited visiting hours in intensive care units) and norms (e.g., the expectation that life
must be preserved at all costs). Thus, decision making within an acute care context tends
to be focused on discrete issues and fragmented solutions. However, this decision making
strategy for dealing with acute illness has created problems of its own.
As Joanne Lynn (2006) observed, “[The] great success of modern medicine has been
to transform acute causes of death into chronic illnesses” (p. S14). This transformation
has occurred precisely because the mechanisms of modern medicine (e.g., advanced
technologies and pharmaceuticals) have been so successful in achieving their purposes
that living with and dying from chronic conditions have resulted in novel circumstances
for which new mechanisms for making complex decisions have yet, or are only beginning,
to appear. The role financial reimbursement mechanisms play in shaping end-of-life care
within institution medicine cannot be underestimated.
For example, nearly half of all Americans 65 years of age or older will enter a nursing
home before they die, and most of these residents will have incurable chronic illnesses
(Zerzan, Stearns, & Hanson, 2000). Like acute care hospitals, however, policies governing
nursing homes emphasize the goals of rehabilitation and the restoration of functioning
(Johnson, 2005). Reimbursement mechanisms such as Medicare, Medicaid, and private
insurance companies encourage the reliance on technological interventions to meet
rehabilitation goals, thereby limiting options during decision making for terminal care
(Morrison, 2005; Zerzan, Stearns, & Hanson, 2000). Furthermore, funding mechanisms do
not reimburse health care providers for the time it takes to invest in nurturing relationships
with patients even though research reinforces the importance of psychosocial support for
health outcomes and quality of life (Morrison, 2005).
In addition to advanced physical care requirements, chronic terminal illness increases
the need for caring relationships, which can facilitate and sustain the slow transformation
of one’s identity and interactions with others over the course of the illness and dying
process. From the perspective of institutional analysis (Palmer, 2000), the institution of
medicine as it is currently organized is not well-suited for developing these relationships.
The institution of the family, however, has the development of individual and family
identity and sustained intimate relationships as core to its mission.
Institution of the Family
The provision of health care in the context of the family is a secondary end, a derivative
product of a shared identity forged by a moral commitment to the well-being of one
another (Nelson & Nelson, 1995). This moral commitment is why death cannot be
conceived of and dealt with solely in individual terms, and why dying patients frequently
express more concerns about the suffering of their loved ones than their own physical
status (Kogan, Blanchette, & Masaki, 2000; Murray & Jennings, 2005).
[The] family as a whole dies along with one of its members—it will never be
the same again. Every aspect of the family’s life and functioning is undergoing
change, a change imposed against its will. Inevitably, these changes create
stress within the family. The way a family has functioned in the past profoundly
influences the way it deals with the dying of one of its members (Davies, Reimer,
Brown, & Martens, 1995, p. 89).
The role(s) the dying individual played in the family can affect the family decision-
making process. For instance, if the patient played the role of peacekeeper or scapegoat
within the family, his or her impending departure will likely destabilize relationships
between other family members because there is no one now available to help manage
or take the blame for conflict. Additionally, Davies et al. (1995) empirically delineated
eight dimensions of family functioning, each representing a continuum of functionality,
that affect the success or difficulty families face when confronted with the impending
death of a loved one: Integrating the past, dealing with feelings, solving problems,
utilizing resources, considering others, portraying family identity, fulfilling roles, and
tolerating differences. The more strengths families exhibit in each of these dimensions,
the smoother the decision making process will be, while the opposite is also generally
true. For example, families with rigid or closed boundaries are often suspicious of others,
tend to function in isolation, and have trouble collaborating with others during a time
of need (Kristjanson & Aoun, 2004). Closed or rigid family systems may have difficulty
adjusting to new information or ideas, thereby struggling during the decision making
process (Csikai & Chaitin, 2006; see also chapter 19 in this handbook).
The dimension of “considering others” (Davies, et al., 1995) is especially relevant
from the perspective of institutional analysis. Being part of a family means being morally
required to make decisions on the basis of not simply what is best for oneself, but based on
thinking about what is best for all concerned (Hardwig, 1990). Ivan Boszormenyi-Nagy,
a founding theorist in family therapy, argues that “relational ethics” is critical to healthy
family functioning, and that failure of each family member to give due consideration to
the interests of other members is seen as the heart of family dysfunction (Boszormenyi-
Nagy, 1987; Boszormenyi-Nagy, Gruebaum, & Ulricj, 1991). Boszormenyi-Nagy claims
that family functioning is enhanced when members of the family can trust the family
system as a whole, and that this trust will instigate the process of balancing consideration
of the well-being of oneself with considerations of the well-being of others (Boszormenyi-
Nagy, et al., 1991).
Indeed, clinical observation suggests that when healthy families are given permission
to voice their own interests in the decision-making process (i.e., when health professionals
give due consideration to the family as moral stakeholders), they have an easier time
giving due consideration to the patient’s needs and wishes; often yielding growth and
development for all (see also Foster & McLellan, 2002). This observation is consistent
with Panke and Ferrell (2005) who note that “opportunities for growth for both patient
and family are tremendous even while they are coping with countless difficulties and
sorrows as the patient’s disease progresses” (p. 985).
However, relying on this model of shared decision making based on relational ethics
within the family, stands in stark contrast to individually focused biomedical ethics and
a legal consensus about end-of-life decision making that is founded on the principle of
an individual’s right to privacy and autonomy (See chapters 6 and 12 in this handbook).
The conflict between these models over decision making occurs because the surrogate
or proxy model of end-of-life decision making was initially forged in response to cases of
extreme conflict between the institution of medicine and the institution of the family over
the best interests of individual patients (Burt, 2005).
Institution of Law
While the institutional goal of medicine is protecting health and the institutional goal of
the family is protecting development within a web of intimate relationships, the goal of
the institution of law can be understood, at least in part, as protecting citizens’ rights.
Litigation and adjudication of narrowly defined questions and the legislation of broad
socially sanctioned policies are the two primary mechanisms used by the institution of law
to protect the rights of citizens.
The goals of the recently enacted Patient Protection and Affordable Care Act
(PPACA) (2010) include reducing the number of uninsured Americans and overall costs
of health care, improving healthcare outcomes, and simplifying the delivery of health care
services. The original version of the PPACA included wording that would have reimbursed
physicians for holding advanced care planning discussions with patients (Giovanni, 2012);
however, due to misunderstandings regarding the nature of these advanced care planning
discussions, this language was removed from the bill. The PPACA largely avoids most
issues related to end-of-life care for terminally ill patients, thus neglecting this important
issue (Giovanni, 2012).
The courts protected individual rights of patients against paternalistic medicine via
landmark cases such as Quinlan, Bouvia, and Cruzan, which explicitly established the
legal rights of patients to refuse medical treatments either directly or indirectly by desig-
nated health care surrogates. But just as medicine’s solution to acute health crises created
additional problems, the court’s reliance on the language of individual right has created its
own set of problems, especially for the family (Hardwig, 1990; Machado, 2005).
The legal consensus about end-of-life decision making assumes the existence of
conflict whereby the rights of individuals to make their own decisions must be assiduously
protected from either an overzealous health care system or coercive family members
(Nelson & Nelson, 1995). Court cases such as Cruzan, Quinlan, and, most recently,
Schiavo, highlight the need for such protection in extreme circumstances, but the media
attention these cases received tended to obscure the fact that they represent exceptions
of family functioning rather than the rule.
Most families don’t use the health care delivery system as a means of mistreating
the helpless. Why, then, construct a policy that treats all families as if they did? It
might be thought that a default assumption of mistrust is safer, because it does
prevent actual abuse and hurts no one where families are loving [or a health
care system is appropriately benevolent] rather than abusive. But in point of
fact, it does hurt people in loving families: It courts a real danger of breaking
down the intricate network of relationships—already strained by serious illness-
within which the patient is situated. Routinely and systemically treating people
[within families and/or between families and health care providers] as if they
were adversaries of mistrust sets up emotional barriers among family members
at the precise moment when they need all the comfort intimacy can give them
(Nelson & Nelson, 1995, pp. 115-116).
If, therefore, Nelson and Nelson’s (1995) and Boszormenyi-Nagy’s (Boszormenyi-
Nagy, et al., 1991) views of family functioning and relational ethics are correct, a purely
individualized approach to ethical decision making at the end of life in the context of
family dynamics may itself be a morally questionable activity that increases the risk of
harm to the family system (Mowery, 2005). Furthermore, it would suggest that being
in intimate relationships with others changes the level of influence on ethical decision
making considered to be appropriate, particularly in contrast to nonintimate relationships
(Mowery, 2005).
Practical Implications
What have been the results of this individual emphasis during end-of-life decision
making? During the last 40 years while the legal consensus was being developed, home
hospice care grew from a grassroots movement originating as a patient and family-
friendly alternative to end-of-life care in institutional settings, to a federal and state
subsidized form of health care. Despite these efforts, only 30% of individuals receive
hospice services at the end of their life (Gazelle, 2007). The vast majority of American still
die in hospitals without having documented advance directives and with families having
limited voice in the process (Field & Cassel, 1997; Merrick, 2005).
Advanced Care Planning and Treatment Decisions

Ninety percent of patients in the Intensive Care Unit are admitted without advance
directives (Boyle et al., 2005), and because these conversations are often not held ahead
of time, the patients and family members may experience difficulty regarding end-of-
life decisions. Advance directives were designed to provide a means for people to retain
autonomous control over their future medical care by documenting their treatment
preferences in writing and designating someone who would make surrogate decisions
on their behalf in the event that they no longer had the capacity to communicate their
desires (Burt, 2005). Consistent with the types of carefully circumscribed questions posed
in the court cases from which advance directives arose, and a medical system designed to
apply curative treatments to clearly diagnosable acute conditions, these documents have
tended to focus on narrowly defined treatment options (e.g.; do not resuscitate orders).
Hickman, Hammes, Moss, & Toole (2006) summarized numerous limitations of
advance directives, while also reviewing recent alternatives. Newer approaches to advance
care planning have emphasized the articulation of values and goals of care such as quality
(i.e., freedom from pain and suffering) rather than quantity of life (e.g., Five Wishes) or
increasing portability across treatment settings (i.e., Physicians Orders for Life-Sustaining
Treatments, (POLST)). All of these approaches to advanced planning emphasize the need
to discuss one’s wishes with a designated health care surrogate as well as making these
wishes known to health care providers to make sure one’s autonomy is respected and
advance decisions are carried out.
Yet, these improvements still fail to recognize that an autonomy driven approach
to end-of-life decision making has not consistently served the interests of patients and
families (Winzelburg, Hanson, & Tulsku, 2005). Recent attitudinal research suggests that
most patients do not prefer a purely autonomy driven approach to end-of-life decision
making (Nolan, Sood, Kub, & Sulmasy, 2005). These researchers found that while patients
retain decision making capacity, most prefer to share decision making with physicians and/
or loved ones (i.e., give due consideration to the medical expertise of the physician and
the interdependent needs of the family), with additional weight given to the input (not
necessarily substituted judgment) of loved ones once the patient loses decisional capacity.
In addition, it is known that even some patients who would opt, should they lose
capacity, for having their surrogate perform a substituted judgment may be doing
so not to express autonomy but as a means of relieving their surrogates of the
burden of making a ‘best interests’ decision. These considerations suggest that a
process far more complex than a desire for autonomous preference satisfaction is
at work in end-of life decision making (Nolan, et al;, 2005, p. 349).
Assisted Death
Current consensus that it is the individual patient’s right to refuse medical treatment,
even if doing so hastens one’s death, has led to controversy about whether the morally
accepted view to permit “nature to take its own course” (i.e., passive euthanasia) can
and/or should be extended to permitting a terminally ill patient to ‘direct nature’s course’
(i.e., active euthanasia or physician-assisted suicide, (PAS)). The question is whether there
is a moral distinction between intentionally allowing a disease process to result in death or
intentionally causing death though the use of additional means (usually pharmaceuticals)
to stop a disease process. Health care providers, bioethicists, and families are divided in
response to this question. The federal courts have said this extension of the principle of
autonomy in end-of-life decision making is an issue that must be resolved through the
legislative process in each state (Emanuel, Fairclough, & Emanuel, 2000). To date, two
states (Oregon and Washington) have legalized a process whereby patients can seek
prescriptions from physicians for the express purpose of committing suicide (i.e., PAS)
(see also chapter 9 in this handbook).
Research with terminally ill patients and their patient-designated primary caregivers
has suggested that there is broad support for euthanasia and PAS in hypothetical
situations involving others in severe pain, but this support drops dramatically in scenarios
where the imagined patient seeks termination of life due to the perception of being a
burden on the family (Emanuel, et al., 2000). However, only a small minority of sampled
patients actively considered these options for themselves, with patient depression being
the main motivating factor for interest in euthanasia and PAS. Furthermore, such personal
interest in euthanasia or PAS appeared quite unstable with about half of those interested
changing their minds over time (Emanuel, et al., 2000).
This research supports the provisions in Oregon’s PAS law for multiple conversations
between the patient and his or her physician over time. While approximately 17% of
terminally ill patients (in Oregon) have talked to their families regarding PAS (Tolle, et al.,
2004), there is no mandated provision in the Oregon law to protect the family to ensure
that they are supportive of the idea of PAS over time, or that all other resources that could
be brought to bear to help the family and support the patient have been exhausted.
Despite caregiver’s support for euthanasia and PAS, less than 20% of those
who deemed euthanasia or PAS ethical would be wiling to personally help their
family member end their life. This may reflect anxiety about prosecution and
uncertainty about committing these actions reliably. But it also may reflect the
emotional burden of actually performing euthanasia or assisting with suicide.
As a family whose relative had repeatedly asked for suicide assistance states,
performing euthanasia or PAS may not be a fair burden to place on the family
(Emanuel, et al., 2000, p. 2465).
The indictment of poor end-of-life care in the United States has been well documented
(Field & Cassel, 1997), so one must consider the degree to which euthanasia or physician-
assisted suicide would still be considered if sufficient palliative care for the patients and
the family had been in place throughout the entire trajectory of the illness, not just as an
option during the terminal phase.
New Directions in Palliative Care

Traditional medicine seeks to eliminate the underling causes of illness within an individual
patient, while palliative care, utilizing a multidisciplinary approach, seeks to eliminate
or minimize the physical, psychosocial, and spiritual burden of life-limiting and terminal
illnesses while recognizing that the burden is experienced and carried by both the patient
and the family (National Consensus Project for Quality Palliative Care, 2004). Palliative
care has long been the model for home-based hospice care. Its integration with inpatient
care has rapidly expanded in the last decade (Morrison, Maroney-Galin, Kralovee, &
Meier, 2005). In the summer of 2006, both the American Medical Association and
the Accreditation Council for Graduate Medical Education approved of a new medical
subspecialty in hospice and palliative medicine (see www.aahpm.org), thereby moving
palliative care closer to its ideal of being integrated with curative treatment from the time
of diagnosis of a life-threatening condition (National Consensus Project, 2009). While
the family’s voice is more readily heard in the context of palliative care and represents
a significant advance over traditional medical care, the individualistic assumptions
embedded in current models of surrogate decision making at the end of life still prevail
in palliative care.
For instance, training physicians for palliative medicine emphasizes the importance
of taking time to communicate with families during decision-making meetings focused
on goals of care (Fineberg, 2005; Tulsky, 2005), but such communication commonly
occurs with a view of the family as a collection of individuals. Communication training
for physicians, therefore, has largely focused on dyadic communication skills between the
physician and separate family members, with special attention given to the formal health
care proxy. The clinical and research literature on palliative care has paid limited attention
to the accumulated body of empirical data assessing dimensions of family systems
functioning (e.g., cohesion, flexibility, and communication) (Olson, 2000). It has also taken
full advantage of the family therapy literature which includes techniques for intervening
in unhealthy family system dynamics (e.g., multidirected partiality) (Boszormenyi-Nagy,
et al., 1991) that are readily adaptable to facilitate family decision making during goals
of care family conferences. Thus, while palliative care ostensibly does a better job than
traditional medicine of including the voice of the family system in end-of-life decision
making, until research, clinical practice, institutional policies, procedures and laws take
full stock of the intricate web of interpersonal family dynamics in which end-of-life care
decision making is embedded, the vision of the patient and the family as the true focus
of palliative care will be stymied.
101
Chapter 12
Ethical and Legal Issues in End-of-Life

Decision Making
Madeline Jacobs
Since the 1970s, a series of court decisions fueled nationwide debate and discussion
around end-of-life care, resulting in a national consensus regarding patient autonomy.
These cases highlight the importance and difficulties in balancing the interests of
individuals with those of the general public and have shaped and defined the ethical
landscape around end-of-life decision making.
Futility and Substituted Decision Making
In 1976, the country was embroiled in a heart wrenching debate about Karen Ann
Quinlan, a 21-year-old woman in New Jersey who suffered irreparable brain damage
and ended up in a persistent vegetative state (PVS) after mixing alcohol with prescription
medications on an empty stomach. Because her physicians disagreed with her parents’
decision to have Karen disconnected from a respirator that was maintaining her body, the
case ended up in the court system. Eventually, the New Jersey Supreme Court’s ruling in
the Quinlan case established the right of family of a dying, incompetent patient to let that
individual die by disconnecting life support. After more than 10 years in a nursing home,
Karen Quinlan died of pneumonia.
The case of Nancy Cruzan, in Missouri, was very similar, except the life-sustaining
treatment was a feeding tube.
The rulings in the case of Nancy Cruzan (see sidebar) further solidified the rights of
competent patients to accept or reject any life-sustaining treatment including artificial
hydration and nutrition. In addition, the Supreme Court ruling in the Cruzan case
established that individual states had the right to regulate standards of evidence for
end-of-life decisions. Missouri requires clear and convincing evidence of a patient’s
wishes to be demonstrated before life-sustaining treatments can be removed, as do New
York and Florida. This standard of evidence usually requires written or explicit verbal
statements substantiating the patient’s wishes.
On January 11, 1983, Nancy Cruzan suffered irreversible brain damage from a car
accident that resulted in her falling into a persistent vegetative state. For years, at
an annual cost of $130,000 paid for by the state, she was sustained by a surgical
feeding tube. After 4 years, when it became clear that there would be no change
in her condition, her parents and husband asked doctors to remove the tube. This
request was refused by medical providers who did not agree with the family’s choice.
In court hearings Cruzan’s family presented a case around their claims that she would
not want to live in such a condition. The case went all the way to the U.S. Supreme
Court, which upheld Missouri State law requiring clear and convincing evidence of
what an incompetent person would want. The court also ruled that living wills were
constitutional, on the foundation that a patient has the right to withhold consent from
medical treatment, and no medical treatment can be performed on any competent
patient without his or her concession to it.
On December 14, 1990, 7 years after her accident, and only after the State
of Missouri withdrew from the case and the family’s attorney and state-appointed
guardian filed separate briefs, did a judge authorize the feeding tube to be removed
and Cruzan died.
The Terri Schiavo case illustrates a worst-case scenario about conflict escalating out
of control. In 1990, Schiavo, a 27-year-old woman, collapsed and lost consciousness. Re-
suscitation efforts failed to awaken her and although she suffered brain damage from lack
of oxygen, she was able to breathe on her own and consequently put on a feeding tube.
After many years of trying multiple types of therapy, her husband accepted the medical
judgment that Schiavo had suffered irreparable brain damage and would never improve
or regain consciousness. He asked to have her feeding tube removed. Schiavo had not
left any written wishes for her treatment in this kind of situation, but as her legal proxy in
the State of Florida, there was always a clear legal basis for allowing her husband to make
decisions on his wife’s behalf (substituted decision making). Unfortunately, her family
disagreed with his decision to end life-sustaining treatment. Indeed, they made it clear
that they would never come to that conclusion and even began accusing the husband
of having abused their daughter and causing the original injury, a claim unsupported by
any evidence. The involvement of the press and ultimately the political system (Gov. Jeb
Bush, Pres. George W. Bush, and Sen. Bill Frist), as well as the Supreme Court, turned this
private tragedy into a public circus.
All three of these cases deal with the issue of withdrawing treatment in situations
with an incapacitated patient who has left no written or legal documentation of her
treatment preferences for being kept alive in a coma and the conflict and disagreement
that can result.
Ethical and Legal Issues in End of Life Decision Making 103
Futility and Stakeholder Interests

The increase of conflict around the issues of futility has transformed the work of hospital
care teams. How do these conflicts arise? Why are there some stakeholders ready to think
that the patient is dying while others remain adamant that curative care must be provided
and will be helpful?
Joseph Fins, a bioethicist and palliative medicine specialist, writes, “Many futility
disputes are often a product of miscommunication between doctor, patient, and family.
Families who demand care believed by physicians to be futile are often operating upon
different assumptions than practitioners because the clinicians have done an inadequate
job of communicating basic information about diagnosis, prognosis, and remaining
therapeutic or palliative options.”
The issue of futility is especially difficult because the visual evidence that the body
is in the last stages of life is not always easily recognized by untrained laypersons. The
patient may look like he or she is improving or strong enough to benefit from further
curative treatments, when in reality systems are shutting down. Patients are also known
to rally a bit and perk up around those they love.
Quill suggests that overly optimistic prognostication may lead families to push for
life-sustaining technologies rather than palliative care or hospice care. In the case of
Schiavo, “experts” kept providing her parents with “proof” of therapies that might work
or testimony that kept their hope alive that their daughter was still somewhere inside
that damaged brain and body. Frist, who also happened to be a physician, disputed the
diagnosis of PVS using a short videotape of Schiavo as evidence. This inappropriate and
simply false information provided a tragic misconception about Schiavo’s likelihood of
recovery. Autopsies after Schiavo’s death proved that her brain was severely damaged
beyond repair and all sensory function had been destroyed by the oxygen deprivation.
Fins (2006) suggests that physicians need to do a better job focusing on the goals of
care and communicating with patients and families. “The highway of aggressive medical
treatment runs fast, is heavily traveled, but can lack landmarks and the signage necessary
to know when it is time to make for the exit ramp….These signs are there and it is your
responsibility to communicate them to patients and families.”
For example, many of the technologies currently used in the course of routine
hospital care, such as cardiopulmonary resuscitation (CPR), were created to save lives
on the battlefield. Instead of stabilizing young soldiers so they could recover and go on
to lead productive lives, these technologies are used routinely to bring old and ill bodies
back from the dead. Patients and families are typically not fully informed about the pain
and suffering caused by CPR techniques, the post-CPR process, and the mortality rate
of survivors. Indeed, most patients in the final stages of their lives do not ever leave the
hospital after being resuscitated.
Advance Care Planning

In 1990, Congress passed the Patient Self-Determination Act (PSDA) which requires
many Medicare and Medicaid providers (hospitals, nursing homes, hospice programs,
home health agencies) to give adult individuals, at the time of inpatient admission or
enrollment, certain information about their rights under state laws governing advance
directives. This information includes:
1. the right to participate in and direct their own health care decisions,
2. the right to accept or refuse medical or surgical treatment,
3. the right to prepare an advance directive, and
4. information on the provider’s policies that govern the utilization of these rights.
The act also prohibits institutions from discriminating against a patient who does not
have an advance directive. The PSDA further requires institutions to document patient
information and provide ongoing community education on advance directives.
Five years later, in 1995, the SUPPORT study found that only 47% of the physicians
surveyed knew when their patients preferred to avoid CPR. In addition, 46% of do not
resuscitate (DNR) orders were written within 2 days of death. Most disturbingly, the
SUPPORT study intervention, which included enhanced opportunities for communication
around goals of care, failed to improve end-of-life communication and planning.
The publication of these findings galvanized the medical community into finding more
effective ways of complying with the legal requirements set forth in the PSDA. Having
patients sign a proxy statement, an informed consent, and a DNR as part of a huge stack
of admissions papers might comply with the letter of the law; it didn’t provide any helpful
information or guidance for making difficult treatment and end-of-life decisions. The
SUPPORT study proved that the legislation wasn’t enough to change practice. Improved
training and treatment protocols around treating pain and incorporating communication
around goals of care were necessary.
There are multiple stakeholders involved in every health care decision. Families and
other parties are often involved in health care decisions. However, based on the PSDA,
the competent patient is legally considered the ultimate decision maker. Of course, some
competent patients want someone else to make decisions for them, but they must clearly
communicate that preference.
In all cases, the physicians must determine whether the patient has the capacity to
understand the information necessary to make a decision. When there is conflict about
a treatment decision, the role of the physician and/or the ethics committee is first and
foremost to defend and protect patient autonomy—the right of the patient to determine
how decisions are made and information is shared.
Ethical and Legal Issues and End-of-Life Decision Making 105
Definitions of Key Advance Care Planning Concepts
Advance directives: There are two types of advance directives.

Proxy/durable power of attorney for health care: A person who has the
legal authority to make medical decisions for an incapacitated patient. The
authority is assigned through a signed and witnessed proxy statement or
durable power of attorney for health care, depending on the state law.
Another word for a proxy is agent and representing a patient is called
agency.
Living will: A person’s written statement of treatment preferences in the
event of incapacity. There are many different forms of living wills.
Cardiopulmonary resuscitation (CPR): The medical procedures used to restart a

patient’s heart and breathing when the patient suffers heart failure (his or her heart
stops). CPR may involve simple efforts such as mouth-to-mouth resuscitation and
external chest compression. Advanced CPR may involve electric shock, insertion of
a tube to open the patient’s airway, injection of medication into the heart, and, in
extreme cases, open chest heart massage.
Do not resuscitate (DNR) order: A written order that tells medical professionals
not to perform CPR. There are two types of DNRs: Hospital and nonhospital. A
hospital DNR is only in effect for the length of the hospitalization and needs to
be renewed for each hospitalization. A nonhospital DNR needs to be signed by a
physician and reviewed every 90 days. The doctor does not have to sign it every
90 days, and it is assumed to be in effect unless there is evidence to the contrary.
Emergency workers are often required to try to resuscitate people who call 911,
regardless of whether they have a DNR or not.
Artificial nutrition and hydration: Artificial nutrition and hydration is a form of

life-sustaining treatment. It is a chemically balanced mix of nutrients and fluids,
provided by placing a tube directly into the stomach, the intestine, or a vein.
Do not intubate (DNI) order: A written order that tells medical professionals not
to place someone on an artificial respirator in case of heart failure or cessation of
breathing.
Requests to Die and Physician Assisted Suicide

According to WebMD, euthanasia is the intentional termination of life by somebody other
than the person concerned at his or her request. Assisted suicide means intentionally
helping a patient to terminate his or her life at his or her request. The word euthanasia
comes from the Greek language and translated into “good death.”
Since death is a certainty, trying to ensure a good death would seem like a natural
process. However, dying in America is not easy thanks to modern technology and conflicts
of values among stakeholders. Although there is now a large foundation of legal opinion
clarifying the issues of patient autonomy and the roles of different stakeholders, the
issues around euthanasia continue to be debated.
Requests Physician Euthanasia Substituted

to Die Assisted Suicide Judgment
or Proxy
Who Decides? Patient Patient Other than Patient, as much as
patient possible
Who Takes Action Other than Patient Other than Other than patient
to End Life? patient patient
The major difference between requests to die and physician-assisted suicide (PAS) is
who actually conducts the final action that causes death—the patient or someone else.
In physician-assisted suicide, the physician helps the patient obtain the means to die, but
the patient is in complete control of the process and takes the actions necessary to cause
death—administering the drugs, etc.
Euthanasia can also be used to describe situations in which physicians administer
or withdraw specific treatment to cause the death of an incompetent patient. The ideal
situation is when a patient has appointed a legal proxy/health care and made his or
her preferences for end-of-life treatment clear. Unfortunately, this ideal situation is the
exception rather than the rule.
The Debate Around Euthanasia and the Right to PAS
While the law is relatively clear on the right of a competent patient to forego or withdraw
treatments, there is still disagreement over whether competent patients have the right
to actively end their own lives by medical means. Not surprisingly, these issues evoke
impassioned debate. Indeed, some opponents of euthanasia assume that anyone who
makes a decision to end his or her life must be, by definition, incompetent. The main
issues about which people disagree include:
• The right to die: Do people even have the legal right to assistance in dying or com-
mitting suicide? There is disagreement over the interpretation of legal precedents and
what they mean.
• The definition and value of suffering and dignity in relation to the value of life:
Is the lack of a right to assisted suicide in essence being forced to suffer? Or is it a
protection against murder and abuse? What is the value of life as patients approach
death? Is balancing suffering, dignity, and quality of life against the value of life itself
creating a nihilistic death culture or a culture of natural compassion?
• The slippery slope: Does euthanasia open the door to the slippery slope of legalized
murder? There are well-documented instances of medical abuses in history:
Unnecessary hysterectomies provides a major example. What do we need to protect
ourselves from and how? Is it valid or necessary to restrict certain rights that would
produce a good to protect from a possible harm? Disability groups such as Not Dead
Yet see legalizing euthanasia as a dangerous precedent that devalues disabled persons
and will lead to abuses that unfairly target the poor and disabled.
• The role of physicians and the Hippocratic oath: Does the Hippocratic oath forbid or
condone euthanasia? Is it binding or a guideline? How should the medical establish-
ment retain the value of historic ethics and values in the face of changing practice
and technologies?
• Healthcare spending implications: How should physicians, hospitals, governments,
payors, and society at large make decisions about allocation of scarce resources?
How does the push for new life-saving technology fit in with today’s cost contain-
ment efforts?
• The physician’s role: Is it the physician’s role to help the patient experience as easy
a death as possible as part of good practice and a lifelong continuum of care? Or is
euthanasia “fundamentally incompatible with the physician’s role as a healer?”
The Bouvia case highlights the issues of quality of life and autonomy. Who gets to
define whether someone’s suffering or quality of life is more important than society’s
imperative to protect people from harm? How is harm defined? For both of these
individuals, being powerless to control their own destinies was a fate worse than death.
As we saw in the case of Karen Ann Quinlan, the physicians’ discomfort with the
decision to withdraw treatment caused a drawn out conflict with her family. Elizabeth
Bouvia was force fed based on professional discomfort of physicians, lawyers, and judges
with her treatment decision. Even when she was eating, a doctor who felt she might still
be trying to starve herself by not eating enough started force feeding her again, against
her will.
Jack Kevorkian held patient autonomy as an absolute, and he let patients define the
nature of their own suffering. Thus, some of the people he helped complete suicide were
suffering from nonterminal conditions that made them feel that life was not worth living,
such as a woman who had chronic vaginal-pelvic pain. While public opinion was against
him because of his seemingly indiscriminate use of his suicide technologies, Kevorkian
trained a national spotlight on suffering not related to terminal illness. He revealed
the need for new approaches to treating depression, chronic pain, and other kinds of
suffering. Interestingly, Kevorkian was found not guilty in all cases of his involvement in
PAS, with the exception when he committed active euthanasia.
As of 2011, active euthanasia was only legal in three countries: the Netherlands,
Belgium, and Luxembourg. Assisted suicide is legal in Switzerland and, in the United
States, Washington and Oregon.
On October 27, 1997, Oregon enacted the Death With Dignity Act, which allows
terminally ill Oregonians to end their lives through the voluntary self-administration of
lethal medications, expressly prescribed by a physician for that purpose. The Oregon
Death With Dignity Act requires the Oregon Health Authority to collect information
about the patients and physicians who participate in the act, and publish an annual
statistical report.
Eleven years later, physician-assisted suicide was passed in Washington State. The
Washington Death With Dignity Act passed on November 4, 2008, and went into effect
on March 5, 2009. This act allows terminally ill adults seeking to end their life to request
lethal doses of medication from medical and osteopathic physicians. These terminally ill
patients must be Washington residents who have less than 6 months to live.
In December 2008, a Montana district judge ruled in the case of Baxter v. State of
Montana that Montana residents have the legal right to physician-assisted suicide. On
December 31, 2009, the Montana Supreme Court ruled against an appeal by the attorney
general of Montana, affirming 4-3 that physician-assisted suicide is not “against public
policy” in the state of Montana. Note that these rulings did not represent legislation
identifying under what circumstances PAS may be performed in Montana (see chapter 9
in this handbook).
The legalization of PAS in places like Oregon, Washington, Switzerland, Belgium,
and the Netherlands creates strict processes and protections around the conditions
acceptable to help someone end their lives or do it for them. These systems require
aggressive treatments for all kinds of suffering—physical, emotional, and spiritual. Rather
than opening the door to the slippery slope of unregulated and out-of-control euthanasia
abuses, very few people actually get to the point of completing suicide in the places
where it is legal.
When patients are empowered to control their own decisions, they seem to choose
against death in most cases. Even Bouvia didn’t choose to end her life once she got
the power over her own decisions. Even so, her experiences revealed a dismal lack of
preparedness on the part of the American medical and payer systems to deal with the
disabled and injured among us.
Elizabeth Bouvia suffered from severe cerebral palsy and quadriplegia and was
abandoned by her parents as a child because they couldn’t take care of her. In 1983,
with her physical condition declining, nowhere to live, or means to support herself,
Bouvia attempted to end her life by asking a hospital to provide her with morphine
while she starved herself.
A court ruled against her, stating that the hospital could not be forced to help
her die, and instead she was force fed. Bouvia tried to resist the force feeding by
biting through the feeding tube. Four attendants would then hold her down while
the tubing was inserted into her nose and liquids pumped into her stomach. Some
physicians called this battery and torture, while others claimed that the hospital was
right to err on the side of continued life. Bouvia sued to have the unwanted tubes
removed from her body. The trial court refused, and she appealed. The appeals court
overturned the trial court, ruling that:
By refusing petitioner the relief which she sought, the trial court, with
the most noble intentions, attempted to exercise its discretion by issuing a
ruling which would uphold what it considered a lawful object, i.e., keeping
Elizabeth Bouvia alive by a means which it considered ethical. Nonetheless,
it erred for it had no discretion to exercise. Petitioner sought to enforce
only a right which was exclusively hers and over which neither the medical
profession nor the judiciary have any veto power. The trial court could but
recognize and protect her exercise of that right.
The feeding tubes were removed, but she did not die, and she remains alive as
of 2012.
111
Chapter 13
End-of-Life Decision Making:

An Irish Perspective
Dolores M. Dooley
Introduction
During the last decade a national conversation has been under way about death and
the process of dying in the 26 counties that constitute the Republic of Ireland. The Irish
Hospice Foundation, in collaboration with the Health Service Executive, launched national
surveys, telephone interviews, personal interviews with health care professionals and
patients, media discussions, and focus groups from across the country discussing death
and dying. The research was conducted with a view to ascertaining the views of Ireland’s
population about topics including: how a “good death” is understood, how hospitals can
better deliver end-of-life care, wishes about being informed of a terminal condition, role
of families in end-of-life decision making, advance directives, pain management, use or
refusal of life-prolonging technologies, and physician-assisted suicide and euthanasia. The
results of research are numerous publications designed to be user-friendly and accessible
and aimed at informing and educating the Irish public, health care professionals, patients,
and families. Educational initiatives continue to come from the Irish Hospice Foundation,
as well as courses on death and dying that are now appearing in university course listings,
all indicating the national conversation continues.
The discussion of end-of-life decision making in this article refers to what has been
referred to as a national conversation about death and dying in the Republic of Ireland
during the last decade (Doyle, 2008). The conversations are at national level or in the
kitchens of Irish homes and even the pubs in towns and cities. The words of Murray and
Jennings, speaking of hoped-for reform in end-of-life-care in the United States, echo ef-
forts to develop Ireland’s national conversation among laypeople and professionals alike:
The next decades should be, we believe, a time of education and soul-searching
discussions in communities and at kitchen tables, as well as in health care settings.
[…] We must talk about what we dare not name, and look at what we dare not
see. We shall never get end of life care ‘right’ because death is not a puzzle to
be solved. Death is an inevitable aspect of the human condition. But let us never
forget: while death is inevitable, dying badly is not (Murray & Jennings, 2005,
p. 57).
The Republic of Ireland comprises 26 out of the 32 counties that make up the island
of Ireland. The six northern counties (Northern Ireland) come under the jurisdiction of
the United Kingdom. The current population of the republic is approximately 4.5 million.
Ethnic and Religious Profile
A decade and a half of in-migration has altered the ethnic and religious landscape of the
Republic of Ireland. The 2011 Irish census of population shows the ethnic composition is
approximately 88.1% Irish while the percentage of non-Irish nationals was 11.9% of the
population. Of the 11.9% non-national population in Ireland, non-Irish nationals from
the European Union (EU) comprised 71.0%, while non-EU nationals constituted 29%.
According to results of the April 2011 census, Ireland remains predominantly a Catholic
country, with over 84% describing themselves as Roman Catholic. However, compared
to the 2006 census, the 2011 census results show a significant increase since 2006 of
persons self-identifying as Muslim (1.1%), making it the most expansive non-Christian
religion. Among others who declared a religious affiliation in the 2011 census are members
of Church of Ireland, Presbyterians, Methodists, Jehovah Witnesses, Hindus, Buddhists,
and Pentecostal Christians. There was a large group of people who chose the no religion
category, a 45% increase on the 2006 census, while other categories such as agnostic
and atheist were entered as a written choice on the census by over 7,500 respondents.
These details of Ireland’s size as well as the ethnic and religious diversity are relevant to
ongoing national projects around death and dying that are detailed below. From a more
dominantly homogeneous population a decade ago (ethnically and religiously), health
care centers now have to develop greater awareness and sensitivity that patients and
families may have divergent cultural and religious views about what comprises a good
death, how much they wish to be decision makers in treatment choices, the role of the
family in such decisions, and where they would wish to die.
Irish Hospice Foundation
During the last decade, the Irish Hospice Foundation (IHF), a national charity set up in
1986, has worked in partnership with the Health Service Executive (HSE) that replaced
10 regional health boards and a number of other agencies and organizations to provide
health care for the population in Ireland. The Minister for Health has overall responsibility
for the HSE in government.
A 5-year, 2007-2012, Hospice Friendly Hospital program (HFH), funded by the
IHF and Atlantic Philanthropy, introduced public consultations; national surveys; and
interviews with patients, families, and healthcare professionals with the aim of making
end-of-life care central to hospital care and bringing it from the margins to the mainstream
of Irish health services. To this end, a series of 22 workshops were conducted and covered
End-of-Life Decision Making: An Irish Perspective 113
a spectrum of ages, disability groups, gay and lesbian groups, the homeless, traveller
groups, legal experts, and palliative care groups. These groups presented their views on
how challenges of dying, death, and bereavement should be addressed in Ireland. Ten
public meetings were also held around the country to facilitate participation in the forum.
This extensive exercise was intended as a listening one, designed to identify participants’
wishes and aspirations for end of life (Keegan, McGee, Brady, et al., 1999; Weafer, 2004;
Weafer, McCarthy, & Loughrey, 2009; Weafer, 2009a; Weafer, 2009b; Quinlan, 2009a;
Quinlan, 2009b; Quinlan and O’Neill, 2009; Carroll, 2009; McCarthy et al. 2011.
Weafer’s survey of 2004 showed that two thirds of participants wanted to die at
home, but more than 70% of people actually die outside their own home: 48% in acute
hospitals. An estimated 25% of people die at home, 4% die in hospice, and some 20%
die in long-stay facilities (National Audit, 2008/9). Given the high percentage of persons
who die in hospital, a national audit of end-of-life care in hospitals was conducted in
Ireland 2008-2009. The audit assessed the quality of care provided by Irish hospitals in the
last week of life as patients and their families went through the journey of dying, death,
and bereavement. This is a first ever national audit of end-of-life care in Irish hospitals,
and while the quality of care for people who die in an Irish hospital compared favorably to
other hospitals in the United States, the United Kingdom, and France, the main countries
for which we comparative data, significant weaknesses were also identified. The National
Audit aims to structure reviews of improvements in hospitals against quality standards for
end-of-life care with the goal of having hospitals become a more hospitable place to die.
National research analyses give broad indications of what people living in Ireland
understand about decision making at end of life, what their hopes are for good dying,
what fears they have about the process of dying, and patients’ preferences for a family
role in end-of-life decision making (Weafer, 2009a, 2009b; McCarthy and Loughrey,
2009; McCarthy, Weafer, & Loughrey, 2010).
McCarthy et al. (2011) utilized the research data to develop eight case-based ethics
modules to enhance the decision making capacity of patients, families, and the general
public in relation to their own deaths and those of their loved ones.
Understandings of a Good Death
Features of a good death were highlighted in focus groups convened during Weafer’s
qualitative research for the IHF (2009). These include a fast and peaceful death (preferably
in your sleep); being cared for at home, with adequate medical support; no pain or
suffering involved; to be conscious and able to communicate; having your family with
you when you die; having control over the time and circumstances of one’s death; your
children reared and independent; with enough time to get your affairs in order; dying
with dignity and all that entails. Most respondents (70%) in a national telephone survey
agreed with the statement that “every competent person has the right to refuse medical
treatment even if such refusal leads to their own death.” Most agreement came from
those less than 56 years old (McCarthy, Weafer, & Loughrey, 2010, p. 455). That spiritual
and religious support would be important drew much agreement (73%), particularly by
those more than 65 years old.
Minimal Understanding of End-of-Life Terminology
While there are certain desires for one’s dying, the general public as well as Irish legislators
are largely unfamiliar with terms associated with end-of-life treatment and care such as
advance directives, palliative sedation, artificial nutrition and hydration, and physician-
assisted suicide. However, terms such as postmortem, cardiopulmonary resuscitation
(CPR), do not resuscitate (DNR), persistent vegetative state, and euthanasia indicated
more knowledge perhaps owing to the fact that media discussions in Ireland and TV
hospital series from the United States used these terms. The unfamiliarity with end-of-life
terminology, in general, is consistent with the Irish Council for Bioethics (2005) findings
that the Irish public’s knowledge and awareness of various bioethical areas was quite
limited. Research over the last decade also showed that death is a topic that is generally
discussed by Irish people with reluctance. Conscientious attendance at wakes provides
a somber but more intimate occasion to discuss death and dying although a consensus
emerged in the research that older people (and to a lesser extent the terminally ill) are
more likely to discuss different aspects of death and attend funerals. Quinlan claims there
is evidence of a culturally specific Irish attitude to death. There is a frankness about death
in the United Kingdom and the United States that is absent in Ireland (Quinlan, 2009a,
p. 7).
Being Informed of a Terminal Condition
Most people want to be informed if they have a terminal condition, though differences
emerged about whether they would want this information given to them on their own
or with someone present, the latter being mostly family (McCarthy, Weafer, & Loughrey,
2010). Quinlan & O’Neill, (2009) conducted interviews with health care practitioners
working in 15 Irish hospitals and found that information about diagnoses and prognoses
is often shared with families instead of patients (particularly older patients) at end of life.
Pain Management
While pain management is cited by health care professionals as a most important objective,
there are constraints on achieving this goal. Patients face difficulties in speaking about
their pain and seeking pain relief. This difficulty applies to adults but especially to children.
McCracken and Keogh (2009) found that describing pain was not easy for patients, and
sometimes a patient, may think he or she will be perceived as a complainer and incur the
displeasure of staff. Family members can, at times, obstruct pain alleviation by choosing
not to have their loved one receive palliative care. One reason for this reluctance is
that they do not want their relative to be told that they have terminal cancer. Family
insistence on this matter would not harmonize with palliative care philosophy of honest
communication about diagnoses if the patient asks. Patients and families both expressed
some reluctance to take up the suggestion of hospice care since the very term, hospice
care conjures up a place to die and/or a place where their loved one would receive
too much pain medication and so be confused or unable to communicate with family.
This failure to seek palliative care often means that pain continues needlessly and the
moral obligation of carers to provide for the well-being of patients is not met (Quinlan
& O’Neill, 2009). Furthermore, clinicians and families claimed that, at times, they had
serious concerns about the possibility that adequate pain relief could bring about an
earlier demise of a patient, which, in turn, might be interpreted as physician-assisted
suicide (McCarthy, Loughrey, Weafer, & Dooley 2009, pp. 462-463). These impediments
to pain management pointed to an urgent need for education in effective and ethical pain
management as well as education in palliative care for Irish health care professionals and
the wider public (McCarthy et al., 2011, pp. 222-223).
Decisions on Life-Prolonging Technologies
A finding in Irish research was the belief in the right of every competent person to refuse
medical treatment even if such refusal leads to one’s death. The Health Service Executive,
in conjunction with medical specialists and laypersons, is currently preparing a set of
guidelines on DNAR (do not attempt resuscitation). Hospitals, nursing homes, and long-
term care centers have, for years, operated differing practices regarding CPR provision,
and the HSE recognised the urgent need for some consistency in practice guidelines. As
of this writing, these were scheduled to be available in late 2012. Advance directives
(ADs), drawn up by persons with capacity, often can provide indications of circumstances
when the person, who later may lose capacity, would wish to refuse CPR. As of this
writing (2012), there is no specific legislation in relation to advance directives. Some
clinicians view a patient’s AD as consultative in assisting end-of-life decision making but
the implementation is not legally required (Campbell, 2006). The Jehovah Witnesses
have drawn up their own AD form that details the terms of refusal for specific medical
treatments (Dooley & McCarthy, 2012, pp. 226-227). The right of adult, competent
Jehovah Witnesses to refuse blood is acknowledged under the broad legal presumption
that there is an absolute right in a competent person to refuse medical treatment even
if it leads to death. A series of Irish court cases mainly involving the refusal of blood for
minor children of Jehovah Witnesses make clear that the Irish medical profession will not
accept proxy refusal of life-saving procedures where children are concerned. Rather, a
determination of the best interests is made by the health care clinician in conversation
with the family of a child needing life-prolonging treatment.
In 2007 the Irish Council for Bioethics (ICB) published an opinion document called
Is it time for Advance Healthcare Directives? Public consultations were organized and
submissions sought that informed the preparation of a detailed discussion document on
ADs in Ireland, including recommendations for the implementation of ADs. In 2009 the
Law Reform Commission (LRC) published a report, Bioethics: Advance Care Directives,
which recommended that an appropriate legislative framework should be enacted for
ADs. This framework would be facilitative in nature and be seen in the wider context of
a process of health care planning by an individual. Furthermore, the LRC made clear that
the framework for ADs does not alter or affect the current law on homicide, under which
euthanasia and assisted suicide are criminal offences (LRC, 2009, p. 101).
In the absence of legislative developments to implement the recommendations of the
LRC and the ICB, a Think Ahead Project was launched by the Irish Hospice Foundation.
A form has been prepared that encourages and facilitates people to fill in their personal
details and other information that could be crucial at some time in the future in ensuring
that their wishes or preferences for end-of-life care are known to others: family, general
practitioners, hospital services, solicitor, emergency services, etc. Copies of the forms are
available at www.thinkahead.ie.
Decisions on Artificial Nutrition and Hydration
One life-prolonging treatment that has proved controversial in Ireland is the provision
of artificial nutrition and hydration (ANH). The question asked echoes that in the
international literature: Is the provision of ANH a universal obligation or is it a form
of medical treatment that is optional depending on the circumstances of a particular
patient? An Irish court case, In Re a Ward of Court was decided in the courts in 1996
and is relevant to the legal and ethical complexity of deciding when ANH is appropriate
([1996] 2 Irish Reports, p. 79). A 46-year-old woman, Lucy Chamberlain, suffered anoxic
brain damage under anesthetic during a routine gynecological procedure 24 years earlier
when she was 22 years old. During these 24 years, Chamberlain was in a near persistent
vegetative state and lacked capacity and any ability to speak. She was fed through an
nasogastric tube and, later, a percutaneous endoscopic gastrostomy tube was inserted.
Chamberlain’s mother applied to the courts to determine whether it was permissible in
Irish law to withdraw the PEG tube. The High Court and, on appeal, the Supreme Court
held that it was lawful and it was in Chamberlain’s best interests that the ANH should
be withdrawn and she should be allowed “to die in accordance with nature with all
such palliative care and medication as is necessary to ensure a peaceful and pain-free
death” (Law Reform Commission 2009, 22). The Irish courts also declared that, after this
judgment, the nonuse of antibiotics for treatment of infections, other than in a palliative
way to avoid pain and suffering, was also lawful. The courts also made an order allowing
Chamberlain’s family to make such arrangements as they considered suitable to admit her
to a facility that would not regard the withdrawal of ANH to be contrary to their code of
ethics. The case of Chamberlain also clarified the authority of families in determining life-
prolonging decisions. The leading Irish authority on the role of families can be found in
Re a Ward of Court (1996) and is possibly best summarized by Hamilton C.J., a member
of the Supreme Court at the time of the Ward case.
The court’s prime and paramount consideration must be the best interests of
the Ward. The views of the committee and family of the ward, although they
should be heeded and careful consideration given thereto, cannot and should
not prevail over the court’s view of the Ward’s best interest ([1996] 2 IR, 79, p.
106).
Most of the time of course, there is no court—but the strict legal rule is as stated
above.
The Irish Medical Council (IMC), the official registration body for medical doctors,
offers this position on ANH:
If a patient is unable to take sufficient nutrition and hydration orally, you should
assess what alternative forms are possible and appropriate in the circumstances.
You should bear in mind the burden or risks to the patient, the patient’s wishes
if known, and the overall benefit to be achieved. Where possible, you should
make the patient and/or their primary carer aware of these conclusions (IMC,
2009, 20).
The Irish Association of Palliative Care (IAPC, 2011a) claims that currently available
evidence is insufficient to make universal guidelines for practice with regard to use of ANH
in patients receiving palliative care. Moral and legal arguments are discussed in a variety
of legal and ethical contexts in Ireland—arguments for withholding, or withdrawing
ANH as well as arguments for the universal moral obligation to provide food (Dooley &
McCarthy, 2012, pp. 131-133).
Physician-Assisted Suicide and Euthanasia
Physician-assisted suicide (PAS) and euthanasia are both legally impermissible in Ireland.
Under Irish law, any person who deliberately ends the life of another person is potentially
guilty of murder. It makes no difference that the person consented to the action or even
that he or she requested that this should happen. The law does not permit a person to
consent to his or her own death even though Irish law recognizes a competent person’s
right to refuse life-saving treatment. The right of competent refusal is further reiterated
by the IMC (2009). Having acknowledged the Irish legal situation on assisted suicide, the
discussion about physician-assisted suicide or suicide with the help of others surfaces in
the media at intervals, thus indicating that the national debate continues. The IAPC argues
that reasons of public interest and threats to physician integrity are strong justifications
for an unwillingness to legally endorse PAS or euthanasia (IAPC, 2011c). There have
been no prosecutions of Irish health professionals in relation to either assisted suicide or
euthanasia. It is thought that the position taken in the English case of R v Cox is likely
to be followed in Ireland, effectively prohibiting euthanasia (McCarthy, et al., 2012, p.
319). The debates continue about the differences between a deliberate and intentional
act of taking one’s life and the omission of treatments to prolong that life. Meanwhile,
the IAPC, cognizant of the arguments to support PAS or euthanasia that suffering and
inadequate palliative care are often contributing factors, strongly recommends continued
development of specialist palliative care services throughout Ireland (IAPC, 2011b).
Conclusion
There is a dawning realization in our culture that the way we treat death and dying is
a reality we have too-long ignored. The societal practice of focusing all our skills and
expertise on cure fails to address the broad and complex landscape of end of life. This
broad and complex landscape is the terrain for the work ahead and explained in the Irish
Hospice Foundation’s 3-year strategic plan 2012-2015.
119
Loss, Grief, and Mourning

Chapters 14 – 20
Chapters 14 through 20 focus on loss, grief, and mourning. The Body

of Knowledge Committee defined this major category of thanatology
knowledge in this way: the physical, behavioral, cognitive, and social
experience of and reactions to loss, the grief process, and practices
surrounding grief and commemoration.
The chapters in Part 3 focus on loss, grief, and mourning in terms

of these indicators: culture and socialization, religion and spirituality,
historical and contemporary perspectives, life span issues, the family
and larger systems, and ethical and legal issues. Six of the chapters
are revised from the chapters that appeared in the first edition. One
chapter (15) we brought over unchanged from the first edition.
121
Chapter 14
Culture and Socialization in Death,

Grief, and Mourning
Paul C. Rosenblatt
Among the thousands of world cultures there are great differences in how death is
understood and how people are socialized and expected to grieve and mourn. What
is meant by the word “culture”? “A culture” is a set of beliefs, values, ways of talking,
rituals, ways of relating to other people, ways of organizing life, ways of defining self
and others—all more or less unique to a particular group. Typically a culture has its
own distinctive language and a long history. Of course all humans have a great deal in
common, but it is arguably true that everything arises from culture and is given meaning
and form by it, including dying, death, and grief.
“Socialization” is embedded in culture and is both the process by which people come
to fit their culture and the process by which others around shape them to fit the culture.
Socialization, development, and change go on throughout life, because all that happens
to them, the people around them, the mass media, and the culture(s) that surround them
and that they travel through constantly impact them.
“Culture” and “socialization” are abstractions, concepts that help to focus our
attention and summarize things we think we know. They can be useful terms for
communicating and thinking, but they can also mislead us into believing we know more
than we actually do. So even as this chapter offers ideas about how to think about
people dealing with death, the reader should not let the partial truths of this chapter
erase personal curiosity, awareness, questioning, doubts, learning, and ways of thinking.
Understanding Culture and Socialization as
They Relate to Death
Culture and culture-based socialization are always at work in the areas of death, grief,
and mourning. Cultures differ, for example, in what is appropriate in the relationships of
a dying person with those who are likely to survive him or her. Thus, from Korean culture
there is evidence that, while a mother is dying, her children may not speak in her presence
as though she is dying (Rosenblatt & Yang, 2004). But even though they may not talk
about her dying, they know she is dying and work to deal with the pending death. In
particular, the mother and children work at carrying out intergenerational obligations that
would be spread over many years if she were not going to die soon. For example, a dying
mother may work to teach a young adult daughter to be a good cook, and adult children
may move toward a higher level of achievement and responsibility as a dying gift to their
mother and as a token of their respect and obligation.
Following a death, cultures differ substantially in the expressions of emotion that
are appropriate. For example, some African-Americans reported feeling that, on the
average, African-Americans are more expressive at the moment of death and at the
funeral than are Euro-Americans (Rosenblatt & Wallace, 2005b). There are cultures in
which grieving people may become mute (e.g., Wikan, 1988, writing about women in
Cairo, Egypt). There are cultures where bereaved people may injure themselves at the
onset of bereavement or become so enraged as to be dangerous to others (Rosenblatt,
Walsh, & Jackson, 1976). There are cultures where sadness and grieving are typically
masked by smiles (e.g., Heider, 2011, writing about the Minangkaubau of West Sumatra,
Indonesia). These culture-based emotional differences, in fact, all culture-based matters
discussed in this chapter, challenge simplistic, ethnocentric notions about grief pathology.
If the concept of grief pathology means anything at all, it must be applied with awareness
of the culture(s) involved. What is pathology in one culture may be normal, accepted,
and even desirable in another.
Often socialization has played a big part and continues to do so in shaping the gen-
ders in a culture to grieve in patterns that differ, so one would not find women doing
certain things that grieving men do not or vice versa. Among the trends in gender dif-
ferences across cultures, there are more cultures in which if anyone weeps in bereave-
ment it is a woman and if any one rages in bereavement it is a man (Rosenblatt, Walsh,
& Jackson, 1976). But it would be a mistake to take the gender patterns in any specific
culture and assume they are universal, or even to assume that they are necessarily always
followed in the culture in which one notes the patterns.
Cultures differ widely in which significant family and community members are likely
to be present when a person is terminally ill or has died. Related to this cultural practice,
cultures differ quite a bit in who counts as the principal mourners when someone dies. In
many cultures, the people likely to be present and to express strong feelings may include
many more paternal kin than maternal kin, because the large majority of cultural groups
around the world have kinship systems centered on the male line. In quite a few cultures,
those who would be most heavily involved would include a large extended family or even
a clan (e.g., the Hmong, see Fadiman, 1997), rather than the nuclear family that might
often be involved in many families in the United States.
Many cultures have a defined mourning period that might last 6 months, a year,
or longer, during which the principal mourners are limited in what they can do or what
they can wear and in their affective expression (Rosenblatt, Walsh, & Jackson, 1976).
For some people, not being able to engage in culturally appropriate mourning is very
Culture and Socialization in Death, Grief, and Mourning 123
upsetting and may even be experienced as dangerous to themselves, their family, or the
spirit of the deceased. In many cultures with extended mourning periods, the period of
formal mourning is ended by a second funeral, which may include ritual handling and
disposal of the remains of the deceased (Rosenblatt, Walsh, & Jackson, 1976).
Cultures differ in how the deceased is thought of. A deceased family member may be
understood to continue as an active and helpful presence in the lives of surviving family
members. But in some cultures the deceased may be seen as dangerous to the living or
dangerous if the proper rituals are not practiced. In some cultures these matters may
change over the months following a death. For example, shortly after a death people
may fear that the deceased will want other family members to die to keep him or her
company, but years later the spirit of the deceased may be seen as no longer interested
in the lives of the survivors.
Grieving people in many cultures develop stories (narratives) about the person who
died, the dying, the death, and the consequences of the death (Rogers, 2004; Seale,
1998). These stories reflect culture and the life experiences that are significant in that
culture. For example, in the United States, with its long and harsh history of racism,
African-American narratives about a deceased family member may address how the life
and the dying of deceased were affected by racism (Rosenblatt & Wallace, 2005a). And
the narratives people in a culture develop reflect their belief systems, their understand-
ings of how the human body works, their understandings of where misfortune comes
from, and their understandings of the actions of the spirits of the deceased in the lives of
the living. For example, Hmong immigrants in Australia (Rice, 2000) who are trying to
make sense of child and maternal death may turn to traditional beliefs that the woman
carried too heavy a physical load, that she behaved badly toward her parents, that her
labor in childbirth was too long and difficult, that the life aura of the mother and baby
were imbalanced, or the mother had a chance encounter with a malevolent spirit. Or, to
take another kind of example, in some cultures most or all deaths are seen as caused by
humans, even deaths that many in the United States would consider deaths by disease,
natural causes, or accident. In such cultures, an important part of grief narratives is the
identification of who was responsible for the death and why and how that person caused
the death (for example, Brison, 1992, describing a culture in Papua New Guinea). How-
ever, in some cultures, narratives are not an important part of grieving. In particular, there
are cultures where people do not often talk about a death. For example, Turkish family
members may not talk about a death with each other and may expect visitors not to men-
tion the death (Cimete & Kuguoglu, 2006). This constraint minimizes the development of
shared narratives and perhaps even the development of personal narratives.
Cultures are not monolithic, internally consistent, or unchanging. There could be
quite a lot of diversity in a culture in, say, ritual practices at a death, the meaning of dying
in a certain way, ideas about how to grieve, or the importance of observing a particular
mourning practice. For example, Israeli Jewish culture offers contradictory values about
what a good death is (Leichtentritt, 2004). Or, to take another example, Muslims in a
small town in the Netherlands are diverse in how they observe the religious injunction to
bathe the corpse of a family member (Venhorst, 2012-2013). And cultures change. They
may change in contact with other cultures or as their economic and political environments
change. But not everyone in a culture changes at the same time or in the same ways, so
culture change increases a culture’s diversity in how people deal with death. Even within
a family there may be substantial differences in views about how to deal with a death
or how to grieve. Also, some families have members who have roots in more than one
culture. When there is diversity within a culture or family, there may be interpersonal
tension or conflict at the time of a death or afterward as the cultural differences in dealing
with dying and death play out. There also may be intrapersonal tensions as a person
wrestles with internalized competing cultural values about what to believe, what to do,
what is proper, and so on (see, for example, Lohmann, 2005, writing about a situation
in Papua New Guinea where people in a community are torn between traditional beliefs
and recently acquired Christian beliefs). Nor is culture change always in the direction of
abandoning traditional ways. In some cultures, people have worked to revive traditional
ways. For example, some Muscogee Creek Indians of Oklahoma have revived interest
in and participation in ceremonial grounds death rituals (Walker, 2008). Then, too,
sometimes what changes is not the cultural practice but the meaning and function of the
practice—for example, Edwards et al. (2009) have written about how a particular Maori
cultural practice in New Zealand has changed from helping the spirit of the deceased to
move to the next world to being a way to recruit support for the most bereaved.
Some thanatologists emphasize the common humanity we all share with regard to
dying and death, giving a sense that we are all in important ways the same. Perhaps
there is similarity across cultures in certain matters. For example, for most people in
the many described cultures around the world a death of somebody close to them has
an emotional impact and causes sadness and personal disruption. But there is no good
evidence supporting the notion that how people deal with death is the same across
cultures (Klass, 1999b). In fact, it is consistent with this chapter and with the crosscultural
research literature to assume that there is substantial diversity of cultures in all matters
dealing with dying, death, grief, and mourning. Thus, even if it is true that for most
people in the many described cultures around the world a death of somebody close to
them has an emotional impact and causes sadness and personal disruption, the emotional
impacts are quite diverse, the way sadness is expressed is quite diverse, and the personal
disruptions are all quite diverse.
Many cultures are minority cultures, surrounded by a dominant culture that may limit
their culturally appropriate ways of dealing with death. According to Fadiman (1997),
Hmong immigrants to the United States from Laos, for example, may find hospitals
resistant to the large clan gathering when a person is dying that is very important in
Hmong culture. The local community and police may try to stop them from carrying out
important rituals that involve animal sacrifice or four days of drumming and chanting.
But if these rituals are not carried out, Hmong grieving may be entangled in anxieties and
Culture and Socialization in Death, Grief, and Mourning 125
fears about the spirit of the deceased, what other Hmong think, and a sense of having let
down both living and dead. Moreover, the Hmong may be under pressure from hospital
authorities to autopsy a body of a deceased relative, but body mutilation has horrifying
meanings in Hmong culture. One can argue that despite the demands of a surrounding
culture, people in a minority culture need to grieve and dispose of a body their way, that
anything less than that violates their human rights and may have dire consequences
for the course of their grieving, relationships within the family and community, and the
spiritual well-being of surviving family and community members and the deceased.
Relating and Helping Across Cultural Lines
If we want to understand and help people we cannot make the assumption that they
are like us or like people from our own culture(s) or that they grieve and mourn the way
a textbook or a theory says people do or should (Rosenblatt, 1993, 1997, 2012). The
theories and realities offered in psychological and related sciences certainly have their
uses, but they are generally embedded in a particular culture and history in ways that
should make us very cautious in using them (Gone, 2011). We also should not stereotype
people, making assumptions that because they belong to a specific culture we know how
they will and should grieve. In any culture, people are diverse. From that perspective, fact
sheets or other materials that give a simple characterization of how the people in some
culture deal with death can be very misleading (Gunaratnam, 1997; Rosenblatt, 1993,
1997, 2012). We have to be open to, understand, and respect cultural differences in the
emotionality of bereavement and in how to understand and make sense of a death. And
as part of that, we have to be open to the complexity, diversity, and changing qualities of
how people within a culture deal with death.
To be effective, those of us who work with the dying, the bereaved, and their families
have to be knowledgeable about culture and ethnicity (Stroebe & Schut, 1998), at the very
least because it makes us aware of possibilities. For example, knowing that in Zulu culture
there is great stigma about HIV/AIDS and that widows traditionally do not look others in
the eye (Rosenblatt & Nkosi, 2007), we will be prepared for that if we are working with
a Zulu widow and, perhaps even more, we will be open to that as a possibility in working
with anyone, no matter what their culture. But even more we have to develop good skills
at understanding the beliefs and realities of the specific people who we hope to help
and to respect what they say as valid, important, and appropriate. At the very least that
means we need to put aside our assumptions about how people do or should deal with
death and be ready to work comfortably and nonjudgmentally with people as they reveal
themselves to us in the situations in which we encounter them.
In situations where it is not rude to be curious, it can be useful to ask people what
they understand to be true and what they think is appropriate for themselves and for us
in relationship with them. If a person thinks and feels primarily in a language other than
English, it can be helpful to realize that there are concepts, feelings, relationships, and
much else that do not translate well, if at all, into English. Related to this awareness about
language differences, it might be helpful to make an attempt to understand key terms in

the other person’s language, for example, feeling terms. And if the terms do not translate
well into English, it could be of great value to develop at least an intuitive sense of their
meanings and to engage in conversation that respects those terms. For example, there is
a traditional term in Ojibwe, gashkendam (McNally, 2000, p. 109), which combines grief,
lonesomeness, affliction, dejection, homesickness, and melancholy. Part of providing
support to someone who is Ojibwe and who speaks of feeling gashkendam following
a loss might be to ask the person to help one to understand the term and then for it to
become a term that is used in your conversation with each other. But then understanding
the language of another might not simply be a matter of learning to translate and
learning the meanings of words that do not translate well. Sometimes people do not
put their feelings and understandings to words in a direct way. For example, in some
cultures, crucial aspects of people’s thoughts and communication about the aftermath of
a death might not be statements of feeling or memory but something else—for example,
proverbs, tales, parables, and culturally meaningful nonverbal gestures (Bagilishya, 2000).
Understanding these types of communication too can be difficult but might be important
if one is to be of help. Sometimes it is of great help to others if we make an effort to
understand their terms and meanings in their own language. In fact, for a would-be
helper even to try to learn what might be appropriate to say in another’s language upon
entering the presence of someone who is dying or grieving might be very helpful. But at
the same time, people realize that there are cultural differences and may be tolerant of
our attempts to understand and deal with them, even if what we do may be inappropriate
or amateurish by their cultural standards.
From the perspective of socialization, a time of need or crisis may be when people
most struggle to grow as individuals, whether they want to or not. For example, people
who are dying or who are bereaved might hunger for a sense of what is normal and
appropriate and how they can best deal with their difficulties, fears, and internal changes.
This is a time when some turn to others. It may be a time when they try to learn more
about their own culture(s). It is also a time when they might be open to aspects of other
cultures; even rather alien ones, that offer something that fits for them. However, it
may be unhelpful, alienating, and harmful to try to change people from their socialized,
culture-based actions, thoughts, beliefs, and rituals. It may be precisely when people
are dying or grieving that they most need to function as they think their culture and
socialization tells them to function. In adhering to their own culture and socialization they
may find a sense of security, of knowing what is right to do, of giving meaning to all that
is going on, and of doing things right by the standards of God or the gods. From that
perspective, the socialization that goes on at this time might be as much socialization for
the would-be helper from an outside culture as it is for the dying or the bereaved.
127
Chapter 15
Religion and Spirituality in Loss,

Grief, and Mourning
Dennis Klass
Issues in religion and spirituality are inescapable when we grieve and when we try to
help the bereaved because religion is about human limitations. To be sure a great deal
of what we call religion and spirituality is about claiming political power for one group
and denying it to other groups, or about rules that keep the society orderly, or about
maintaining ethnic heritage. Still, at their best, religions are about life on the boundaries:
the boundaries between myself and others, between meaning and absurdity, between
hope and despair, between life and death. Difficult bereavements bring us to the boundary
of life and death, and so there the potential meaning of life and the potential meaningless
of life becomes clear, the possibilities of both hope and despair are present, the boundary
between me and the person who has died as well as the boundaries between me and
other mourners become both defined and blurred.
Even though the religious issues might be at the heart of grief, religion may or may
not be helpful to people as they try to come to terms with a significant death (Tedeschi
and Calhoun, 2006). Grief tests the assumptions about how the universe works and our
place and power in the universe (see Landsman, 2002). For some people, their prior
religious life proves adequate to the task. They come out of their grief more secure in their
faith than when they entered it. A man told me that as he stood in front of his mother’s
body in the casket asking why, his father quoted scripture to him, “The Lord giveth and
the Lord taketh away. Blessed be the name of the Lord.” At that moment, he told me,
he knew he was called to be a Christian minister. On the other hand, for some people,
their prior religious life is not adequate to their grief. I remember sitting in a meeting of
bereaved parents when the topic was Where was God when my child died? One woman
said that after her child died she lost her faith. Then she added, “But I got a new one
that’s better.” Testing, confirming, modifying, or abandoning prior religion or spirituality
is not simply a matter of belief. “Coming to terms with the loss of our assumptive worlds
is primarily about learning new ways of acting and being in the world” (Attig, 2002,
p. 64; see Klass, 1999, chapter 5 for a fuller discussion of the vicissitudes of faith in
individual grief).
The religious rituals, beliefs, and symbols that we find in grief are the same as those
that offer guidelines in other aspects of life. A basic religious question, for example, is
what is our relationship to our body? All religions offer guidelines on how to dispose
of corpses as well as on the moral management of our sex drives. Should the body be
preserved to await physical resurrection? Should the enduring bones be separated from
the perishable flesh? Should the body be burned because the true self has no further
need of it? To take another example, religions offer possible meanings for both physical
and emotional suffering. Is suffering positive? Or is suffering negative because happiness
is the normative or natural human state? Is it an occasion for participating in Christ’s
redemptive suffering or to realize Buddhism’s First Noble Truth, or is suffering simply
to be endured stoically or deadened as much as possible? When the bereaved tap into
the rituals, symbols, and beliefs of religions, they do so within the whole context of the
rituals, beliefs, and symbols that are woven into their lives and into the communities and
cultures in which their lives are set.
There are, of course, many assumptions people make about how the universe works
and about their place and power in that universe, and many, many ways by which
religious meanings can be symbolized. We are at a very interesting time in human history
right now. Most people in other times had access to only one or two religious traditions.
If you were European, you were probably Christian. If you were Thai, you were probably
Buddhist. With developments in technology of communications and travel, all the world’s
religious traditions have a voice in modern times. There are many Pentecostal Christians
in Mexico City and Tibetan Buddhists in New York City. We have Americans who have
never been on a reservation, but for whom Native American rituals are meaningful, and
Hindus who find French existentialism fits their life. Our age, then, is characterized by
the meeting and mixing of religious traditions in a way that has few historical precedents.
In traditional societies with only one religious tradition, Tony Walter (1994) says
religious rituals, symbols, and teachings prescribed the inner experience of the mourner.
Prescribe literally means prewrite, that is, the community rituals supplied the narrative
that was the inner experience of the mourner. With the rise of modernity, however, the
old rituals lost much of their power to order the mourners’ inner worlds. People in grief
today, therefore, have an incredible range of symbols available to them. That means
their grief narratives are not prewritten, so they must engage in the difficult task of
writing their narratives for themselves. There are, of course, many for whom the rituals
still prescribe the inner narrative. For religious leaders, that is at it should be (Grassman
and Whitaker, 2006). For others, however, their religious heritage is a grab bag of images
from popular culture, a few texts and living examples from grandparents, and some
symbols that have helped them make sense of their adolescent struggles, all integrated,
more or less, into the radical individualism that permeates American culture (see Bellah,
Madsen, Sullivan, & Tipton, 1985).
That means that if we are to take grief seriously, especially if we want to hold
ourselves out as experts in helping the bereaved, we need to have a rather good grasp of
Religion and Spirituality in Loss, Grief, and Mourning 129
the symbols by which people find meaning or lose meaning, and the religious traditions
that supply those symbols. In this brief chapter we cannot give readers the advanced
course in world religions that would be helpful to them, nor can we reduce the world’s
religions to a few simple formulas. We can, however, think about some problems in
the way religion and spirituality are presented in a great deal of the clinical lore about
grief, and we can present a method that allows helpers to work with people from many
religious traditions and at the same time give themselves a bottoms-up education in the
world’s religious traditions.
Is There Spirituality Without “Religion?”
We need to spend a few moments looking at the words religion and spirituality.
Spirituality and religion are often defined in opposition to one another, in the clinical
lore and popular literature about grief. Religion is thus negatively associated with the
external, authoritarian doctrines of Christianity, while spirituality is positively associated
with the individual search for truth, meaning, and authenticity (Garces-Foley, 2006). Thus
we often hear, I’m spiritual but not religious. This way of defining the terms, however,
dates only from the mid-1980s and does not hold up to critical analysis. Lucy Bregman
(2006), a scholar in the psychology of religion, says the term spirituality is a useful “glow
word.” She finds that not only has the term spirituality become fuzzier rather than clearer
over time, but by the beginning of the 21st century, it had been sprung free of any
intellectual or cultural context. She notes Unruh, Versnel, and Kerr’s survey (2002) of as
many empirical and clinical studies as they could find that focused on spirituality. They
discovered 92 definitions of spirituality, which they could sort, only with a great deal of
effort, into six very disparate categories.
Human service professionals, especially those who base their practice in humanistic
psychology, are more likely to distinguish between religion and spirituality than other people
do. In both the United States and Ireland hospice, personnel tend to be spiritual while the
patients tend to be religious (MacConville, 2006; Garces-Foley, 2006). Thus there may be a
real disconnect between those who would help and those they would help.
The conclusion I would draw from this brief look at the claim that there is a spirituality
separate from religion is that we need to recognize that spirituality is a religion too. If we
use any of the 92 definitions as we work with the bereaved, we are missing most of what
the bereaved are experiencing as they stand at the boundary of life and death, meaning
and absurdity, hope and despair. Spirituality may be the religion that provides meaning to
our lives, but the bereaved we seek to help very well might have religions with different
symbols that give meaning to their lives.
Official Religion and Lived Religion
One of the difficulties we face as we try to help the bereaved from religious traditions
that are different from our own is the gap between the official version of a religion and
the same religion as we find it in bereaved individuals and communities. The problem
is a practical one because as we look for the literature that will help us learn about
bereavement in a religious tradition, we often find that it is written by religious leaders

who are describing the official version or orthodox practice, not what people actually
do. The official theology of a religion is only one element of the way grief is narrated or
the way grief is expressed. In different cultural settings the same religion often provides
very different styles of grief. Unni Wikan (1988), a Norwegian anthropologist, studied
mothers whose children had died in Egypt and Bali, both Muslim cultures. Officially, Islam
teaches that each death has been predetermined, even predestined, but the teaching
is interpreted differently in different cultural settings. In Egypt, emotions are to be
expressed, because mental health is damaged if they are held in. Egyptian village women
beseech God “to help them through the miseries they see as inescapably grounded in
their own human lot... Theirs is a very close and present God, compassionate, just, and
forgiving. Should not God not understand that sadness is one thing, subjugation to his
will is another?” (Wikan, 1988, p. 459).
Wikan says that in Bali the family, including the mother, try to restrain their emotions
and work to maintain a calm composure, especially to those outside the family. “But even
among intimates, their reactions will be moderate, and laughter, joking, and cheerfulness
mingle with mutely expressed sadness” (p. 452). In Bali, she says, sad or negative
emotions are not to be expressed because the emotions can spill from the individual to the
community and thus cause the spirit of the individual and of the community to weaken.
In the weakened state both the individual and the community would be vulnerable to
black magic that causes up to 50% of deaths.
We find the same range of cultural differences within the official versions in all
religious traditions. For example, the realization that all things are impermanent forms the
basis of Buddhism. The suffering in grief is, for esoteric Buddhism, the beginning of the
path that will lead to enlightenment. “All life is suffering” is the First Noble Truth. Yet in
many Buddhist cultures, the religious rituals during the dying process and in bereavement
are not to realize the Noble Truth. Rather the rituals are to build merit, often by devotion
to a Bodhisattva, that can then be transferred to the deceased to help them toward a
better rebirth. To achieve enlightenment, Buddhism officially teaches, we have as many
lifetimes as we need. Reincarnation, rebirth to another lifetime, is a literal reality. Yet, in
Japan, although the doctrine of rebirth remains in the tradition, in fact the dead, even
the great founders of the various Buddhist sects, become ancestors and stay a part of the
family and so are not reborn. For American converts to Tibetan Buddhism, reincarnation
plays almost no part in their grief, and merit plays no role in in how they see themselves
helping the bereaved or continuing their own bonds with the deceased (see Goss and
Klass, 2005, chapter 2; Goss & Klass, 2006).
The examples from Islam and Buddhism that we have given illustrate how the official
teaching of a religion is not a good place to learn about how to help the bereaved from
those traditions. We could, had we space, give further examples from all the world’s
religious traditions.
Beyond the gap between official religious teachings and the way the religion interacts
with grief, we also see that there are major historical changes in all religious traditions in
terms of some basic themes that come up in bereaved individuals and families. In some
cases, when people immigrate from one culture to another, the religion changes in just
a generation or two. Bereaved children or grandchildren in immigrant families may have
very different religious frames than their bereaved parents or grandparents. There are also
significant changes over the centuries. In the Western religious traditions, for example,
continuing bonds with the dead are often described in terms of the dead appearing to
the living as ghosts. When we look at those accounts over the last 2500 years, we find
an incredible diversity as well as a historical development (Finucane, 1996). We find
great differences between individuals in any Western tradition, and between subcultures
in how the appearances of the dead are described, what the dead expect, and how the
living can respond to the dead. Heaven as a place the dead go has also undergone a
lengthy historical development (McCannell & Lang, 1988). In clinical work, we often find
any individual may hold simultaneously several ways of understanding the deceased’s
being in heaven and experience their continuing bond with the deceased in ways that
may or may not match their ways of understanding heaven. Unless we point it out, the
bereaved may feel no contradictions between those views and experiences. When we
investigate the official teachings of the religion about afterlife and continuing interactions
with the dead, we are likely to find they bear little resemblance to the heaven in which
the bereaved hope to rejoin their dead family members or to the active interaction with
the dead that the bereaved maintain.
Learning World Religions From the Bottom Up
Amidst all this diversity, how are we to help the bereaved with the religious issues that are
so central to grief? I would like to suggest a practical scheme that we can use to help the
bereaved in religious/spiritual issues whether they be in our own cultural world or from
cultural worlds very different from ours. First I will define the elements we find in religion
as it is lived and show that each can be both problematic and helpful in grief. Second, I
will look at the relationship of these elements that we can use to locate ourselves within
the religious life of the bereaved.
Our definition must be useful in two ways: First, it must be applicable to all the
world’s religious traditions. Thus, an answer like, Religion is beliefs about God is wrong
because not all religions have a god (and some have no god or gods). Further, in most
religions, belief is not the most important part (see Smart, 1996). Second, to be useful we
need a definition that will allow us better to understand the complexities of people living
their everyday inner and interpersonal lives, not just the official teachings (see Chidester,
2002).
A useful definition of religion includes three elements. First, encounter or merger
with transcendent reality, that is, the sense that there is something beyond our mundane
existence that we can, at least for moments, experience as an inner reality. Second, a
worldview, that is, a higher intelligence, purpose, or order that gives meaning to the
events and relationships in our lives. Third, a community in which transcendent reality and
worldview are validated. We can see this triune structure in many religious traditions. In
Islam, for example, Allah is the god who can be found but who cannot be understood by
human intelligence, the prophet Mohammed was given the revelation to which humans
should conform their lives, and the Ummah is the community of all those who submit
to Allah. Buddhism has the three refuges: the Buddha, the Dharma, and the Sangha.
Christianity affirms the trinity of God the father who is unknowable in Himself, God the
son who is in human form, and God the holy spirit who is the giver of understanding
and the under girder of the church. In Chinese religion, which is an amalgam of Taoism
and Confucianism, heaven or ti is the unnamable reality, Tao is the ordering principle
in nature, and li is the ordering principle by which humans can find harmony within
society. In each of these traditions, the sense of the transcendent, finding purpose, and
membership in community are all necessary elements of religious or spiritual life.
A significant death can reverberate in each of those elements in both helpful and
unhelpful ways. In the first element: If when I pray, I feel close to God who feels like a
protective father, who has blessed my marriage, I might very well feel abandoned by
that father when the marriage was cut short because He did not answer my prayers that
my husband recover from cancer. On the other hand, I might also trust that as God has
protected me and my family on earth, He continues to protect my husband who is now
with God in heaven.
In the second element: If I believe there is a divinely ordained plan for everything
and that nothing happens without a reason, it may be difficult for me to understand
any reason for a stray bullet from a fight among drug gangs going through the daycare
window killing my preschooler. If, on the other hand, I believe that I have very little
control over what happens to me, but I must control how I respond to events, then I
might not wonder why my child died, but be very determined to make something good
come from it.
In the third element: If I feel like I am alone in my grief, I will have a more difficult
time. Crying alone is incredibly painful. Crying with others who are also sad over the
death is painful, but also comforting. Communities that cry and remember together are
helpful in grief. On the other hand, if members of my family or community keep my grief
at a distance, and negatively judge my way of grieving, then the community is unhelpful.
I remember a young woman whose child miscarried in the seventh month. Some older
women in the church where she had been a very active member kept asking what she
had done wrong to make the baby miscarry while the minister kept telling her that the
baby’s death was God’s will and that her tears were a sign of her lack of faith. Needless
to say, that community was not helpful to her.
In each element I have given positive and negative examples using only the Western
religious traditions because I think those are the traditions with which most readers are
familiar. But as we learn how to include religious issues in our care of the grieving in a
multicultural and multireligious world, we will have to become acquainted with how
these elements interact with grief in the many religions, even the secular religion that
believes in spirituality. We have very limited resources for working with multiple religious
traditions. Kathleen Garces-Foley’s Death and Religion in a Changing World (2006) is a
good place to begin. The book Dead but not Lost: Grief Narratives in Religious Traditions
(2005) that I wrote with Robert Goss is another.
These elements are not discrete. They work together. I have found that we can
diagram the aspects as follows:
The first element, encounter or merger with transcendent reality, is our bond with
the transcendent reality (God in the Western traditions) that is often connected with our
bond or continuing bond with the dead person. The second element, a worldview, that is,
a higher intelligence, purpose, or order that gives meaning to the events and relationships
in our lives, is expressed in our assumptions of how the world works and what place and
power we have in the universe. The third element is our membership in a community.
My experience as a professional helping the bereaved is that as a statement in one of
the boxes changes, all the others will change. For example, very often as the continuing
bond with the deceased is established comfortably in the survivor’s life, the bond with
the transcendent becomes less troubling, the meaning of a survivor’s life becomes clearer,
and troubled relationships in the community or family become less of a barrier. To take
another example, when the bereaved person’s relation to the community changes from
alienated to integrated, the bond with the deceased and with transcendent reality feels
surer as does the meaning of the survivor’s life, and we often see a development in the
bereaved person’s understanding of the meaning of the death as well as of the dead
person’s life (see Klass, 1999, chapter 6).
As we grieve or as we work with any bereaved person or group of bereaved people,

we can listen closely and understand the content of each of the boxes as they are
experiencing them. We can also listen for the content of each of the boxes to which their
community’s rituals, beliefs, and symbols are pointing them. From what I have said earlier,
it should be clear that competent bereavement specialists will be especially attentive to
disconnects or discrepancies between the experience of the bereaved person and the
expectations of the community.
We do not have to know, then, how Muslims grieve to work with a Muslim individual
or family, just as we do not have to know what the Christian, Jewish, Buddhist, Taoist, or
whatever, way of grieving. We have already seen that the official guidelines and narrative
for the bereaved often have little to do with what bereaved people actually do. All we
have to do is to listen carefully and say as best we can how this individual or this family
understands how the universe works and their place and power in the universe, the
meaning of their lives and the meaning of the death, their bond with transcendent reality
and their bond with the deceased, and the meaning for them of their family, cultural, and
community memberships. We can learn our world religions, then, from the bottom up, not
from the top down. Instead of beginning work with people from traditions different from
our own with a stereotyped version of their religion in our mind, we can let the bereaved
be our world religions teachers. If we are open and listen carefully we might find that
people in our own religious tradition—even if it is spirituality—are quite different from us
in how religion interacts with their grief. We might also find that in some significant ways,
we and those we would help are alike, even if we are not the same.
135
Chapter 16

on Loss, Grief, and Mourning
This chapter explores some of the many ways in which clinicians, researchers, and scholars
have tried to explicate the concepts of loss, bereavement, grief, and mourning, together
with examples of some forms of postdeath assistance for bereaved persons.
Some Comments about Language

To begin, it might seem a bit odd that there should be many different understandings
and interpretations of experiences that are as basic and as familiar as loss, grief, and
mourning. After all, who among us has not encountered some of these experiences in his
or her life? Perhaps, however, it is precisely because these experiences are so fundamental
in human life that they have been looked at from many different perspectives by scholars
and researchers. That may be why there now appear to be altogether too many theories
of loss, grief, and mourning to examine in a single chapter. Consequently, here we can
only survey some of the most prominent accounts of these subjects.
Before we begin, it might be helpful to note some orienting thoughts. First, losses can
take many forms, most of which do not involve death and have been called “nonfinite
losses” (Harris, 2011). Second, almost all primary losses of all types are accompanied by
secondary losses, although the latter may not be immediately evident. Third, bereavement
is the term most often applied to the situation of individuals who have experienced
death-related losses. Fourth, grief is the term that identifies reactions to loss; properly
used, this term applies not just to emotional reactions but to all of the human reactions to
loss whether they are physical, behavioral, psychological (cognitive or affective), social,
or spiritual in nature. Fifth, mourning is the term used by some writers to designate all
of the intrapsychic and interpsychic processes of coping or learning to live with loss and
grief; by others it is restricted to social, public, or ritualized responses to loss. How one
understands mourning is critical, but those understandings are complicated by authors
who do not explain how they are using this term, who use it in different or inconsistent
ways, or who do not clarify whether it is distinct from or equivalent to the term grieving.
Sixth, cultural, religious, spiritual, social, and individual factors very likely influence how
grief and mourning are experienced and expressed (Parkes, Laungani, & Young, 1997;
Rosenblatt, 2008). Seventh, outcomes of mourning have been described in many ways,
such as regaining equilibrium or the ability to function in healthy ways in life, relearning
the world, developing new normals, or reconstructing meaning in life.
It may help to note here that terms such as recovery, completion, or resolution
are generally not favored by contemporary scholars since those words may imply a
misunderstanding of bereavement and grief or an implicit commitment to a fixed end
point for mourning. Even metaphors such as healing or getting through should be
used with caution since they may depict mourning in both helpful and unhelpful ways.
Above all, despite their prominence in the public mind and in some forms of professional
education, linear, sequential, or fixed stages in mourning have not been favored in most
recent thinking on these subjects. This may not be so surprising in light of the following
comments from the most well-known proponents of stage-based models (Kübler-Ross &
Kessler, 2005, p. 7):
The stages have evolved since their introduction, & they have been very
misunderstood over the past three decades... They are responses to loss that
many people have, but there is not a typical response to loss, as there is no
typical loss. Our grief is as individual as our lives.
The five stages...are tools to help us frame and identify what we may be feeling.
But they are not stops on some linear timeline in grief. Not everyone goes
through all of them or goes in a prescribed order.
Mourning as Detachment
Sigmund Freud was among the first to address these subjects, perhaps best known for
comments in, Mourning and Melancholia (1917/1961b). By melancholia Freud meant
what would now be called clinical depression, a deviant, complicated, and unhealthy
form of mourning. Freud’s mature view of normal or uncomplicated mourning seems
to have been that it involves a healthy, nonpathological response to the loss of a loved
person or object (physical or symbolic). Because one has invested one’s psychological
energy in such a person or object, there is pain involved in its loss. According to Freud,
mourning represents the work involved in uncoupling and achieving detachment or
emancipation from the lost object, work that reflects both a desire to hold onto that
object and a growing recognition that the object is no longer available as it once was.
This work is complex and can take a great deal of time and energy. For Freud, the goal
is to withdraw libido (broadly conceived as psychic energy) from the lost object, thereby
freeing the ego for new and healthy attachments. This is the work of grief. As Freud
wrote in Totem and Taboo (1912-1913/1961a, p. 65), “Mourning has a quite precise
psychical task to perform: its function is to detach the survivor’s memories and hopes
from the dead.” Many have taken the goal of detachment as Freud’s last word on the
Historical and Contemporary Perspectives on Loss, Grief, and Mourning 137
subject, but Siggins (1966) and Rando (1993) have suggested that may overstate or
misstate his overall view of mourning.
Acute Grief
In a seminal paper, Lindemann (1944) described typical characteristics of acute grief,
including somatic distress, preoccupation with the image of the deceased, guilt, hostility,
and alterations in usual patterns of conduct. Many bereaved individuals also adopt traits
belonging to the deceased in their behavior. According to Lindemann, grief work involves
efforts to emancipate oneself from bondage to the deceased, readjust to an environment
in which the deceased is missing, and form new relationships. Individuals who try to avoid
the intense distress involved in their experiences of grief may only inhibit and complicate
their grief work. For Lindemann, delaying or distorting grief reactions leads to morbid or
unhealthy forms of grief.
Attachment Theory and Stages of Grief
Drawing on a variety of perspectives and sources of evidence, attachment theory seeks to
explain the development of affectional bonds or attachments between child and parent,
and between one adult and another, in both human beings and higher order primates.
John Bowlby developed this theory to revise some central tenets of psychoanalytic theory
by showing that grief responses are instinctual, adaptational, and valuable for survival.
That understanding of grief enabled him to explain both normal and pathological
processes of mourning. His views on these subjects appear in early articles (e.g., 1961)
and in his three-volume work, Attachment and Loss (1969-1980).
Drawing in part on the work of Colin Murray Parkes (1972) with London widows,
Bowlby described four general phases seen in the normal, uncomplicated responses of
bereaved individuals to the loss of a loved one: (a) numbing, (b) yearning and searching,
(c) disorganization and despair, and (d) reorganization. Complicated (that is, abnormal)
responses are essentially distortions in onset, degree, or duration. Urges to locate,
recover, and reunite with a loved one, along with the anxiety, yearning, anger, protest,
and searching that typically accompany them, are not pathological in themselves. They
are part of a constructive process of making real (realization) in one’s inner world that
which is already real in the objective world. Over time, however, healthy mourning leads
to accepting the permanence of a death-related loss. If not, something has gone wrong
and grief becomes chronic or conflicted.
Tasks in Mourning
Worden (1982, 1991, 2002, 2009) recommended that we think of mourning as an active
process involving four tasks, here described in their most recent iteration.
• To accept the reality of the loss: This task involves overcoming disbelief and denial of
death by acknowledging and accepting the reality of the death.
• To process the pain of grief: Productive mourning acknowledges that it is appropri-
ate to experience pain during bereavement as long as the ways in which that pain is
experienced are not overwhelming for the bereaved individual.
• To adjust to an environment without the deceased: In pursuing this task, bereaved

individuals engage in a voyage of discovery to determine the significance of the now-
severed relationship, to identify each of the various roles that the deceased played
in the relationship, to adjust to the fact that the deceased is no longer available to
fill those roles, and often to develop new skills to fulfill roles formerly satisfied by the
deceased.
• Worden described a fourth task in different ways: to withdraw emotional energy
and reinvest it in another relationship (1982, p. 15); to emotionally relocate the
deceased and move on with life (1991, p. 16; 2002, p. 35); to find an enduring
connection with the deceased in the midst of embarking on a new life (2009, p.
50). The main point of this fourth task is to encourage bereaved persons to modify
or restructure their relationships with the deceased in ways that remain satisfying but
that also reflect the changed circumstances of life after a death. This task requires
bereaved persons to reconceive their own personal identity, restructure their relation-
ships with the deceased in the light of the loss that has taken place, avoid becoming
neurotically encumbered by the past in ways that diminish future quality in living,
and remain open to new attachments and other relationships.
Worden’s tasks reflect an interpretation of mourning as, in principle, a proactive way
of striving to manage one’s loss and grief. They depict mourning as involving a set of
interrelated tasks requiring effort intended to enable the bereaved person to regain some
measure of control over his or her life. Worden (2009, p. 39) wrote that although the
tasks of mourning “do not need to be addressed in a specific order, there is some ordering
suggested in their definitions.” He believes that mourners must accomplish these tasks
before mourning can be completed.
The Six “R” Processes of Mourning
Rando (1993) described mourning in terms of six R processes: (1) Recognize the loss—
acknowledge and understand the death; (2) React to the separation—experience the pain
of the loss; feel, identify, accept, and give expression to all of the psychological reactions
to the loss; and identify and mourn secondary losses; (3) Recollect and reexperience the
deceased and the relationship—review and remember realistically; revive and reexperience
one’s feelings; (4) Relinquish old attachments to the deceased and the old assumptive
world; (5) Readjust to move adaptively into the new world without forgetting the old—
revise the assumptive world, develop a new relationship with the deceased, adopt new
ways of being in the world, and form a new identity; (6) Reinvest.
According to Rando, mourners need to acknowledge and gain insight into their losses,
experience and express their reactions to those losses, connect with and restructure their
former attachments, and find ways to move forward in new modes of living. Rando also
drew attention to the many secondary or associated losses that are always involved in an
important primary loss. Mention of an assumptive world reminds us that we all function
within a set of assumptions concerning what we take to be real about ourselves and
Historical and Contemporary Perspectives On Loss, Grief, and Mourning 139
about the world around us. The process of reinvestment involves using one’s resources in
appropriate and rewarding ways both to form a new relationship with the deceased loved
one and to develop other or new sources of gratification.
Rando maintained that these six R processes must be undertaken for healthy
mourning. They are, she wrote, “interrelated and tend to build upon one another,
[although] a number of them may occur simultaneously” (1993, p. 44). Even though
they are set forth in a typical order, the sequence is not invariant: “Mourners may move
back and forth among the processes, with such movement illustrating the nonlinear and
fluctuating course of mourning” (p. 44).
The Dual Process Model
Stroebe and Schut’s dual process model (1999, 2010) combines three key elements in its
account of coping processes employed by bereaved persons: (1) loss-oriented processes
are concerned primarily in coping with loss and involve the intrusion of grief into the
life of the bereaved, grief work, and breaking bonds or ties to the deceased, as well
as resistance to change in the form of denial or avoidance of restoration changes; (2)
restoration-oriented processes are concerned primarily in coping with restoration or going
forward with effective living by attending to life changes, doing new things, and denial,
avoidance, or distraction from grief; (3) the oscillation between these two processes
reflects how grievers change their focus from time to time or even direct attention away
from bereavement-related issues.
Note that the term restoration as it is used in this model is not about trying to make
real once again the mourner’s former world of lived experiences (which no longer exists)
or the old assumptive world (which has also been shattered or at least rudely shaken by
the loss). Rather, it has to do with efforts to adapt to the new world in which bereaved
persons find themselves. What is restored, according to this model, is not a past mode
of living, but the ability to live productively in the present and future. Thus, both loss-
oriented and restoration-oriented processes address issues of coping; the difference
between them is centered on their meaning or focus and the model insists that at various
times a person coping with bereavement will shift back and forth (oscillate) between
them or even take time out from these efforts. The dual process model also suggests that
emphases in coping with bereavement may differ from one cultural group to another, one
individual to another, and one moment to another.
Meaning Making
Numerous authors have stressed the importance of meaning making for individuals who
have suffered a significant loss in their lives. For example, Attig (2000, 2010) has written
about relearning the world as a process that involves simultaneously finding and making
meaning on many levels. According to Attig, relearning the world includes grieving
individually, within our families, and within our communities and cultures, in ways that
“engage with several of the great mysteries of life in the human tradition” and that
allow us to “make a multifaceted transition from loving in presence to loving in absence”
(2001, p. 34).
Similarly, Neimeyer (e.g., 1998, 2000, 2001) has written extensively about the need
for bereaved persons to engage in a process of reconstructing meaning in their lives and
has asserted that, “Meaning reconstruction in response to a loss is the central process in
grieving” (1998, p. 110). Any individual griever may engage in this process at different
times, in different ways, and in different connections with his or her culture and community.
When a bereaved person finds it difficult to engage in meaning reconstruction or is not
able to accomplish this project, as might most often be seen in violent or traumatic
bereavements, it has been argued that harmful effects will likely follow. (A contrary view
has been offered by Davis, Wortman, Lehman, & Silver [2000] who presented evidence
that at least some persons bereaved after a sudden, unexpected death do not attempt to
seek meaning in their losses and may be no worse off for that.)
According to Neimeyer (2000, pp. 552-555) meaning reconstruction includes: (1)
The attempt to find or create new meaning in the life of the survivor, as well as in the
death of the loved one; (2) The integration of meaning, as well as its construction; (3)
The construction of meaning as an interpersonal, as well as personal, process; (4) The
anchoring of meaning making in cultural, as well as intimate, discursive contexts; (5) Tacit
and preverbal, as well as explicit and articulate meanings; (6) The processes of meaning
reconstruction, as well as its products.
Holland, Currier, and Neimeyer (2006) extended this point of view by distinguishing
between sense-making and benefit-finding as two central forms of meaning making.
Sense-making denotes the comprehensibility of the loss or the survivor’s
capacity to find some sort of benign explanation for the seemingly inexplicable
experience, often framed in philosophical or spiritual terms. Conversely, benefit-
finding refers to the significance of the loss and entails the survivor’s paradoxical
ability to uncover a “silver lining” in the personal or social consequences of the
loss, such as enhanced empathy, reordered life priorities, or a closer connection
to other people within or beyond the family (p. 176).
Among the conclusions drawn by these authors from their empirical study are the
following: (1) “[I]n general, sense-making is a stronger predictor of grief outcomes
compared to benefit-finding” (p. 183); (2) These findings “conform to a larger body
of empirical and theoretical literature, which challenges the notion that grief unfolds in
predictable patterns over time” (p. 183); and (3) “In summary, these results call for more
research on the ‘multiple meanings of meaning’... particularly around the way in which
these interact in adaptation to loss” (pp. 185-186).
Continuing Bonds
Drawing on research with bereaved children, spouses, and parents, as well as other
sources, Klass, Silverman, and Nickman (1996) noted the importance for many bereaved
persons of efforts to maintain a connection to the individual who has died. By contrast
with interpretations of mourning as involving detachment from, letting go of, or forgetting
the deceased, this viewpoint reflects the active efforts many bereaved persons make to
maintain a continuing bond, an internal representation of or ongoing connection with

the deceased individual. This bond is not static but dynamic. It involves negotiating and
renegotiating the meaning of the loss over time. It develops in ways that can allow the
deceased to remain a transformed or changed but ongoing presence in the inner lives of
the bereaved. Connections of this type “provided solace, comfort and support, and eased
the transition from the past to the future” (p. xviii).
According to these authors, although “the continuing bond has been overlooked or
undervalued in most scholarly and clinical work” (p. xvii) and there has been “little social
validation for the relationship people reported with the deceased or absent person” (p.
xviii), continuing bonds involve new and altered relationships that reflect “the reality of
how people experience and live their lives” (p. xix). They are aspects of normal mourning
processes and do not represent psychopathology. Putting stress on continuing bonds in
bereavement is, at least, an alternative to (if not a repudiation of) the view that mourning
does or should lead to total disengagement from or severing bonds to the deceased.
Resilience
In recent years, George Bonanno (2009) has been the leading proponent of the idea that
resilience is the most characteristic feature of the human experience of loss and trauma.
He and his colleagues have reported empirical data from both pre-loss and post-loss
situations showing that approximately 46% of those in their study exhibited little or
no distress following a significant loss in their lives and were able to maintain relatively
stable, healthy levels of psychological and physical functioning (Bonanno et al., 2002).
In particular, Bonnano (2004) has argued that resilience in the face of loss or potential
trauma represents a distinct trajectory from that of recovery, a trajectory in which normal
functioning temporarily gives way to threshold or subthreshold psychopathology (e.g.,
symptoms of depression or posttraumatic stress disorder [PTSD]), usually for a period
of at least several months, and then gradually returns to pre-event levels; resilience is
more common than often believed, is not a pathological or dysfunctional form of absent
grief, and does not lead to delayed grief reactions; and there are multiple and sometimes
unexpected pathways to resilience.
Proponents of the concept of resilience in bereavement maintain that grief need not
be overwhelming for most people, that the need to talk about loss is not essential for
many bereaved people, and that positive emotions and laughter can help. This concept
appears to undermine the so-called grief work hypothesis that all bereaved people do or
must go through stages in coping with loss. Bonanno’s view on this point is that “Grief
work processes are appropriate for only a subset of bereaved individuals...most likely
those actively struggling with the most severe levels of grief and distress...i.e., those
exhibiting either the recovery or chronic symptom trajectories” (Bonanno, 2004, p. 21).
This emphasis on resilience also appears to have implications for whether all or many
bereaved people—as opposed to a relatively small portion of such individuals—require
counseling or therapy to help with their adjustment to loss and grief.
Anticipatory Grief and Mourning

The concept of anticipatory grief was first introduced by Lindemann (1944) and has
since been subject to numerous inquiries. In general, anticipatory grief refers to grief
experiences that take place prior to but in connection with a significant loss, one that
is expected to take place but has not yet occurred—for example, grief that occurs in
advance of, but somehow still in relation to, impending death. A forewarning of death
is a necessary condition for anticipatory grief, but the heart of the matter is the grief
reaction to the anticipated, but not yet actually realized, loss.
Rando (1986, p. 24) originally defined anticipatory grief as, “The phenomenon
encompassing the processes of mourning, coping, interaction, planning, and psychosocial
reorganization that are stimulated and begun in part in response to the awareness
of the impending loss of a loved one and the recognition of associated losses in the
past, present, and future.” This very broad definition includes both grief reactions and
mourning processes. It refers equally to past, present, and future losses. It incorporates
a shifting time frame as the dying person moves toward death, and it encompasses the
perspectives of both the dying person and his or her survivors to be.
One problem with this definition is that the adjective anticipatory would seem to
be incorrect since the grief in question is not limited solely to future or expected losses.
A second problem is that the noun grief is inexact since the definition includes both
grief and mourning. For those reasons, Rando (1988) first argued that although the
phenomenon of anticipatory grief is real, the term itself is a misnomer. Subsequently, she
decided to shift to the phrase anticipatory mourning in a later book, Clinical Dimensions
of Anticipatory Mourning (Rando, 2000).
It seems clear, for example, that when a husband is dying, a wife may realize that she
is already without the help he used to give her around the house (a past loss), that she is
currently losing the vigorous ways in which he used to express his love for her (a present
or ongoing loss), and that with his death she will lose the comfort of his presence and
the plans they had for the future together (expected or anticipated losses). Each of these
losses may generate its own grief reaction, and each may stimulate a mourning process
in which one tries to cope with that loss and its associated grief reactions. However, these
experiences need not be inconsistent with maintaining the loving ties that characterize an
attachment between two living people.
We might clarify the meaning of anticipatory grief by adopting a narrower definition,
one that limits anticipatory grief (and mourning) to reactions (and responses) to losses
that have not yet occurred and are not yet in process—that is, to losses that have not
yet moved from expectation to reality. If so, reacting to and coping with dying would
become the master concepts in predeath experiences of grief and mourning (Corr & Corr,
2000). Prior to death, one might experience anticipatory grief and anticipatory mourning
related to losses that are expected to take place in the future, other (nonanticipatory)
grief reactions and mourning processes that are associated with existing losses (past and
present), and reactions to and coping with the new challenges that inevitably arise during
dying. Anticipatory grief and anticipatory mourning may affect the quality of post-death
bereavement, but they need not be any more (or less) significant in this matter than all of
the other aspects of coping with dying.
There is much that remains unclear about anticipatory grief and mourning. For example,
Fulton (2003) has noted his “serious reservations regarding the heuristic value—either
theoretical or practical—of the concepts, ‘anticipatory grief’ and ‘anticipatory mourning’”
(p. 350). These reservations arise from problems in conceptualizing, defining, measuring,
and validating the key concepts. Fulton also argues that much research in this field has
depended upon specific understandings of grief and mourning, notably psychoanalytic
assumptions that cohorts of bereaved persons will experience a comparable volume of
grief and will do so in a linear way. Conflating forewarning of death with anticipatory
grief has led some to assume that the latter will inevitably follow the former and will,
in turn, relieve the survivor of some share of post-death grief—when, as Fulton rightly
insists, they differ in both duration and form.
Disenfranchised Grief and Disenfranchised Mourning
According to Doka (1989, p. 4), disenfranchised grief is “the grief that persons
experience when they incur a loss that is not or cannot be openly acknowledged, publicly
mourned, or socially supported.” To disenfranchise grief is to indicate that a particular
individual does not have a right to be perceived or to function as a bereaved person.
Thus disenfranchised grief is not merely unnoticed, forgotten, or hidden; it is socially
disallowed and unsupported.
Doka (1989, 2002) argued that grief can be disenfranchised in three primary ways:
either the relationship or the loss or the griever is not recognized. (Note also that in 1989,
Doka added that some types of deaths, such as those involving suicide or AIDS, may
be disenfranchising deaths in the sense that they either are not well-recognized or are
associated with a high degree of social stigma. In 2002, Doka recast this idea to speak
of certain circumstances of death as disenfranchising and to note that ways in which
individuals grieve or grieving styles can contribute to disenfranchisement.)
Relationships are disenfranchised when they are not granted social approval. For
example, some unsuspected, past, or secret relationships might not be publicly recognized
or socially sanctioned. These could include relationships between friends, co-workers, in-
laws, or ex-spouses—all of which might be recognized in principle but not in connection
with bereavement—as well as relationships that are often not recognized by others as
significant, such as those involving extramarital affairs or same-sex relationships.
Losses are disenfranchised when their significance is not recognized by society. These
might include perinatal deaths, losses associated with elective abortion, or the loss of
body parts. Such losses are often dismissed or minimized, as when one is simply told, “Be
glad that you are still alive.” Similarly, those outside the relationship may not appreciate
the death of a pet or companion animals even though it may be an important source of
grief for anyone, regardless of age. Also, society often fails to recognize losses that occur
when dementia blots out an individual’s personality in such a way that significant others
perceive the person they loved to be psychosocially dead, even though biological life
continues.
Grievers are disenfranchised when they are not recognized by society as persons who
are entitled to experience grief or who have a need to mourn. Young children and the
very old are often disenfranchised in this way, as are mentally disabled persons.
Corr (1998, 2002) noted that these three factors (relationships, losses, and grievers)
are the key structural elements of bereavement. In addition, Corr argued that the dynamic
or functional elements of bereavement (grief and mourning) may also be disenfranchised.
For example, a bereaved person might be told by society that the way he or she is
experiencing or expressing grief is inappropriate and/or that his or her ways of mourning
or coping with the loss and the grief reactions are unacceptable. Some grief reactions
and some ways of mourning are rejected because they are unfamiliar or make others in
society uncomfortable.
However it occurs, “The problem of disenfranchised grief can be expressed in a
paradox. The very nature of disenfranchised grief creates additional problems for grief,
while removing or minimizing sources of support” (Doka, 1989, p. 7). Many situations
of disenfranchised grief involve intensified emotional reactions (for example, anger, guilt,
or powerlessness), ambivalent relationships (as in cases of abortion or between persons
who were once but who no longer are lovers), and concurrent crises (such as those in-
volving legal and financial problems). Disenfranchisement may remove the very factors
that would otherwise facilitate mourning (such as a role in planning and participating in
funeral rituals) or make it possible to obtain social support (for example, through time off
from work, speaking about the loss, receiving expressions of sympathy, or finding solace
within some religious tradition).
Grieving Styles
Many have claimed that patterns of grief and mourning are essentially related to gender,
with men and women grieving (or mourning) in different and contrasting ways. Against
this dichotomy, Doka and Martin (2010) have argued that the issue is not really one of
gender, but of style. Accordingly, they proposed a distinction between an intuitive grieving
style that emphasizes experiencing and expressing emotion versus an instrumental grieving
style that focuses on practical matters and problem solving. These contrasting styles are
depicted as poles on a spectrum in such a way that many people are likely to occupy the
broad middle with mixed or blended grieving styles. Doka and Martin concede that in our
society intuitive grieving styles may more often apply to women and instrumental styles
to men. However, they caution that these applications are not universal, noting that they
likely result from broad patterns of socialization that do not apply universally in rigid
ways. Because individuals of both genders have different backgrounds, personalities, and
ways of living out their lives, some women are instrumental grievers, some men are
intuitive grievers, and many or most bereaved persons adopt some aspects of one or the
other grieving style at different times and in different contexts. As a result, this analysis
tends to legitimize individuality in coping with loss and grief, even as it identifies shared
patterns among various groups of bereaved persons whose members may or may not be
of a specific gender.
Prolonged Grief Disorder
What was formerly termed pathological or complicated grief is currently in process of
being replaced by prolonged grief disorder (PGD), a phrase that is meant to identify
a situation in which a bereaved individual’s level of distress and ability to function is
extreme, disabling, and persistent. Leading advocates in this area (e.g., Prigerson,
Vanderwerker, & Maciejewski, 2008) have proposed that PGD be recognized as a distinct
entity within a new DSM category of attachment disorders and have described it as
applying to a relatively small group of bereaved individuals who are experiencing chronic
and disruptive yearning, pining, and longing for the deceased and who display at least
five of the following nine symptoms: “(a) avoidance of reminders of the deceased; (b)
disbelief or trouble accepting the death; (c) a perception that life is empty or meaningless
without the deceased; (d) feelings of bitterness or anger related to the loss; (e) emotional
numbness; (f) feeling stunned, dazed, or shocked; (g) feeling part of oneself died along
with the deceased; (h) difficulty trusting others; and (i) difficulty moving on with life” (p.
180). In each case, it is understood that the symptom disturbance characteristic of PGD
must cause marked and persistent dysfunction in social, occupational, or other important
domains and must last at least 6 months.
Proponents and critics of the concept of PGD recognize that it will be necessary to
clarify its relationship to normal or uncomplicated grief, on the one hand, as well as to
traumatic grief and posttraumatic stress disorder, on the other hand. In addition, there
are concerns about stigmatizing or pathologizing a normal reaction to loss and finding a
place for PGD within existing understandings of grief and mourning.
Challenging the Paradigm
We can sum up the most prominent recent developments in understandings of loss, grief,
and mourning by drawing on some ideas articulated by Doka (2011):
1. Grief is not just a matter of reactions to death itself: We need to take account
also of secondary losses, anticipated losses, disenfranchised losses, ambiguous
and nonfinite losses.
2. Rather than universal stages, grief and mourning are better understood as
involving personal pathways as seen in tasks, R processes, and the dual process
model.
3. Going beyond affect alone, grief is best seen as including physical, psychological,
behavioral, social, and spiritual dimensions, which may be expressed through
meaning reconstruction efforts and diverse grieving styles all influenced by
developmental and cultural variables.
4. Moving beyond passive coping, contemporary writers emphasize choices in

mourning, opportunities for transformation and growth, and resilience.
5. Rather than stressing relinquishing ties, recent scholars have highlighted
continuing bonds in the form of revisiting and renewing relationships with the
deceased.
6. While recognizing healthy resilience in most grievers, researchers have been
increasingly attentive to complicated variants in grief and mourning; efforts to
define prolonged grief disorder; and the need for careful assessment to determine
if, when, and which interventions are appropriate for individual grievers.
Helping Bereaved Persons
This is a huge topical area, one we can only briefly review here. Perhaps the first thing
to say is a motto from some hospice programs to the effect that Bereavement care
does not begin with the death, but with an admission. The hospice philosophy is well-
known for prizing holistic care for both dying persons and their family members, and
for advocating ongoing care for family members and members of the community after
a death has occurred. This care should involve avoiding unhelpful messages, providing
nutrition, hydration, rest, exercise, and social support, and helping bereaved persons with
cognitive, affective, behavioral, and valuational tasks.
Many bereaved persons will do well by calling on their own personal resources. They
may also benefit from support offered by family members, friends, members of the clergy,
and other community resources who offer to befriend, companion, or walk alongside
them. Combinations of self-help and mutual help are also seen in bereavement support
groups sponsored by hospice programs and other community agencies.
Funeral rituals are also meant to help bereaved persons, in this case by contributing
to three basic tasks: (1) disposing of the body of the deceased in appropriate ways, (2)
aiding in making real the implications of death, and (3) assisting in social reintegration
and meaningful ongoing living. Whether or not funeral rituals actually do contribute to
this task work depends on the rituals themselves; the individuals involved; and a variety
of cultural, social, religious, and ethnic variables. Thus, some have argued that memorial
rituals without the presence of a body, as is typical in a visitation, viewing, or traditional
funeral, serve some of the same purposes in more effective ways and at lower cost. To
expand and augment its services, the funeral industry in recent years has developed
aftercare programs that seek to meet the needs of their clients and communities by
offering what can involve a wide range of informal and formal services that follow (or, in
community services, precede) traditional funeral rituals (Weeks & Johnson, 2001).
Worden (2009) offered a helpful distinction between grief counseling or facilitating
the work of bereaved persons who are coping with normal or uncomplicated grief and
mourning, on one hand, and grief therapy, which designates more specialized techniques
used to help people with abnormal or complicated grief reactions, on the other hand.
From this point of view, grief counseling may be offered by a wide range of professionals,
although it is only fair to note that not all of them may be equally well-informed or
competent in this field.
Another point to consider is seen in a controversy concerning the claim that formal
grief counseling may not actually be effective and may perhaps even be harmful for some
grievers by producing what have been termed treatment-induced deterioration effects
(e.g., Jordan & Neimeyer, 2003; Neimeyer, 2000). The empirical basis for that claim has
been strongly criticized (e.g., by Larson & Hoyt, 2007), while Gamino (2011, p. 113)
offered what he called two fundamental findings:
First, it is only a minority of bereaved individuals who experience distress of
an intensity or duration that warrants professional intervention. Second, when
practitioners use sound psychotherapy techniques and empirically-documented
treatments to help troubled grievers, results are generally favorable.
Here we see the importance of bridging the gap between research and practice as
exemplefied in a recent volume on that subject (Neimeyer, Harris, Winokuer, & Thornton,
2011). For the grief counseling controversy, Gamino (2011) reported that he and a
colleague recommend asking a potentially troubled griever two simple questions: (1)
Are you having trouble dealing with death? and, if the response is positive, (2) Are you
interested in seeing a grief counselor to help with that?
149
Chapter 17
Life Span Issues and Loss, Grief, and

Mourning: Childhood and Adolescence
Kevin Ann Oltjenbruns
Research indicates that the experience of grief after a significant loss changes as life
stages vary. Corr (1996) reminds us that developmental processes play an important
role in determining how an individual deals with loss, as well as how one’s bereavement
experience may then influence subsequent development. Further, a person’s understanding
of the concept of death changes over time, as does the use of particular coping strategies.
A primary goal of this chapter is to build an argument that, to be effective in helping the
bereaved, we must use a developmental perspective. Examples relevant to childhood and
adolescence will be used for illustration purposes.
Given the literally hundreds of resources one could use to draw a broad-brushed
perspective of a child’s or adolescent’s grief, and given the very limited number of pages
available to address this extensive knowledge base, I have chosen to minimize the use of
specific citations in this chapter. I will use that strategy in those cases where a particular
finding has been cited so often that it is now perceived as common knowledge. However,
specific references will be used for either quotations or in instances where I feel a concept
can be more clearly tied to a particular author or researcher. Further, at the end of this
chapter, you will find reference to three books that discuss childhood and adolescent
bereavement in more depth and include extensive citations.
Common Manifestations of Grief in Childhood
After studying even a small subset of articles written about grief experienced during the
early years, it becomes clear that childhood bereavement is not “a different version of adult
mourning but rather one unique to the child’s capacities” (Sekaer & Katz, 1986, p. 292).
Further, certain manifestations of grief are more likely to occur during various substages
as compared to a later time frame. For example, regressive behaviors such as bedwetting
or thumb sucking, separation anxiety, fear of abandonment, fear that others close to them
will also die, guilt due to magical thinking, and feelings of insecurity are quite prevalent
during early childhood. Common outcomes of significant bereavement experience
in later childhood are more likely to include learning difficulties, school phobia, social
withdrawal, and anger. As time since the death grows longer, particular manifestations
shift over time; some are more common in the months immediately following the death,
and others may not appear until a couple of years later. Using data from The Harvard
Childhood Bereavement Study, Worden and Silverman (1996) discovered that 2 years
after a parent’s death, there were increased levels of social withdrawal, anxiety, and social
problems in the bereaved group of children compared to the nonbereaved control group.
Given the power of the longitudinal control group design, the researchers involved in the
Harvard study were the first to report a curvilinear relationship between the intensity of
certain feelings and behaviors and the length of time since the death.
There are many discrepancies among the findings of various childhood bereavement
studies (as there are in those focusing on adults) in terms of outcomes following death
of a loved one. It is clear that neither short-term manifestations of grief nor long-term
outcomes are universal and that the reader must critically analyze such aspects as
participant selection, research design, the source of the information about the child’s grief
experience—often the parent as compared to the grieving child (Paris, et al., 2009), and
what Luecken (2008) refers to as moderators toward resilience. Various protective factors
include family cohesion, positive parenting, strong self-concept, and positive self-esteem.
Risk factors that increase the possibility of more negative outcomes include the distress
experienced by the parent, diminished quality of caregiving, multiple secondary losses, as
well as minimal coping resources. One simple example of why the reader must attend to
sample selection involves the importance of various influencing factors such as culture.
Lopez (2011) summarizes various aspects of adolescent grief and bereavement that may
be influenced by culture, such as: perception of the loss, role of the family, expression of
grief, and communication patterns. Further complicating our understanding is the fact
that there are many myths surrounding our understanding of children and grief (Lancaster,
2011). These include: Children do not grieve, children do not need information, children
never need to go to the funeral, and many more. These misconceptions sadly guide many
adults’ interactions with the bereaved child and ultimately may increase feelings of grief
stress levels.
Adolescence. The grief of adolescents is multifaceted, as it is in other life stages. Common
reactions include feeling different from one’s peers, diminished social competency,
loneliness, dysphoric mood, guilt, confusion, anger, sense of powerlessness, inability to
concentrate, and acting out behaviors. Birenbaum (2000) studied the most frequently
reported children’s and teenagers’ responses (physical and psychosocial) in anticipation
of and after the death of a sibling from cancer. They found differing responses among
3-5 year-olds, 6-11 year-olds, and 12-19 year-olds at different points in time: 2 months
prior to the death and 2 weeks, 4 months, and 12 months after the death. Not only did
responses change over time, but also there were notable differences from one age group
to the other.
Life Span Issues and Loss, Grief, and Mourning Childhood and Adolescence 151
When an adolescent’s peer dies, many of the deaths are sudden and/or violent
(suicides, accidents, homicides). Questions related to why are common given that these
situations are regarded as unnecessary and often preventable. These types of deaths
frequently exacerbate particular reactions such as fear or anger and may be further
complicated by having had no time to prepare for the death. Death of an age-mate
typically raises issues dealing with personal mortality—possibly for the first time. Even
while engaging in certain dangerous behaviors (e.g., drinking and driving) because he
or she feels protected by the personal fable, some young persons begin to more fully
understand that they too may die.
Understanding of the Concept of Death
Childhood. Cognitive capacity and understanding of the concept of death varies over time
and influences how a child deals with the loss. Within childhood, one discovers significant
differences over time. The following summary is not meant to engender a debate as to
when one stage ends and another begins but is intended simply to encapsulate major
shifts; it highlights a generalization of capacities, rather than an agreement among all
researchers.
Early Childhood Middle Childhood Late Childhood

(2 – 4 Years) (4 – 6 Years) (7 – 11 Years)
• is quite egocentric • engages in magical • understands death is
• thinks in concrete, thinking, which final
literal terms diminishes over time • understands that
• focuses on here and • understands that death is a natural part
now death is irreversible of life
• believes death is • understands • has increased
temporary, reversible dead people are understanding of
• does not understand nonfunctional future without person
that death is universal • begins to understand who has died
• does not understand that death is universal • has more realistic
that dead persons are (age 5) understanding of
nonfunctional causality of death
• believes death is a
person
An understanding of children’s thought processes surrounding death provides
important insight into how a child is responding to the loss and can also help guide
appropriate support strategies. For example, since toddlers do not understand that
death is final and irreversible, they may repeatedly engage in seeking behaviors for
the deceased. Helpers, then, must explain numerous times that the loved one is not
ever coming back. Since that same youngster thinks in concrete and literal terms, it is
dangerous to use euphemisms that are confusing such as “grandma is sleeping” or “your
father has gone on a long trip.” Indirect communication not only confuses the child but
also may ultimately undermine trust in persons around him or her and/or trigger a fear
response. Not fully understanding the nature of death, young children may conclude that
they caused the death, simply by wishing someone would go away. Caregivers must give
concrete explanations as to what really happened, at a level children can understand, to
let them know that he or she did not cause the other person’s death.
Adolescence. Cognitive maturation during adolescence affects their ability to comprehend
death and related concepts. Adolescents’ increasing capacity to use abstract reasoning
and understand symbolism allows them to more fully grasp the meanings of life, death,
and time. With the ability to think in the abstract, adolescents become preoccupied with
their own thought processes, as well as what others may think of them; as a result,
teens often play to an imaginary audience. Young persons dealing with a significant
loss, then, may camouflage feelings for fear of being regarded as different and then
possibly ostracized by a peer group, thus working against a core age-appropriate issue of
developing a sense of belongingness.
Mastering Normal Developmental Tasks Within
the Context of Bereavement
The classic work by Erik Erikson (1963) notes that within each normative crisis, there
are related developmental tasks. Erikson believed that an individual deals with a series
of psychosocial stages or crises during the course of his or her life span. During the life
stages of childhood and adolescence, individuals are faced with challenges as they strive
to develop what Erikson labels autonomy, initiative, industry (mastery of skill), and a
sense of identity. The outcome of each crisis is closely tied to the type of environment
or social support that is available to an individual in that stage. Factors inherent to a
loss experience may propel a person toward a negative or compromised resolution of a
particular developmental challenge.
For example, the normative crisis of late childhood (initiative vs. guilt) involves
attempts to develop numerous skills valued by one’s own society, self-evaluation skills, self-
confidence, and interdependence. Those persons giving grief support must also encourage
success in each of these areas. Children should be allowed to continue to live their lives,
continue with school, lessons, sports, peer interaction, etc. These activities should not be
regarded as a distraction from grief, but rather as work toward accomplishing what needs
to be mastered at a particular life stage. Failure to accomplish such developmental tasks
may jeopardize mastery of subsequent tasks during later periods. This discussion brings
to mind Stroebe and Schut’s dual process model of coping. While we may naturally give
support to children as they engage in the loss orientation, we must also give support
to them to continue with a restoration orientation. This encouragement does not fall
exclusively to parents but may also be provided by other caring adults.
The death of a loved one during adolescence is likely to add considerable upheaval
to this time of life that is already characterized by ambivalence, struggle, and confusion,
making it a different experience than that encountered by grieving children or adults.
Erikson would define the key developmental task for adolescents as defining a sense
of personal identity. Numerous authors have posited a number of other developmental

tasks or core issues, including: refining self-image, feeling comfortable with a sense of
belonging, sustaining peer relationships, heightening a sense of mastery and control,
defining future directions for one’s self, among others. Each of these tasks may become
more difficult following a significant loss. For example, the death of one’s mother during
adolescence can complicate defining a personal sense of self since a parent is often used
as a reflection to help define either perceived positive or negative aspects of one’s self.
After the death of a parent, many adolescents feel pressured to assume some of the
responsibilities of the deceased; they may then struggle with accomplishing significant
development tasks of individuation and separation from family.
Coping Strategies and the Need for Support
Each individual brings to a crisis situation a variety of coping mechanisms that vary
somewhat by life stage, personality, and previous experience. Although some adults
would like to spare children the knowledge that a loved one has died and protect them
from the ensuing grief, this protection is not helpful. Children need the opportunity to say
goodbye, share feelings, and deal with emotions. Adults should be prepared to provide
support to children who experience a loss in a developmentally appropriate fashion.
Children often derive value from active strategies engaging in dramatic play and sharing
memories through artwork. Given that children’s language capacity changes over time
and they may not be able to articulate what they believe to be true about the loved one’s
death, the caregiver should be attuned to the various play and artistic activities that may
provide insight into children’s understanding and concerns.
Coping strategies change as one matures. For example, children often try to derive
comfort by seeking comfort from others, denying at times the impact of the loss, adhering
to familiar activities and routines, using fantasy to ameliorate aspects of the loss. As they
enter adolescence, young persons begin to engage in more effective behavioral coping
strategies (e.g., help seeking, problem solving, expressing feelings). A recent study by
Brewer and Sparks (2011) summarized a number of coping-related themes that an
adolescent sample in the United Kingdom found helpful: expressing emotion, engaging
in physical activity, involvement in positive relationships, understanding one’s area of
competence, developing friendships and social supports, having fun, and developing a
sense of humor. Further, adolescents begin to engage in cognitive coping strategies (e.g.,
search for meaning, positive reappraisal, development of a sense of gratitude in regard to
current circumstances, acceptance of the loss). One fairly recent phenomenon in relation
to adolescents’ strategies for coping involves their turning to the Internet and other
digital resources for support (DeGroot 2012; Sofka, 2009; Williams & Merten, 2009).
Normal developmental characteristics help one understand why a grieving adolescent
may turn to online resources for information about loss and various related outcomes.
Adolescents live in a world where they seek information and want to interact with others
24/7. Their imaginary audience may propel them to seek information in a confidential
manner so that they will not be regarded as different and not feel so self-conscious.
This interest, then, can drive them to the Internet where they may remain anonymous
if they so choose. Further, given the amount of time invested in staying connected with
others through various social media tools, it is understandable that a main means of
communication of one’s circumstances, thoughts, and feelings would be through such
tools as Facebook or text messaging. In recent years memorials to the individual who
has died have become virtual tributes to the deceased and tools for a collective network
to share their grief. De Groot (2012) found that communication, particularly with the
deceased on Facebook, served two functions: sense making and facilitating continuing
bonds (upholding relational continuity with the deceased). There needs to be much
more research into the efficacy of these digitally based strategies and whether they help
adolescents resolve their grief.
There is growing body of research that delineates that the nature of support
from caregivers is a key variable in regard to bereavement outcome for children and
adolescents. Lin, Sandler, Ayers, Wolchik, and Luecken (2004) examined many variables
that differentiate resilient children and adolescents from those with mental health
problems following the death of a primary caregiver. They found that those survivors
identified as resilient had surviving caregivers who provided greater warmth and more
discipline as compared to those bereaved children and adolescents who experienced
various mental health problems following the death. In a related study, Haine, Wolchik,
Sandler, Millsap, and Ayers (2006) confirmed the power of positive parenting as a
significant interpersonal resource that increased the likelihood of dealing with the loss
in a positive fashion. Another study concluded that children who are not supported in
early phases of grief could develop serious emotional and behavioral problems. Providing
education (and support) to surviving parents is important so that they might learn how to
more effectively help their children (Kirwin & Hamrin, 2005).
Facing the death of a loved one may ultimately strengthen available strategies for
coping with subsequent stressful events. Dealing with a significant loss may ultimately
result in negative emotional or physical consequences or, alternatively, lead to positive
outcomes. Despite the many challenges faced as a result of the death of a loved one,
many adolescents reported that grief experiences resulted in such positive outcomes, an
increased sense of maturity, a willingness to deal with responsibility at a young age, an
appreciation for life, an ability to cope with adversity, an increased sensitivity to others, an
increase in resilience, a sense of optimism, and a desire to help others in need.
Regrief Phenomenon
As years pass and the bereaved individual moves through later life stages, the context
for understanding an earlier loss and adjusting to it changes. Within the shift of
developmental capacitates and developmental tasks, an individual who experiences a
significant loss will often regrieve the loss at a later time, from a different and more
mature vantage point. Individuals may struggle repeatedly with a loss that occurred many
years prior. While some persons never do resolve the loss and get stuck in their grief,
the regrief phenomenon is a developmentally appropriate processing of the experience
from a different perspective than what was possible earlier. As one’s cognitive capacity
changes, a person often needs to add to what was understood earlier in order to create
a fuller meaning of the loss, which then supports one’s continuing healing. For example,
in a study of 125 children (followed for up to 7 years) following their fathers’ deaths as
a result of the 9/11 tragedy, Christ (2006) found many examples of revisiting their grief
over time, including the expression of grief, questions asked about the death, definition
of the loss, and shifting strategies to help come to terms with their grief.
Further, new issues may arise as an individual faces different developmental tasks as
he or she progresses through more advanced life stages. For example, as a young woman
struggles to refine her sense of identity (a normal developmental task of adolescence),
she may need to regrieve her father’s death of many years prior. Newman and Newman
(1999) stress that “one can review and reinterpret previous stages in the light of new
insight and/or new experiences…themes of earlier stages may re-emerge at any point,
bringing a new meaning or a new resolution to an earlier conflict” (p. 17).
Summary Remarks
One must wear a developmental lens in order to effectively help someone who is
grieving. It is crucial to understand an individual’s normal developmental capacities in
various domains (e.g., psychosocial, emotional, physical, and cognitive) and to be aware
of how those capacities interact with the need to accomplish certain developmental tasks
at a particular life stage. This interplay has much to do with how the bereaved person
defines the loss and how he or she uses both personal and interpersonal resources in the
journey toward healing. Only with that insight can a family member, friend, or helper
know the challenges faced by the grieving individual and only when that understanding
is available can a person offer help that is meaningful. Just as there are no universals
in regard to bereavement outcomes, it is crucial that we understand that there are no
absolutes when it comes to most effective intervention strategies. Many have been found
to be efficacious for those who have participated. Work by Malone (2012) and Sandler,
et al. (2010) are examples of two recent studies.
The primary goal of this chapter was to illustrate, using examples from childhood and
adolescence, the importance of becoming grounded in a developmental perspective. For
those who would like to continue reading in this area, I would recommend Corr and Balk’s
edited volume, Children’s Encounters with Death, Bereavement and Coping (2010); Balk
and Corr’s book, Adolescent Encounters with Death, Bereavement, and Coping (2009);
and a textbook, Death and Dying: Life and Living by C.A. Corr and D.M. Corr (2013).
Each of these resources further synthesizes various theoretical and research perspectives
relevant to your understanding of the interface of bereavement and the life stages of
childhood and adolescence.
157
Chapter 18
Life Span Issues and Loss, Grief, and

Mourning: Adulthood
David E. Balk
The probabilities for the experience of loss, grief, and mourning increase as a person ages.
A scan of worldwide mortality statistics (http://www.who.int/whosis/mort/en/index.
html; www.mortality-trends.org) discloses that longevity of life brings with it greater like-
lihood of multiple losses such as the deaths of parents, siblings, children, grandchildren,
and friends. For older adults, dealing with these losses becomes intertwined with prob-
lems endemic to aging: degradations in physiological operations, the onset of chronic and
debilitating illnesses, and diminished functional performance.
Loss, grief, and mourning during adulthood is the focus for this chapter. The topics
covered are (a) various schema for understanding responses to adult bereavement and
(b) the impacts of some deaths that adults grieve.
Overall Schema for Understanding Responses
to Bereavement in Adulthood
Four schema will be presented about ways to understand responses to bereavement in
adulthood: (1) a holistic appreciation of bereavement, (2) rhythms to the bereavement
trajectories that adults report, (3) life span development concepts, and (4) cognitive-
based coping models.
Schema 1: A Holistic Appreciation of Bereavement
Bereavement affects people behaviorally, cognitively, interpersonally, emotionally,
physically, and spiritually. Our understanding of life-span issues and bereavement would
be impoverished without this holistic template. Consider two examples: physical and
interpersonal consequences. Clinical evidence (Goodkin, Baldewicz, Blaney, et al., 2001;
Hall & Irwin, 2001) indisputably demonstrates that a physical response to bereavement is
a depressed immune system; coupling immune system difficulties following bereavement
to the normal degeneration of major human biological systems as one ages (Moss, Moss,
& Hansson, 2001) makes clear the impact that bereavement increases older adults’
vulnerability to opportunistic diseases. Another example comes from the interpersonal

realm. In an increasingly mobile, secularized society with an aging population, adults face
more and more the prospects of dealing with deaths less supported by loved ones than
other generations have experienced (Benoliel & Degner, 1995).
Schema 2: Rhythms to the Bereavement
Trajectories That Adults Report
Assertions that grieving occurs in psychological stages have been put to rest (Kastenbaum,
2001; Lund, Caserta, & Dimond, 1993). Bereavement trajectories form curvilinear paths,
extend indeterminately (Lehman, Lang, Wortman, & Sorenson, 1989), and among
adults involve basic groupings: a majority of persons who are resilient, a large plurality
that struggles but recovers, and a small minority whose grief goes unabated without
intervention (Bonanno, 2006; see also Bonanno, Wortman, Lehman, et al., 2002;
Bonanno, Wortman, & Neese, 2004).
Bereavement Trajectories1
The great surprise for many persons has been evidence regarding the resilience trajectory.
This trajectory marks at least a plurality if not the majority of bereaved individuals. In this
trajectory, people return fairly soon to regular functioning following the death of a loved
one.
Bonanno asserts that resilience is the most common human response to life crises,
even in such devastating events as the atomic bombing of Japanese cities. While resilient
people retain “at least a bit of wistful sadness” when bereaved, they quickly return to
living productive lives and to loving the persons around them (Bonanno, 2009, p. 8).
Bonanno’s championing of resilience can be found in some other major research efforts
aimed at uncovering the consequences of bereavement, in particular the work of Irwin
Sandler and his colleagues (Lin, et al., 2004). News of the resilience trajectory told us the
world of bereavement research was being mapped anew.
The second trajectory depicts what many of us have long accepted is true for persons
when bereaved. In this trajectory persons move only gradually from intense distress to
eventual recovery; it takes at least 2 years to regain one’s equilibrium when in this second
trajectory. People in this trajectory comprise about 40% of bereaved individuals. Bonanno
named this path a recovery trajectory. This trajectory depicts the experience I imagine
Freud and Bowlby had in mind when they wrote about grief work and four phases of
mourning.
What is not clear yet is whether Bonanno has data that explain (or at least describe)
how persons in the recovery trajectory actually do recover. Do they engage in confronting
distress, detaching from the deceased, and forming a mental representation of the
deceased? When these persons come to counselors for help, are they to be politely told
to go it on their own? This issue is of no small matter, as the debate over grief counseling
1 The material about bereavement trajectories appeared in Death Studies (Balk, 2011b).
Life Span Issues and Loss, Grief, and Mourning: Adulthood 159
has made clear. Bonanno, from what I can tell, considers counseling for persons in the
recovery trajectory to be a waste of time (Bonanno & Lilienfeld, 2008).
The third trajectory is what we recognize as complicated grief. People’s bereavement
overwhelms them, and unless they receive effective intervention, they remain in acute
grief for years. People in this trajectory “withdraw from the world and become mired in
an endless preoccupation, an insatiable desire to have the deceased person back again”
(Bonanno, 2009, pp. 96-97). People in this trajectory comprise 10-15% of bereaved
individuals. Bonanno called this path a chronic grief trajectory.
Bereavement Phases
While stages of grieving have fallen out of favor, phases ascribed to grieving, for instance,
the phases that Bowlby (1980, pp. 85-96) identified, have retained considerable staying
power in thanatology and have become a means for explicating changes over time in
adult bereavement. Steeves (2002) noted that Bowlby’s phases to grief readily demarcate
the narratives whereby adult grievers describe their experiences: numbness characterized
the initial few weeks, waves of sadness marked the next few months, and loneliness
emerged about the 6th month and lasted thereafter. Reorganization and reorientation,
the final phase in Bowlby’s phases, could not be found in the narratives. As Steeves
(2002, p. 7) put it, “The loneliness did not disappear but seemed to become merely
another ‘fact of life’”.
Using the idea of phases to understand the course of bereavement manifests the
human intent to construe meaning out of the chaos of bereavement and establish a
rhythm to the temporal processes of grief. Applying the idea of phases to bereavement
underscores that “bereavement is so obviously socially constructed” (Steeves, 2002, p.
5). What is clear is that an order can be applied to these narratives, one that disquietingly
ends with an enduring loneliness. Steeves suggested that the course of bereavement
typically lasts at most 9-12 months for elderly adults; most persons I know dispute that
the duration of bereavement is so short-lived. Perhaps Steeves followed his elderly
research participants only into the diminishment of their acute grief and the onset of
normal grief but did not interview them beyond the first year of their bereavement.
Impressive national data indicate that many years after their spouses’ deaths, widows
commonly had memories of and conversations about their spouses and occasionally
became sad and upset over reminders (Carnelley, Wortman, Bolger, & Burke, 2006);
what these researchers discovered about the long-term process of grieving a spouse’s
death suggests the loneliness Steeves reported does extend well past the first 2 years
of becoming a widow, but the national data also pointed to personal growth, such as,
increases in self-confidence and personal strength, following spousal bereavement. These
findings about personal growth are suggestive of reorganization and reorientation.
Schema 3: Life Span Development Concepts
For several decades researchers have studied human development from a perspective
that looks at how change over time describes the human lifecycle (Baltes, Reese, &
Nesselroade, 1977). One major contribution from the life span development perspective
has been a template provided both for understanding critical life events and for designing
interventions pertinent to them (Danish, 1977; Danish & D’Augelli, 1980). To wit, critical
life events exhibit several properties, among them, probability of occurrence, sequence,
and duration. To illustrate these life event properties, consider the death of a parent:
• There is high probability of the death for an aged parent, but low probability for a
young parent.
• In countries with highly developed and accessible medical care, the death of a parent
prior to the death of that parent’s child is considered to occur in sequence, whereas
the death of a child ahead of a parent’s death is out of sequence.
• Duration is much trickier as discrete events such as the death of a parent can have
temporal repercussions that resonate for months and years, but the notion of dura-
tion can be seen with these contrasting examples: the sudden death of a parent in a
car accident versus the lingering death of a parent to cancer following several years
of treatment, remission, and relapse.
Schema 4: Cognitive-Based Coping Models
Coping is now understood from a cognitive-based perspective. Cognitive-based means
that human coping involves comprehending implications, planning responses, and
evaluating outcomes. Further, events that require coping do not occur in isolation. As
Moos and Schaefer (1986) pointed out several years ago, life events are embedded in
three sorts of factors: (a) personal and background factors (for instance, one’s age, culture,
religious beliefs, gender, and previous experiences with loss), (b) event-related factors (for
instance, anticipated versus unexpected events, painful versus peaceful deaths), and (c)
socioenvironmental factors (for instance, social support systems, accessible health care).
Placed into the context of this chapter, consider young parents coping with the death of
a toddler:
• Religious beliefs may help the parents find meaning in what seems so inexplicable.
• Preparing for a child’s death due to an incurable terminal condition presents a differ-
ent scenario to finding a child died in her sleep.
• whereas some decades ago bereaved parents were basically overlooked, various sup-
port groups such as Compassionate Friends and The Candlelighters have emerged as
the product of concerned parents.
Empirical evidence demonstrates that aging does not reduce the ability to use
cognitive coping strategies but rather “older persons are increasingly effective in using
cognitive strategies in regulating their emotions” (Moss, Moss, & Hansson, 2001, p.
243). The coping models that have gained currency (for instance, Folkman, 1991, 2001;
Moos & Schaefer, 1986) emphasize adaptive tasks such as appraising the personal
significance of the event, identifying what the event demands, preserving a sense of
self-efficacy, reasonably maintaining emotional balance, and upholding interpersonal
relations. Empirical research has found “older bereaved persons more likely than younger
persons to have engaged in extensive account-making about their loss (searching for a
private meaning in the loss) and more likely to have confided these accounts to others”
(Moss, Moss, & Hansson, 2001, p. 243).
Impacts of Some Deaths Adults Grieve
In this section we will examine empirical evidence regarding three types of deaths that
adults experience: (a) the death of an elderly parent, (b) the death of a child, and (c)
the death of a spouse. While the death of an elderly sibling is one of the most likely
bereavement experiences for an older adult, little research or clinical attention has been
given to sibling bereavement during old age. Such a gap obviously needs to be filled.
The Death of an Elderly Parent
As adults see their elderly parents age and grow more frail, they naturally begin realizing
their parents’ deaths likely will happen, will occur in sequence (that is, before the deaths
of their children), and hopefully will take place without ongoing pain and suffering. Adult
children begin to prepare for the deaths of elderly parents and to see these deaths as
normative occurrences; it is disputed whether such anticipation mitigates the impact of the
loss. Let us look at two issues that empirical research has uncovered about bereavement
and the death of an elderly parent: (a) anticipating the death of an elderly parent and (b)
the impact of an elderly parent’s death upon the self of a middle-aged adult.
Anticipating the death of an elderly parent. The life span concept that events happen
either in sequence or out of sequence designates that in postindustrial societies children
are expected to out live their parents. Anticipating the death of an elderly parent emerges
as frailty becomes undeniable, as cognitive or physical functioning deteriorates, and/or as
chronic and debilitating diseases become more pronounced. Two of the more harrowing
deteriorations that persons witness as elderly parents age are the onset of senile
dementia or the descent into Alzheimer’s disease; the loss of the elderly parent under
these conditions seems to occur before death itself and aptly has been called ambiguous
(Boss, 1999). The strains of taking care of a frail elderly parent suffering from senile
dementia or Alzheimer’s include financial, emotional, and physical strains (to mention
three). For instance, emotional difficulties follow various paths for caregivers following
the death of a parent afflicted with Alzheimer’s—sorrow for some, clinical depression for
others, numbness for others, to cite three examples—and emotional distress increases
for caregivers who were already distressed prior to their parent’s death (Aneshensel,
Botticello, & Yamamoto-Mitani, 2004). Thankfully, senile dementia and Alzheimer’s
disease are not sure outcomes to aging.
As aging parents become old, their adult children begin to manifest adaptation
anxiety (Moss, Moss & Hansson, 2001). Some manifestations of adaptation anxiety
include worry over how to provide for parents at their very end of life, how to cope
with their parents’ actual dying, and how to manage life without their parents. Empirical
evidence is mixed about whether anticipating a death proves helpful to grievers: some
research concluded that following an elderly parent’s death adult children who reported
anticipatory grief were better adjusted than persons who did not experience anticipatory
grief (Smith, 2005); other research indicated that adaptation anxiety did not make coping
with an elderly parent’s death any less difficult (see Lund, 1989; Moss, Moss, & Hansson,
2001).
Clinical lore held for quite some time that anticipated deaths rather than sudden
deaths were easier on the griever; part of the reasoning was that an anticipated death
triggered a process called anticipatory mourning (Rando, 2000a, 2000b). The reality of
anticipatory mourning is disputed (Fulton, 2003), and empirical evidence has shown that
(a) over time spousal bereavement outcomes may be indistinguishable between sudden
and anticipated deaths (Gilliland & Fleming, 1998) and (b) severe psychological costs
may attach to an anticipated death that is difficult and drawn out over an extended time
(Da Pena, 2002; Diwan, Hougham, & Sachs, 2004; Gibson, Breitbart, & Tomarken, 2006;
Grunfeld, Coyle, Whelan, et al., 2004).
Impact of an elderly parent’s death on the self of a middle-aged adult. Event
characteristics influence the impact on the self of an elderly parent’s death. Typically
these deaths are expected and considered normative. Acceptance of an elderly parent’s
death can be confounded if the death involved protracted suffering (Moss, Moss, &
Hansson, 2001).However, complicated grief following an elderly parent’s death is rare
and—as uncovered in other research about traumatizing bereavement (Prigerson, Shear,
Bierhals, Pilkonis, Wolfson, Hall, Zonarich, & Reynolds, 1997)—has been associated with
anxious attachment bonds. Vaillant (1985), who followed 268 males from adolescence
into middle adulthood, concluded that long-term, deleterious effects following parental
death were best explained by the ambivalence associated with having been raised by
immature, conflicting, and mismatched parents. On the other hand, it needs to be
noted that Scharlach (1991) tested for and found no evidence that anxious attachment
accounted for unresolved adult grief following a parent’s death. In short, links between
attachment bonds, complicated grief, and bereavement over deaths of parents are not
settled.
Empirical research on a middle-aged adult’s sense of self-efficacy following bereave-
ment over spousal death (Benight, Flores, & Tashiro, 2001; Ford, 2006; Solomon & Draine,
1995) has indicated that, as one would expect, positive adjustments are directly associ-
ated with greater awareness of self-efficacy; these findings align quite well with cognitive
theories of coping discussed earlier (Folkman, 1991, 2001; Moos & Schaefer, 1986). Con-
siderable reassessment of life, renewal of purpose, and extensive reflection on identity and
human existence have been found in the lives of adult women following the deaths of their
parents (Westbook, 2002). Several authors have noted that the death of an elderly parent
accentuates for surviving children the sense of personal mortality (Doka, 1997; Douglas,
1990; Scharlach & Frediksen, 1993; Sherrell, Buckwalter, & Morhardt, 2001).
The Death of a Child
Through his in-depth ethnographic research Dennis Klass (1988) has disclosed in rich,
intimate detail the phenomena of parental grief as manifested in the lives of bereaved
parents who participated in self-help groups. A theme suffusing his research is that
bereaved parents redefine their sense of identity and their relationship to others because
of their experience of bereavement. For the majority if not all the parents Klass studied,
their dead child was an ongoing presence in their lives. While the impressive longitudinal
research that Silverman and Worden (1993), (Worden & Silverman, 1996) conducted
with bereaved children contributed to the acceptance of continuing bonds following
bereavement, it was primarily Klass who noted that bereaved adult parents, defying
judgments of clinical pathology, found solace in enduring attachments to their deceased
children. Klass (1999) argues that enduring attachments with their dead children sensitized
the adults to transcendence; the dead children served for the bereaved parents the same
function that saints and bodhisattvas provide in Catholicism and Buddhism (see also Goss
& Klass, 2005).
One thing we have learned from other research looking at bereavement involving
children and parents is the central role that consistent parenting plays in the long-term
adjustment of children following a death (Kirwin & Hamrin, 2005; Tein, Sandler, Ayers,
& Wolchik, 2006; Worden, 1996). As noted earlier, Vaillant’s extended longitudinal work
with 268 males showed the impact on unresolved grief and difficult life adjustments for
individuals raised by immature, conflicting, and mismatched parents.
An area of growing clinical and research interest involves the bereavement responses of
grandparents (DeFrain, Jakub, & Mendoza, 1991-1992; Gardner, Scherman, Efthimiadis,
& Shultz, 2004; Hayslip & White, 2008; Winston, 2006). Grandparents typically yield to
the grief of others (Moss, Moss, & Hansson, 2001); further, whereas bereaved parents’
attention centered on the dead child, bereaved grandparents’ attention focused on
the suffering of their own children—that is, on the parents of the dead child (Ponzetti,
1992). Grandparents’ own grief typically gets overlooked. Overlooking grandparent grief
illustrates a form of disenfranchisement (Doka, 1989). Ignoring the role of grandparents
in the lives of families during bereavement does not match the cultural experiences of
many groups of people—whether in the culturally rich amalgam that is the United States
or in the rest of the world. For instance, African-American grandmothers raising AIDS
orphans do so often at great personal cost, and their coping strategies include reliance on
deep religious faith (Winston, 2006).
Two forms of deaths of children are early pregnancy loss and sudden infant death
syndrome. We look first at early pregnancy loss.
Early pregnancy loss is one form of bereavement over death of a child that has been
overlooked on the whole. Epidemiologists report the rate of early pregnancy loss due to
miscarriage ranges between 14-20% (Hutti, 1992; Kilier, Geller, & Ritsher, 2002; Klein,
Stein, & Susser, 1989). The term miscarriage refers to the unintended, spontaneous end
of a pregnancy resulting in fetal death. We use the terms miscarriage and early pregnancy
loss interchangeably.
There is some variance in what clinicians and researchers accept as the duration of
pregnancies that end in miscarriages: 14-16 weeks gestation to as high as 26+ weeks
(Kilier, Geller, & Ritsher, 2002; Neugebauer, Kline, O’Connor, et al., 1992; Shapiro, 1988).
Time at which pregnancies end in recognized miscarriage is undergoing some downward
shifts as medical technology enables awareness of fetal life to be gained earlier than
previously possible (Cecil, 1994; Wilcox, Weinberg, O’Connor, et al., 1988).
The medical literature is replete with understanding of the physical complications
involved with miscarriage. These complications involve maternal and fetal risk factors (for
instance, polycystic ovaries and embryonic chromosomal abnormalities) (Mishell, 1993;
Rai, Backos, Rushworth, & Regan, 2000). Of singular importance for thanatologists is
that “studies concerning psychological distress in the aftermath of (an early pregnancy)
loss event are sparse” (Kilier, Geller, & Ritsher, 2002, p. 131).
Three categories of psychological distress following early pregnancy loss primarily
have been noted: depression, trauma, and grief. Various researchers have emphasized
the importance of depressive symptoms that fall below the level of clinical depression or
what is sometimes termed psychiatric caseness. As Kilier, Geller, & Ritsher (2002, p. 133)
wrote, “Failing to reach the threshold for caseness does not imply that an experience has
had no significant impact on the person’s subjective distress and social functioning.” The
prospect for major depressive disorder following miscarriage was found to be 2.5 times
greater than a community control group exhibited (Neugebauer, Kline, O’Connor, et al.,
1997), and episodes of minor depressive disorder were found in 5.2% of women who
had miscarried as compared to 1% in women in the community.
Anxiety is another psychological outcome noted less frequently but recently given
more attention; intrusive thoughts and images as well as traumatizing flashbacks are
major manifestations of anxiety and of yearning for what has been lost (Brier, 2004;
Neugebauer, Kline, O’Connor, et al., 1997). As Brier (2004, p. 14) noted, women
whose pregnancies have ended in miscarriage will find that intrusive thoughts that defy
control aggravate “the increased likelihood of reexperiencing symptoms of trauma (i.e.,
flashbacks, nightmares) which represent the person’s attempt to ‘take-in’ the stressful
elements of their pregnancy loss.”
Some persons propose a bereavement response of women whose pregnancy ends
unexpectedly in the premature birth of their infant (Charles, 2011; Kingma, personal
communication, March 3, 2011). The bereavement is said to stem from the loss of various
anticipated experiences such as a normal full-term pregnancy. Lamaze classes, baby
showers, holding the newborn upon delivery, leaving the hospital with your newborn,
and caring for an infant immediately from his or her birth. The health risks of the newborn
are also proposed as a source of the mother’s bereavement. Premature birth is asserted to
be both traumatic and grievous for the woman. Skepticism toward claims of bereavement
over premature birth start with bafflement over what seems a narrow, narcissistic focus
upon self that ignores both joy and relief that the baby is alive and concern for the baby’s
continued welfare. Proponents of bereavement due to premature birth invoke both
intangible losses and disenfranchised grief as umbrella concepts to address the skepticism
they have encountered.
Sudden infant death syndrome (SIDS) is another form of death that claims the lives
of young children. SIDS, the unexpected and abrupt death of an infant under 1 year of
age, is also called by such terms as cot death in the United Kingdom and crib death in the
United States (Deri-Bowen, 2001). The National SIDS/Infant Resource Center maintains
that SIDS kills more infants between 1 and 12 months of age than any other cause (see
http://www.sidscenter.org/SIDSFACT.HTM). The greatest incidence of such deaths occurs
between the infants’ 2nd and 4th months of life, with very few SIDS death occurring in
the 1st month of life. The death is associated with sleep and there are no signs that the
infant had a medical disorder. However, as of yet no definitive cause for SIDS as been
determined. Medical researchers are focusing on central nervous system defects that
control heart rate and breathing, on delayed brainstem maturation, on developmental
changes during the first 6 months of life that destabilize infants’ homeostatic controls, on
outside stressors such as becoming overheated, and on brain irregularities that may make
infants vulnerable to SIDS.
The sudden, unexpected death of a healthy infant poses a very difficult bereavement
for parents (as well as for siblings and grandparents). One of the first items noted in
research literature is that such a death violates assumptions about the natural, expected
order of events: Children are supposed to outlive their parents (Rando, 1993; Raphael,
1983; http://www.sidscenter.org/SIDSFACT.HTM). Schiffman (2004) reported three
prevalent emotional responses to a SIDS death were extreme guilt, anger, and blaming,
and confirmed that spouses’ communication and emotional support for one another
decreased following a SIDS incident.
Raphael’s (1983) elegant synthesis of the grief reactions to SIDS remains an excellent
source of information on parents’ reactions. She notes mothers’ and fathers’ grief
reactions show discrepant coping responses and dyssynchronous patterns of recovery.
“The mother tends to be more depressed, withdrawn, more disrupted by her loss. The
(father)….takes over protective, management functions, suppresses his feelings, deals
with his distress more quickly and cannot understand his wife’s continuing preoccupation
with (the death)” (Raphael, 1983, p. 260). Citing a study from the late 1970s, Raphael
wrote that it took on average a bit less than 4 months for the father to achieve normal
functioning but over 10 months for the mother.
According to Raphael, fathers’ responses to SIDS tend to be angrier and more
aggressive than mothers’. She wondered if the fathers’ apparently quick recovery of
normal functioning actually masked or camouflaged their intense feelings that they feel
very uneasy admitting or exploring. What may be occurring for fathers is what Cook
(1988) noted is the double-bind that grieving fathers experience when bereaved: Men
have been raised to understand that expressing strong negative emotions is to be kept
in check; stemming from this socialization about expression of strong negative emotions
is the dilemma in which grieving fathers find themselves: They are expected to comfort
their wives, and they are told healthy grieving requires disclosing the distress associated
with grief.
A typical coping response to a life crisis (see Moos, 1986) is to seek information
about what caused the calamity. “Parents try to find all the information they can about
the syndrome” (Raphael, 1983, p. 256), and in this search they are aided by the autopsy
and by the other procedures established to ascertain the facts in the case. The hunt for
information about SIDS leads parents to the frightening realization that medical research
does not know what causes infants to die from SIDS, and increases the parents’ dread that
they are powerless to prevent such a tragedy from happening again. It is as though caring
for their infant was futile, but such a realization does not assuage “the overwhelming
nature of parental guilt and blame” (Raphael, 1983, p. 258). It is clear why SIDS would
present a risk for complicated grief (Prigerson & Jacob, 2001).
The search for a cause, coupled with the overwhelming parental sense of guilt, can
militate against the parents being resources for one another as they cope with their loss.
As Moos and Schaefer (1986) noted, a key adaptive task in coping with a life crisis is to
maintain interpersonal relationships, but Raphael (1983, p. 259) reported some husbands
and wives become estranged as they look for what could have led to their baby’s death.
However, it would be wrong to leave the reader with the impression that marriages are
doomed following SIDS. Longitudinal research with 220 parents bereaved following SIDS
and other early childhood deaths learned that bereaved parents demonstrated positive
signs of healthy adjustment over time to the deaths of their children (Vance, Najman,
Thearle, Embelton, Foster, & Boyle,1995).
The Death of a Spouse
Widows comprise the great numbers of persons who have participated in bereavement
research and upon whom generalizations have been formed about loss, grief, and
mourning. In longitudinal research with widows, Parkes and his colleagues (Glick, Weiss,
& Parkes, 1974; Parkes, 1975; Parkes & Weiss, 1995) identified early signs of vulnerability
to spousal bereavement. These signs included lower socio-economic status, little time to
prepare for a spouse’s death, extensive and prolonged yearning for the dead husband,
and the coexistence of other stressors, including marital difficulties.
Differences have been noted in the bereavement of younger versus older spouses.
One difference involves autonomy and coping with the wider world. Due to feminism
and other liberating processes in secular societies, younger widows have been educated
and socialized to develop a repertoire of personal skills that succeed in the wider world;
however, Moss, Moss, and Hansson (2001, p. 246) noted, “…many older widows
(especially) who were raised in simpler times, in smaller and more tightly woven
communities, were not encouraged to learn the skills that would assist them in accessing
or developing new support relationships outside of the family.”
Many researchers have concluded social support provides a major influence on
adjustment to the death of a spouse (Impens, 2005; Larman, 2004; Silverman, 2004),
although Wolfgang Stroebe and his colleagues (Stroebe, Zech, Stroebe, & Abakoumkin,
2005; Stroebe, Stroebe, & Abakoumkin, 1999; Stroebe, Stroebe, Abakoumkin, & Schut,
1996) have raised several theoretical and empirical issues that question whether social
support plays a singular role in bereavement recovery: For instance, social support was of
greater benefit for widows when there were emotional attachments involved.
The intensity and duration of grief reactions of younger and older widows vary. For
instance, widows under the age of 41 report more depression than do older widows
(Larman, 2004). Applegate (1997) found younger widows more vulnerable to depression
if they perceived little support from others following their husbands’ deaths. Older
widows report significantly less depression, less anxiety, and better adjustment over time
than do younger widows (Zisook, Schuchter, Sledge, & Mulvihill, 1993).
The death of a spouse plunges many individuals, particularly females, into loneliness
because friendships with married couples become awkward without the partner that death
has taken (Lund, Caserta, & Dimond, 1993; Moss, Moss, & Hansson, 2001). However,
Pinquart (2003) reported there are many more buffers against loneliness for widows than
for widowers; one reason is contact bereaved women maintain with children, friends, and
siblings. Financial stressors were found to impede widowers in seeking social support;
widows with university education, particularly those women with a best female friend,
coped well following their husbands’ deaths (van Baarsen & van Grolmou, 2001).
Lindemann (1944) noted the physical symptoms of acute grief, among them chills,
fatigue, diarrhea, and constrictions in the throat. Longer-term health issues following
bereavement emerge directly from the suppression of the immune system, as mentioned
earlier. The landmark Institute of Medicine volume examining bereavement considered
bereavement poses a serious risk to physical health (Osterweis, Solomon, & Green,
1984). In his well-received book, Bereavement: Studies of Grief in Adult Life, Parkes
(1987) examined the increased risk for coronary thrombosis among the recently bereaved
(spouses, parents, grandparents) and noted two significant points: (a) young widows were
more susceptible than any other bereaved group and (b) it was not clearly understood what
led to increased mortality among persons who were bereaved. However, dysfunctional
behaviors used to deal with the distress of bereavement (for instance, smoking cigarettes,
drinking alcohol, abusing prescription drugs) as well as intense emotional reactions (for
instance, clinical depression and anxiety) place people at serious risk of physical health
problems, including mortality, and are much more likely contributing factors than is
bereavement by itself (see also Parkes & Brown, 1972).
Analysis of overall mortality statistics from numerous countries has confirmed that
the bereaved are significantly more likely than married persons to die from cirrhosis of
the liver, from suicide, from vehicular accidents, from diabetes, from lung cancer, from
heart disease, and from leukemia (Stroebe & Stroebe, 1993). The Stroebes (1993) noted
that mortality was highest among younger age bereaved groups and was more prevalent
among widowers than widows. These gender differences do not match what Parkes
(1987) found, but the age differences do fit his findings.
Endemic health problems of old age make bereavement one of many contributing
stressors that characterize challenges to the elderly: Examples include a series of chronic
debilitating illnesses such as emphysema and arthritis and osteoporosis, forced relocation
from one’s home, and declining mental capabilities due to senile dementia or Alzheimer’s.
While severe reactions to the death of a spouse have been linked to younger adults and
while the early response to spousal bereavement is more intense for younger adults,
the duration of emotional, behavioral, and physical bereavement symptoms last longer
among older adults (Moss, Moss, & Hansson, 2001). It is hypothesized that these age
differences signal the fact that spousal death is much less a surprise to older adults but
also that spousal death sets off an intertwined set of circumstances endemic to being old.
As a team of gerontology scholars noted, becoming a widow signals to elderly persons
that they have crossed the threshold into being old (Moss, Moss, & Hansson, 2001).
Prolonged dying from chronic, debilitating conditions presents “a new context of
dying” (Carr, 2008, p. 425) for adults and raises serious doubts about the applicability
of earlier research findings to the contemporary process and experience of adult spousal
bereavement. Carr (2008) reported that the strongest predictor of healthy psychological
adjustments for bereaved spouses following a prolonged dying “was most closely linked
to physical aspects of the death” (p. 429). Anxiety was found much more in surviving
spouses whose partner had died in considerable pain, and anger was found much more
in surviving spouses when medical negligence or incompetence seemed complicit in the
partner’s death. The dying spouse’s knowledge of and acceptance of impending death
and the surviving spouse’s acknowledgement that their partner had led a full life “did not
predict survivor’s psychological adjustment” (Carr, 2008, p. 429).
The basis for these conclusions from Carr about the sequelae of spousal bereavement
came from the study known as Changing Lives of Older Couples (CLOC), a comprehensive,
prospective study with a matched nonbereaved control group, “enabling comparisons
over the course of spousal loss” (de Vries, 2009, p. 680). The CLOC study provided data
leading to, among other things, conclusions about (a) bereavement trajectories (Bonanno
(2006, 2009), (b) changing realities in the experience of dying (Carr, 2008; Carr, Neese,
& Wortman, 2005), and (c) evidence for framing “interventions, policies, and practices to
assist older bereaved spouses” (de Vries, 2007, p. 680; see also Carr, Neese, & Wortman,
2005).
Summary Remarks
This chapter on life span issues and loss, grief, and mourning examined bereavement
during adulthood. Four schema were presented as ways to understand adult responses to
bereavement: (1) a holistic appreciation of bereavement, (2) rhythms to the bereavement
trajectories that adults report, (3) life span development concepts, and (4) cognitive-
based coping. Empirical evidence was presented regarding three types of deaths that
adults mourn: (a) the death of an elderly parent, (b) the death of a child, and (c) the death
of a spouse. An important theme to remember is that bereavement in older adulthood

is intertwined with problems characteristic of aging: degradations in physiological
operations, the onset of chronic and debilitating illnesses, and diminished functional
performance.
171
Chapter 19
The Family, Larger Systems, and Loss,

Grief, and Mourning
Alicia Skinner Cook
Death is a family event. It occurs within the context of existing relationships and family
dynamics. While grief is often viewed as a personal experience, it occurs in two realms
simultaneously—the intrapsychic level and the interpersonal level. Grief occurs in a social
context and is embedded in a web of complex relationships. In most societies, the clos-
est relationships and attachments are found in family systems. In some cultural contexts
the focus is on the nuclear family, while in others family is defined in broader terms and
includes a large network of extended family members for whom there is much interde-
pendence. In contemporary life, the definition of family has become increasingly complex
and may include stepparents and other steprelatives, both same-sex and opposite-sex
relationships in which partners cohabit but are not married, single-parent and multigen-
erational households, and a wide range of other family structures. With changing demo-
graphics, families will increasingly represent four and five generations as the average life
expectancy continues to increase (Galvin, Bylund, & Brommel, 2004).
Family Systems Theory
Each family is unique and is an entity that is greater than the sum of its individual family
members. According to family systems theory, families are characterized by wholeness or
unity. Central to this theory is the notion that one cannot understand individual behavior
in isolation, emphasizing the importance of understanding one’s responses in the context
of the social group(s) to which one belongs. While the experience of grief is a personal
event for individuals, it is also a systems event for families.
To understand any particular family system during the time of loss, one must look at
individual family members, their relationships to each other, and their relationships and
interactions with other individuals and systems outside the family. Family systems are
made up of subsystems illustrated by marital, sibling, and parent-child relationships. The
death of a family member can have a powerful impact not only on the family system but
also on the subsystem(s) of which that individual was a part (Cook & Oltjenbruns, 1998).
A death causes disequilibrium in the family system, often disrupting a family’s functioning
and affecting available emotional and physical resources. The death of a spouse may
alter the extended kinship network, the death of a child may alter perceptions of the
future, and the death of a parent or breadwinner can diminish a family’s sense of security
(Hansson, Berry, & Berry, 1999).
The effects of especially difficult losses can be transmitted through multiple gen-
erations. When secrecy and taboos surround a particular death, families can become
more vulnerable to future losses. Genograms are used as a technique for mapping family
structures and patterns of interaction (McGoldrick, 2011). They provide multiple types of
information about individual family members and relationships between family members
in both past and current generations. What is known and what is not known can each
yield useful insights. Missing information on cause of death for children in families, for
example, can suggest patterns of avoidance after a particularly painful loss and lack of
communication about death-related issues. Understanding multigenerational patterns of
interaction and communication around loss issues can lead to a better understanding of
current family functioning and coping styles.
Grief and the Family Lifecycle
According to Shapiro (1994), “a systemic developmental perspective on the family life
cycle crisis of bereavement suggests that the developmental course of all families is
inevitably altered by the shattering blow of grief” (p. 278). The timing of a loss in the
family lifecycle can be a critical factor in adjustment. Deaths that are untimely in terms of
chronological or social expectations are especially difficult. These untimely deaths include
early widowhood, early parent loss, and death of a child. Surviving family members may
know no individuals within their social networks who have coped with such untimely
events and thus have few models for effective coping and support. The death of a child
is one of the most painful losses a family can experience. Intense grief can extend over
a long period of time as parents try to make sense of a senseless event that defies the
natural order of life (McGoldrick & Walsh, 2005).
Timing of a loss can also coincide with other lifecycle changes that pose unique
challenges. For example, loss of a spouse can occur near the time of birth of the first child,
which is a major transition in itself, or at the time a family is coping with the financial
demands and launching issues of adolescents and college-age dependents. Multiple
stressors, developmental demands, and related losses can result in overload and influence
a family’s ability to cope (McGoldrick & Walsh, 2005). Furthermore, these losses have
the potential to affect both family relationships and individual development, particularly
with regard to the processes of separation and individuation (Cook & Oltjenbruns, 1998).
The Cultural Context of Loss
The experience of grief is affected by the environment in which it takes place. In particular,
the cultural milieu influences the manifestations of grief, opportunities for expression, and
The Family, Larger Systems, and Loss, Grief, and Mourning 173
interpretation of the loss. The community and the larger society also provide the context
in which family coping will occur. A family’s ethnic and religious values and traditions
influence the amount and type of support available to grieving families. Different cultures
also have different norms regarding the appropriate length of mourning, beliefs about
what happens after death, open displays of emotion, and gender roles (Anderson &
Sabatelli, 2007). For example, some traditions encourage outward display of emotion
while others reflect the belief that feelings are private and are not to be shown in public.
Societal expectations can also affect who is expected to grieve a loss and under what
circumstances. Disenfranchised grief is grief that exists even though society does not
recognize one’s need, right, or capacity to grieve (Doka, 2002). Pet loss is an example of a
significant family loss that oftentimes is not acknowledged by the larger society. Cultures
that are highly age-segregated may also deny children opportunities to grieve or say
goodbye to a dying loved one. In some cultures, children are an integral part of all family
rituals surrounding death, and in others they are rarely included.
Healthy Family Processes Following Loss
Beavers and Hampson (2003) have concluded that the ability to accept loss is at the core
of all processes in healthy family systems. Cook and Oltjenbruns (1998) along with other
authors have documented the importance of families sharing their loss, maintaining open
communication, reorganizing and regaining equilibrium, and effectively utilizing available
support systems and external resources.
Sharing the Loss
Funerals, memorial services, and other postdeath ceremonies can serve as meaningful
times of coming together of family members to acknowledge and share the loss of a loved
one. Imber-Black (2005) observes that every culture has rituals to mark profound losses,
acknowledge the life of the deceased, provide support for survivors, and facilitate ongoing
life after such loss. Following a loss, families begin a transition process as they cope with
their loss. Whether formal or informal, rituals can have therapeutic value following a loss
and facilitate emotional healing and family cohesion. Bosley and Cook’s (1993) study of
bereaved adults found that funeral rituals can be a tool to assist in accepting the reality
of the loss; serve as an affirmation of faith, religious beliefs, and/or a philosophy of life;
facilitate emotional expression and provide a context for emotional support from family,
friends, and the larger community; and to reconnect to a greater sense of family and the
integration of personal and family identity.
A ritual is a specific behavior or activity that gives symbolic expression to feelings and
thoughts. Actions occurring many months or years after a funeral, such as going through
the loved one’s personal belongings and taking off a wedding ring, can be considered
rituals and have important symbolic significance. Rituals following a loss also provide a
context for reminiscence to occur. Rosenblatt and Elde (1990) view shared reminiscence
about a deceased loved one as an important aspect of social support. They found in their
interviews with adults who had lost a parent that shared reminiscence was common,
particularly between siblings, and that it had positive implications for relationships with
surviving family members.
Maintaining Open Communication
According to Galvin, Bylund, & Brommel (2004), communication may be viewed
as a symbolic, transactional process of creating and sharing meaning. These symbols
include words, verbal behavior, and the full range of nonverbal behavior as well as facial
expressions, gestures, and spatial distance. The communications within the family are
transactional in that family members have an impact on each other. Individual family
members communicating within this interpersonal context often develop a shared reality
or set of meanings. Open communication both before and after a death allows family
members to share deep feelings and create stronger bonds, but family members must be
accepting and supportive of the range of feelings that may be expressed. Some types of
loss, such as death by suicide, may evoke strong feelings of anger and shame that may be
particularly difficult to share with others. Lack of open communication has been shown to
increase the possibility of blame, guilt, and conflict (Vess, Moreland, & Schwebel, 1985).
Reorganizing and Regaining Equilibrium
Death of a family member disrupts established patterns of interacting and requires an age-
appropriate redistribution of roles and responsibilities. An unanticipated loss may require
additional changes such as relocation, changing jobs, or seeking additional employment.
Open family systems in which information is freely exchanged with individuals both
inside and outside of the system tend to cope better with change. These families have the
adaptive capacity to reorganize in new and effective ways that support and acknowledge
individual family members while maintaining the functioning of the system as a whole.
In contrast, closed family systems tend to be rigid and locked into strictly prescribed
patterns. These families have difficulty accepting assistance from outside the system,
have few skills or experience with adaptive change, and have difficulty responding to the
demands following loss (Cook & Oltjenbruns, 1998).
Effectively Utilizing Support Systems and External Resources
Internal family resources are typically not enough to sustain a family following a traumatic
loss, and external systems can offer valuable support to bereaved families. These external
systems include extended family and friends, religious institutions, community and mental
health services, and formal support groups such as Compassionate Friends (for bereaved
parents). Religion and spirituality play a major role in the lives of many families, and
churches can often mobilize quickly after a death to offer assistance. Religious institutions
also provide time-honored rituals surrounding death that can provide comfort for families
and link them with others sharing their belief system (Cook & Dworkin, 1992).
Some families are more at risk than others for having inadequate external support.
For example, geographically mobile families may lack strong social networks and links
with their new communities and live considerable distance from close family and friends.
Other families may have rigid unspoken rules about “dealing with our own problems”
that prevent them from reaching out for additional support and professional assistance
when it is needed.
Coping: Family-Level Variables
While the study of resilience among individuals has been a focus of research for quite
some time, it has only recently been applied to the family as a system. Hawley and De-
Haan (1996) support the notion that resilience can be conceptualized at the family level
and reflects more than a collection of resiliencies of individual family members. Resilience
is demonstrated in response to adversity and allows the family and its individual members
to bounce back, thus reaching or surpassing a precrisis level of functioning. Resilience
is most likely to be found when protective factors are present and risk factors are mini-
mized. Hawley (2000) cautions, however, that resilience is not a static characteristic in
families and can be conceptualized as “a pathway a family follows over time in response
to a significant stressor or a series of stressors” (p. 106). Coming to terms with loss as a
family unit has no timetable. As the process unfolds, new stressors may appear, internal
and system strengths may be discovered, and thus the balance of protective and risk fac-
tors may be altered.
A number of protective factors within the context of family relationships have been
examined by researchers. For example, recent studies on bereaved children support the
efficacy of preventive interventions on strengthening parenting (Sandler, Wolchik, Ayers,
Tein, Coxe, & Chow, 2008). Haine and her colleagues (2006) found that positive parent-
ing served as a protective resource for bereaved children. Also, Lin et al. (2004) found that
children’s resilience was positively predicted by the surviving caregiver’s warmth and the
ability to provide consistent discipline. Traylor, Hayslip, Kaminski, & York (2003) studied the
association between adult grief and family system characteristics. Higher levels of family
affect and family cohesion were predictors of fewer manifestations of grief over time.
Risk factors for poor outcomes after loss include internal family factors (e.g., poor
communication, conflict in interpersonal relationships) as well as factors related to the
loss itself. Sometimes other concurrent stresses are also present that are unrelated to the
death such as loss of a job, caring for aging parents, or personal health problems.
Type of death also has implications for effective coping. Sudden, unexpected deaths
can be particularly difficult for families because they have no time to prepare for the loss.
Sudden deaths may also involve violence, such as in the case with homicide, and therefore
involvement with the criminal justice system. Furthermore, individuals experiencing
bereavement following violent death by accident, homicide, or suicide have been shown
to have difficulty making sense of the loss, and this failure to find meaning can lead to
complicated grief symptomatology (Currier, Holland, & Neimeyer, 2006).
In the case of an anticipated death, the challenges are different as families adjust to
the changing conditions associated with a particular illness. Families often spend extended
periods of time at a medical facility prior to the death of a loved one, interact with a
variety of health care providers, and may face complicated insurance and legal issues.
The stresses associated with extended illness, such as financial expenses, can exacerbate
already existing interpersonal issues within the family and accentuate tensions. From
the time a life-threatening illness is diagnosed, the dying person, together with family
members and friends, may begin to grieve. This anticipatory grief is related to the
many losses associated with the dying process as well as the impending death itself. An
anticipated death, however, does give loved ones the opportunity to say goodbye and
draw closure on a variety of concerns (Cook & Oltjenbruns, 1998).
Some illnesses, such as Alzheimer’s disease, involve ambiguous losses. In these
circumstances, the individual is physically present but perceived as psychologically absent
during the later stages of the illness as the person experiences more dramatic intellectual
and social decline (Boss, 1991). Watching these changes can be extremely painful for
family members who often have a sense of helplessness. Kapust (1982) has described
living with dementia as “an ongoing funeral” for the healthy spouse and other family
members.
Sudden loss can also involve ambiguity as is the case when the loved one is physically
absent but still psychologically present due to lack of confirmation of the death (Boss,
2006). Examples include natural disasters in which remains are not identified and soldiers
missing in action. Without proof of the death, family members often maintain hope that
their loved one is still alive. They frequently struggle with accepting the death, and the
timing of this acceptance may vary among family members. Some adults may become
preoccupied with the lost loved one and the search for evidence of the death, thus no
longer fulfilling their responsibilities to other family members.
Negative Outcomes
The experience of illness or death can bring family members closer together but it can
also cause significant discord. Based on their research findings, Dyregrov and Dyregrov
(2008) stated that many couples report increased closeness after a loss while a large
number report growing apart; few report that the relationship remained the same. Each
individual family member’s grief is unique and based on relationship with the deceased,
developmental level of the griever, personality and coping skills, prior losses, and a host
of other factors discussed elsewhere in this volume. The manifestations and duration of
grief of one family member may be quite different than that of another family member.
This variability is referred to as dissynchrony of grief.
In a similar manner, family members may use different coping mechanisms or discrepant
coping styles to deal with their loss. Some family members may prefer to grieve in private
while others find solace in talking frequently about their loss and openly expressing their
emotions. In particular, gender differences can influence the manifestations and style
of grieving. Men are more likely than women to avoid grieving situations and use work
as a distraction. Distraction can also take a form that is detrimental to the individual’s
health, such as excessive drinking (Umberson, Wortman, & Kessler, 1992). When grief
is expressed, men tend to show anger more than do women (Gilbert & Smart, 1992). In
studying couples who had experienced either a fetal or infant death, Gilbert (1989) found
that the majority of couples experienced marital discord following the loss. According
to the researcher “inconsistencies in beliefs and expectations resulting in a perception
of incongruent grieving served as the major contributors to most of these conflicts”
(p. 609). These differences in grieving and ways of coping can result in a perceived
secondary loss as a result of a change in the predeath relationship.
Unhealthy patterns may also develop as the family reorganizes to meet roles and
responsibilities involved in daily living. Parents may be so absorbed in their individual
grief following loss of a child that they are unable to reach out to each other or to provide
emotional support for their remaining children. In these instances, a surviving child may
become parentified and be the one to attempt to care for all other family members, thus
compromising his or her own development.
Positive Outcomes of Coping with Loss
Little attention has been given to the positive outcomes of grief. Despite the pain
associated with loss, families often report finding meaning in their suffering. Nadeau
(2008) in her work on meaning making in families found many families report positive
changes following a loss. This growth is often expressed as truths realized or lessons
learned.
Positive outcomes can also relate to changed self-perceptions of individual family
members such as seeing oneself as stronger and more mature. Three quarters of widowed
persons in the Changing Lives of Older Couples study reported that they had become
more self-confident as a result of having to manage on their own since losing a spouse
(Utz, 2006). Other outcomes relate to changes in interactions with others such as more
caring for others, enhanced communication skills, and more openness in sharing feelings
(Calhoun & Tedeschi, 1990).
In their interviews with parents 1 to 8 years after the death of a child, Brabant,
Forsyth, and McFarlain (1997) found that the majority expressed a fundamental change
in themselves, feeling more sensitive and more spiritual as a result of their loss, and also
perceiving themselves to be better persons. Most also expressed a change in values,
including a desire to help others more and placing a higher priority on family and less on
money and work.
Klass (1986) has observed that death creates new bonds in some families as individual
members pull together to cope with their shared loss. Surviving a common loss as a family
can result in a renewed sense of closeness and cohesion, a better understanding of each
other’s strengths, and enhanced communication and flexibility.
Summary
Grief typically takes place in the context of a family. While much attention has been
paid to individual grief, understanding the impact of death at the family system level is
also important. The family often provides the context for healing and variables such as
stage of family lifecycle, patterns of family interaction, differences in grief manifestations

of individual members, and cultural context will all influence the process. The following
healthy family processes after a loss have been identified: sharing the loss, maintaining
open communication, reorganizing and regaining equilibrium, and effectively utilizing
support systems and external resources. Resilience among grieving families is found more
often when risk factors are minimized and protective factors are present. While a variety
of factors can lead to negative outcomes of grief in families, many families report positive
outcomes as a result of their shared grieving.
179
Chapter 20
Ethical and Legal Issues and Loss,

Grief, and Mourning
David K. Meagher
There are many ethical and legal issues that are often overlooked when confronted with
the death of a loved one. Legal issues affected by death include ownership of the remains
of the deceased, the decision for conducting an autopsy, the distribution of the deceased’s
property (execution and probate of the will), implementing plans for the disposal of the
body, qualifications of grief support personnel, and the inclusion of bereavement leave
within the legal structure of society. However, as Shah and Miller (2010) write, for the
most part, “legal consequences of death do not require determining the moment of
death with precision. None of these consequences depend on determining death within a
matter of minutes or seconds. It is only when death became a prerequisite for vital organ
donation that it began to matter exactly when a person died” (p. 542).
Determination of Death
In the past, physicians were limited in their ability to determine the moment of death. The
available technology limited the physician to the senses of touch (pulse), vision (movement
caused by respiration), and hearing (using a stethoscope). Death was declared when
breathing and heartbeat were said to have ceased. In more recent times we have seen
a gradual movement to more technologically arrived at decisions about the declaration
of death. Both the reports of the Harvard Ad Hoc Committee on Brain Death Syndrome
(1968) and the President’s Commission for the Study of Ethical Problems in Medicine
and Behavioral Research (1981) recommended a set of criteria that may be employed
by physicians in the determination of the onset of death in accordance with available
medical knowledge and technology. From these reports, the denotation of a patient with
brain death has become equated legally to the actual death of a person by U.S. state
legislatures and has been upheld by the courts (Rosenberg, 2009).
Death by brain criteria is a clinical diagnosis that can be made when a decision has
been reached that there is complete and irreversible cessation of all brain function. Since
it is now technically possible to sustain cardiac, circulatory, respiratory and other organ
function after the brain has ceased to be alive, a diagnosis of death by brain criteria can
be made before the heart beat stops (Phillips, 2005).
However, there is an ongoing debate over the determination of death, particularly
over brain death or death determined using neurological criteria, and the relationship
between definitions of death and organ transplantation (Smith & Cherry, 2010). Khushf
(2010) suggests that the policy for the declaration of death and the harvesting of organs
are intertwined. In the United States, there is a dead donor rule (DDR) that makes it
necessary to first determine that death has occurred (Smith and Cherry, 2010). “From
a legal point of view, not having scientifically valid criteria of cessation of circulation
and respiration for declaring death could lead to the conclusion that organ procurement
itself is the proximate cause of death. Although the revised Uniform Anatomical Gift
Act (UAGA) of 2006 provides broad immunity to those involved in organ-procurement,
courts have yet to provide an opinion on whether persons can be held liable for injuries
arising from the determination of death” (Verheijde, Rady, & McGregor, 2009, p. 15).
Is it even necessary to declare a patient has died? Miller, Truog, & Brock (2010) write
that “transplantation of vital organs has been premised ethically and legally on the dead
donor rule (DDR), the requirement that donors are determined to be dead before these
organs are procured. Nevertheless, scholars have argued cogently that donors of vital
organs, including those diagnosed as ‘brain dead’ and those declared dead according
to cardiopulmonary criteria, are not in fact dead at the time that vital organs are being
procured….We challenge the normative rationale for the DDR by rejecting the underlying
premise that it is necessarily wrong for physicians to cause the death of patients and
the claim that abandoning this rule would exploit vulnerable patients. We contend that
it is ethical to procure vital organs from living patients sustained on life support prior
to treatment withdrawal, provided that there is valid consent for both withdrawing
treatment and organ donation. However, the conservatism of medical ethics and practical
concerns make it doubtful that the DDR will be abandoned in the near future. This leaves
the current practice of organ transplantation based on the ‘moral fiction’ that donors are
dead when vital organs are procured” (p. 299).
Allowing temporary organ-preservation (TOP) without expressed consent of the pa-
tient and/or family is inherently a violation of the principle of respect for one’s autonomy
(Verheijde, Rady, & McGregor, 2009). Opponents are of the opinion that the UAGA
provides the legal authority for TOP while attempts are made to ascertain the wishes of
the patient and/or family. TOP, they state, does not violate any legal family interest and
protects practitioners and hospitals from any legal liability associated with the procedure
(Bonnie, Wright, & Dineen, 2008).
In summary, we accept the physician’s decision as absolute and valid. The physician,
in this case, is acting both as a medical practitioner and as an agent of the state. The
declaration of death is first a medical decision. Even if a person, though appearing to
be dead, was still alive, the decision that a patient has died will most likely be a valid
Ethical and Legal Issues and Loss, Grief, and Mourning 181
one since all interventions cease at the moment a physician declares the person dead.
Secondly, this declaration is also a legal one. Once a person is declared dead, a death
certificate having been signed to validate the decision, the deceased no longer enjoys
the rights and privileges enjoyed before death. The Declaration of Independence, the
foundation of the laws of the United States, declared that all are endowed with certain
unalienable rights which included the right to life. Each person has a right to his or her
life. Each of us is given a life, and it is naturally our own. All legislation subsequent to
the Declaration of Independence was enacted, at least in theory, to protect the rights
of all members of society. Of course, the laws only protect those living members of a
society. Do the deceased have any rights or protections under the law? If not, who, then,
possesses the right to act in the name of the deceased? Who owns the body? What rights
of the deceased, if any, may this person protect?
Many of the authors of the U.S. Constitution believed that the “right to property”
was a kind of summary right; in it were contained all the other rights (Rendell, 2004).
The remains of a decedent do not qualify in the ordinary sense as property. A surviving
spouse or next of kin does not have a right of ownership over the corpse. However, in the
absence of any contrary documents, a surviving spouse or next of kin does have the right
to the possession of the body for the purpose of burial or other lawful disposition which
they may see fit. The questions of ownership and protection of rights to one’s body are
particularly important when it comes to the issue of organ and tissue donation.
Organ Donation Debate
Advances in organ transplantation technology and successes of immunosuppressant
techniques have resulted in giving a new lease on life to critically ill patients. However, the
number of patients waiting for a donor organ far exceeds the number of available donors.
By some estimates, 92,000 Americans are waiting for an organ donation, with a name
added to the list every 16 minutes. Twelve Americans die every day because a needed
vital organ is not available (Harris & Alcorn, 2001). Worldwide numbers of persons wait-
ing for an organ are difficult to ascertain, The Eurotransplant International Foundation
(2011) reports approximately 16,000 potential recipients. The Wikipedia Encyclopedia
(2006) reports there are more than 2 million patients in China, 50,000 in Latin American
countries, and 2,000 in Australia and New Zealand on waiting lists for organs. The need
is great; the resources to meet this need are extremely deficient. In the United States,
UAGA expressly grants the right to the next of kin to control disposal of the body, in
conformity with the common law. The UAGA is a model set of laws regarding a person’s
gift of his or her body parts after death and has been adopted by most of the U.S. states.
It includes provisions that govern how individuals can give their bodies to medical schools
and hospitals for various purposes and also has provisions that allow family members to
make those decisions. The gift of body parts by an individual or next of kin may not be
made if there are indications to the contrary within those who, by law, have a right to be
involved in the decision.
Some general components of the UAGA are:

1. No witnesses are required on the document of gift, and consent of next of kin
after death is not required if the donor has made an anatomical gift.
2. A gift of one organ does not mean there is a limitation on the gift of other organs
after death if there has not been any contrary indication by the decedent.
3. An individual must be at least 18 years of age to be a donor.
4. For the wishes of a deceased to be a donor, document of gift signed by the donor
is necessary. If the donor cannot sign, the document may be signed by another
individual with two witnesses, all of whom have signed at the direction and in
the presence of the donor.
5. If a document of gift is attached to or imprinted on a donor’s motor vehicle
operator’s license, revocation, suspension, expiration, or cancellation of the
license does not invalidate the anatomical gift.
6. A document of gift may designate a particular physician or surgeon to carry out
the appropriate procedures.
7. Donation does not require waiting for a will to be probated.
8. A donor may amend or revoke an anatomical gift by: a signed statement, an oral
statement made in the presence of two individuals, or any form of communication
during a terminal illness or injury.
9. A stated wish to be a donor that is not revoked by the donor before death is
irrevocable and does not require the consent or concurrence of any person after
the donor’s death.
10. In a priority listing, the spouse, adult child, either parent, adult sibling, a
grandparent, guardian of the decedent, or any other person authorized or under
obligation to dispose of the body may make an anatomical gift of all or a part of
the decedent’s body for an authorized purpose, unless the decedent, at the time
of death, has made an unrevoked refusal to make that anatomical gift.
11. If a person proposing to make an anatomical gift knows of an objection to making
an anatomical gift by any member of the above-authorized list, the donation
may not be made until the objection has been resolved.
Opt-in vs. Opt-out Models
In the United States, the basic structure created by the National Organ Transplant Act
(NOTA) of 1984 includes a system of voluntary altruistic donations or also known as an
opt-in model (Cutler, 2002). An alternative method is an opt-out model or one known as
presumed consent.
The opt-in model is one that depends on having the expressed consent of a donor
and/or obtaining the consent of the family after the death of a patient.
In England and Canada, Human Tissue Gift Acts are examples of an opt-in practice.
In most situations in both countries, any adult person can consent to be an organ or tissue
donor in writing at any time or orally if in the presence of at least two witnesses during
the person’s last illness. When a person has not given consent under these circumstances,
or if in the opinion of a physician, one is incapable of giving a consent by reason of injury

or disease and his or her death is imminent, the patient’s next-of-kin or the person who
is lawfully in possession of the body, may consent on the behalf of the deceased. In any
case, consent cannot be given if there is reason to believe that the deceased would have
objected (Sperling, 2004).
In contrast, Spain, Israel, and Singapore are examples of countries that have established
an opt-out or presumed consent model, which assumes the presence of consent where
there is no clear indication that consent has been withdrawn (Voo, Campbell, & de Castro,
2009).
Financial Incentive Donations
A commonly debated alternative system is one that provides a financial benefit incentive
for donation. This system would allow for survivor families to receive some financial benefit
as a result of the donation. Benefits might include monies to offset funeral expenses or be
charitable donations to qualified nonprofit charities in memory of the deceased (Cutler,
2002). Neither UAGA nor NOTA permit the provision of any financial benefit to the
organ donor or families and there are no data to suggest a financial incentive system
would increase or decrease the number of donations.
Voo, Campbell, and de Castro (2009) address some significant ethical issues with
presumed consent. One issue questions whether making the potential donors responsible
to indicate their unwillingness to participate disrespects an individual’s right to self-
determination. For some, the benefit of saving lives outweighs any consideration of
autonomy violations.
A second ethical concern for Voo, Campbell, and de Castro (2009) is the role of an
impact on the family in the presumed consent model.
Survivor-Family Response to Request
Family members or others responsible for making donation decisions have reported
confusion and uncertainty around the moment of the request. Cleiren and Van Zoelen
(2002) report that many family members report not knowing or remembering what tests
were used to declare their loved one dead. They seemed unaware what questions about
brain death to ask a physician. Most did not know that, if the loved one was to be a
donor, the body had to be artificially respirated. For some bereaved family members, they
contend that no information about brain death was provided, and they cannot recall the
moment when consent for donation was obtained. In only a small percentage of cases
were donations discussed preceding the death. Family members felt superfluous and
ignored afterward. The desire to be informed about the results of the transplanted organs
was strong in almost all bereaved (Burroughs, Hong, Kappel, & Freedman, 1998). Some
were frustrated that they did not receive information from the transplant coordinator,
although this information had been promised. Sque, Long, & Payne (2005) report that
the perceived quality of hospital care affected families’ donation decision making and
appeared to impact on their subsequent grief. Families needed (1) time to understand the
information given, (2) care in the way and context that information was shared, and (3)
attention to their emotional needs (Dinhofer, 2003).
The National Kidney Foundation (2002), along with a number of other professional
organizations working with families of organ donors, has developed a set of care
expectations these families have a right to expect. Known as the Bill of Rights of Donor
Families, its purpose is to provide members of Organ Procurement Organizations (OPO)
and other related associations with a list of services that they should be offering to
donor families. Among other recommendations, included in this statement of rights,
are a number of actions that are designed to assist the family members with both their
decisions and their grief. They are: (1) assuring that their loved one will be treated
with respect throughout the process, (2) providing timely information regarding how
any donated organs and/or tissues were used upon request and whenever possible,
(3) if family members wish, giving an opportunity to exchange communications with
individual recipients and/or recipient family members, (4) providing accurate updates
on the condition of the recipients if families so request, and (5) providing ongoing
bereavement followup support for a reasonable period of time. Included in such support
are the provision of: the name, address, and telephone number of a knowledgeable
and sensitive person with whom they can discuss the entire experience; free copies of
literature about organ and tissue donation; free copies of literature about bereavement,
grief, and mourning; opportunities for contact with another donor family; opportunities
to take part in a donor or bereavement support group and/or the services of a skilled and
sensitive support person (National Kidney Foundation, 2002).
In an effort to prevent grief from turning into distress, many countries have enacted
what are know as presumed consent laws. These laws allow transplant coordinators to
approach families in an attempt to ascertain the deceased’s wishes concerning donation
or to seek permission from the families if the wishes are unknown. The most common
reason for missed opportunities is the denial of consent by the family. Since the issue
of consent regarding giving away one’s organs after death implies ownership, family
members cannot give away something they do not first own, any more than they can sell
it (Cutler, 2002). Voo, Campbell, & de Castro (2009) conclude that presumed consent
legislation has not improved the rate of organ donations even in countries with such
legislation.
Legal issues of ownership of the deceased’s body are not only a component of the
organ donation debate. It is also part of the decisions concerning what happens to the
deceased’s remains. There are legal and ethical issues to consider. The first concerns the
needs of the state.
Autopsies
An autopsy may be required in deaths that have medical and legal issues and must be
investigated by the medical examiner’s or coroner’s office. Deaths that must be reported
to and investigated by these officials include those that have occurred:
1. Suddenly or unexpectedly, including sudden natural death, sudden infant death

syndrome, or the death of a person who was not under the care of a doctor at
the time of death
2. As a result of any type of injury, including suicide, homicide, a motor vehicle
accident, drug overdose, or poisoning
3. Under suspicious circumstances
4. Under other circumstances defined by law
When an autopsy is required, the coroner or medical examiner has the legal authority
to order an autopsy without the consent of the deceased person’s family or next of kin.
If an autopsy is not required by law, it cannot be performed until the deceased person’s
family provides permission.
The decision about an autopsy occurs at a difficult time for most families since
they have just lost a loved one. Counselors or members of the clergy who specialize in
bereavement services may be available to help families through the process. In cases in
which an autopsy is not required by law, family members may consider requesting one:
1. When a medical condition has not been previously diagnosed
2. If there are questions about an unexpected death that appears due to natural
causes
3. If there are genetic diseases or conditions that they also may be at risk for
developing
4. When the death occurs unexpectedly during medical, dental, surgical, or obstetric
procedures
5. When the cause of death could affect insurance settlements or legal matters
6. When the death occurs during experimental treatment
When the medical examiner or coroner decides there is a need for an autopsy to be
performed and there is a cultural or religious tenet against autopsies, the law supersedes
culture and religion. However, it should be expected that, in these cases, any invasion
of the body be minimal and that all tissues and organs that have been removed for
examination be replaced after the procedure is complete, thus maintaining the bodily
integrity required by religious or cultural practice (Klaiman, 2005). The next question to
be answered is, What are the legal ways to dispose of the remains of the deceased?
Body Disposal and the Law
In addition to allowing the deceased’s body to be harvested for usable tissue and organs
in a transplantation program or for medical research, there are three other lawful means
of disposing the remains of a loved one who has died: burial, cryonics, or cremation. The
most common means of disposal is the burial of the body following a funeral or memorial
service. Funerals provide an important rite of passage. Similar to rituals that mark other
transitions in life, funerals provide a time for family and friends to celebrate the life of the
loved one and share their feelings concerning the loss of this person in their lives. Coming
together like this provides a satisfactory environment for mourning and expressing grief.
In addition, funerals are important rituals for the survivors. They affirm one’s basic beliefs
about life and death and help one through the loss.
Funerary customs comprise the complex beliefs and practices used by a culture to
remember the dead, from the funeral itself, to various monuments, prayers, and rituals
undertaken in their honor. These customs vary widely between cultures and between
religious affiliations within cultures. A question that is often asked is, If a ritual is going
to include an open casket viewing, must the body be embalmed? There is no federal law
that requires that a body be embalmed prior to burial. In fact, the Centers for Disease
Control (CDC) says no public health purpose is served by embalming (Hoyert, 2001). In
addition, no state routinely requires embalming. A few states do have laws that require
embalming generally:
1. When death occurs from a disease that may put funeral personnel at risk;
2. If the body will be transported by public transportation;
3. If the final disposition will not be accomplished within 72 hours after the death;
4. If the body will be publicly viewed; and
5. If so ordered by the commissioner of health for the protection of the public
health (Funeral Consumer Alliance (FCA), 2006).
A supporting rationale for embalming states that it is primarily done to disinfect
and preserve the remains. FCA (2006) counters this rationale with the policy that the
process does not preserve the body forever; it merely delays the forces of nature. A
second supporting position is that without embalming, an open casket viewing would be
impossible. The body would become unviewable within a short time. Refrigeration of the
body during nonvisitation periods would accomplish the same result as embalming if the
viewing period is not too long. The United States is the only country in which embalming
has been widely promoted by the funeral industry. It is rarely done in other countries,
with no risk to public health. Even visitations are held in those countries without having
the body embalmed first (FCA, 2006).
Funerals rank among the most expensive purchases many consumers will ever make.
A traditional funeral, including a casket and a vault, may cost $6,000 or more. This
expense does not include cemetery costs such as purchase of a grave and labor cost
incurred at the time of the burial. Extras like flowers, obituary notices, acknowledgment
cards or limousines can add thousands of dollars to the bottom line. The cost of many
funerals is more than $10,000.
To protect the purchasers of funeral products and services, the U.S. Federal Trade
Commission (FTC) (1994) enforces a set of regulations known as the Funeral Rule.
According to the Funeral Rule:
1. One has the right to choose the funeral goods and services he or she wants for
themselves or for someone he or she represents.
2. The funeral provider must state this right in writing on the general price list.
3. If state or local law requires a person to buy any particular item, the funeral
provider must disclose it on the price list, with a reference to the specific law.
4. The funeral provider may not refuse, or charge a fee, to handle a casket someone
has purchased elsewhere.
5. A funeral provider that offers cremations must make alternative containers
available.
Each year, Americans grapple with these and many other questions as they spend
billions of dollars arranging more than 2 million funerals for family members and friends.
The increasing trend toward preneed planning—when people make funeral arrangements
in advance—suggests that many consumers want to compare prices and services so that
ultimately, the funeral reflects a wise and well-informed purchasing decision, as well as a
meaningful one.
With the exclusion of Alabama, which is the only state without any preneed laws, all
states have some preneed legislation. However, each and every state’s preneed laws are
significantly different. Some states require 100% of preneed funds to be placed in trust.
Other states merely require the holder of funds to maintain a custodial relationship. Some
states require an annual report to be prepared by a certified public accountant. Other
states don’t require any annual report (FTC, 1994).
After the funeral ritual, a burial service is generally conducted at the side of the
grave, tomb, mausoleum, or crematorium, at which the body of the decedent is buried
or cremated at the conclusion. According to most religions, coffins are kept closed during
the burial ceremony. In Eastern Orthodox funerals, the coffins are reopened just before
burial to allow loved ones to look at the deceased one last time and give their final
farewells.
In most areas of the country, state or local laws do not require the purchase of a
container to surround the casket in the grave. However, many cemeteries require such a
container to prevent depressions of a grave. Either a grave liner or a burial vault will be
required.
Many families choose cremation as a way to either reduce costs or preserve the
environment. Cremation is significantly less expensive than traditional burial rituals.
In addition, there are those who believe the land designated as a cemetery could be
designated as protected open spaces in a densely inhabited environment. There are a
variety of options available to dispose of cremation remains: interment in a family grave,
placement in a columbarium, or being kept by the family in the home, to cite some
examples. Another choice may be a ritual scattering of the remains over land or water.
More recently, cremated remains have been placed in space crafts and sent into orbit.
This choice, though, is much more expensive than a traditional funeral and burial ritual.
The U.S. Environmental Protection Agency (EPA) allows for burial at sea of cremated
remains. The burial may be by boat or plane and must occur at least 3 nautical miles from
land, and each burial of cremated remains be reported to the EPA. At sea includes inland
navigable water, but excludes lakes and streams. Scattering cremated remains from a
bridge or pier is prohibited under federal law. Cremated remains must be removed from
the container or urn before scattering.
A futuristic alternative option may be cryonics. Cryonics is the practice of preserving

(freezing) humans or animals that can no longer be sustained by contemporary medicine
until resuscitation may be possible in the future. The process is not currently reversible,
and by law can only be performed on humans after legal death in anticipation that the
early stages of clinical death may be reversible in the future. Cryonics is based on a view
of dying as a process that can be stopped in the minutes, and perhaps hours, following
clinical death. If death is not an event that happens suddenly when the heart stops, we
face philosophical questions about what exactly death is. Some have noted “…few if any
patients pronounced dead by today’s physicians are in fact truly dead by any scientifically
rigorous criteria” (Whetstine, Streat, Darwin & Crippen, 2005, p. 540). Donaldson (1988)
has argued that death based on cardiac arrest or resuscitation failure is a purely social
construction used to justify terminating care of dying patients.
Ethical and theological opinions of cryonics tend to pivot on the issue of whether
cryonics is regarded as interment or medicine. If cryonics is interment, then religious
beliefs about death and afterlife come into consideration. Resuscitation is generally
deemed impossible because the soul is gone, and according to most religions only God
can resurrect the dead. Expensive interment is seen as a waste of resources. If cryonics is
regarded as medicine, with legal death as a mere enabling mechanism, then cryonics is
a long-term coma with uncertain prognosis. It is continuing to care for sick people when
others have given up, and a legitimate use of resources to sustain human life (Whetstine
et al., 2005).
Grief: A Normal or Pathological Response
Kleinman (2012) describes grief as a normal response to a loss of something truly vital in
one’s life. The loss results in an end to a form of living. It requires a transition to a new
time and a different way of living. He writes that there is no conclusive evidence to show
what a normal length of bereavement is. Diagnosing a response as a major depressive
disorder (MDD) is unreliable and potentially harmful to grieving persons. There is a
significant difference between what may be described as a normal reaction to loss and
that which some bereaved individuals who over time manifest symptoms found in MDD.
Balk, Cupit, Sandler, and Werth (2011) identify some potential problems for a
diagnosis of depression in the first 2 months of bereavement. Firstly, they state that
labeling grief as a major mental disorder may have an iatrogenic effect on bereaved
persons. Secondly, people with disordered grief might be mistakenly treated for major
depression. Given that the appropriate treatment for depression and prolonged grief
disorder differ, the diagnosis of depression may lead to an inappropriate treatment and
interfere with the person’s coping with the distress of bereavement. Lastly, they posit that
if diagnosed with a MDD within the first 2 months of bereavement, it is likely that many
individuals will receive antidepressant medication that has potential negative side effects.
Bereavement Leave
Often, the acuteness of the grief experience makes it very difficult for the bereft to
fulfill normal daily activities, such as meeting one’s occupational responsibilities (Rando,
2000b). Having the opportunity to take a paid leave from work (bereavement leave) so
that one would be able to focus on the felt grief and help others in the family cope would
be a very positive support. However, in the United States. there is no automatic right to
time off with pay in instances of bereavement of a relative or friend. Any time off with
pay is either stated in the company’s terms and conditions of employment or decided
by the employer at his or her discretion. The Employment Relations Act 1999 does give
employees the right to time off without pay, in the event of the death of a dependent. In
the legislation, a dependent is defined as a spouse, child, parent, or a person who lives in
the same household as the employee other than a tenant, lodger or boarder.
While the U.S. Family and Medical Leave Act provides for 12 weeks of unpaid leave
for someone who is caring for a dying family member, the act does not include provisions
for bereavement leave. Federal civil service workers, however, may use up to 104 hours
(13 days) to make arrangements necessitated by the death of a family member or to
attend the funeral of a family member.
Paid bereavement leave is a more common practice in other countries. Specific
provisions for a paid bereavement leave are included in part III of the Canada Labour
Code. It states that an employee who has been continuously employed in a company
for at least 3 consecutive months is entitled to “leave on any normal working day that
falls within the 3-day period immediately following the day the death occurred.” If the
employee has not been employed for the 3-month period, he or she is entitled to the
3-day leave without pay.
A sampling of other countries reveals the following paid leave opportunities:
A. 3, 6, or 8 days in Taiwan depending on the relationship with the deceased;
B. 7 days in Chile;
C. 3 days in China and Luxembourg; and
D. 2 days in Spain.
Ethical-Legal Issue of Research
“The field of bereavement research has lagged behind the disciplines of medicine
and clinical psychology in its consideration of ethical issues, and yet the researcher is
confronted with unique and complex ethical challenges” (Stroebe, Hansson, Stroebe, &
Schut, 2001, p. 12).
Some of the ethical issues are described by Cook (2001). They include issues of
recruitment methods employed by the researcher, the timing of the recruitment, issues
of informed consent, threats to confidentiality, increase in subject’s distress induced by
participation, a violation of cultural norms, and unethical application of study findings.
Several of the ethical concerns and responsibilities identified are particularly relevant
to the question of how best to link research and practice. Intervention studies can be
particularly ethically problematic because of the tension that exists between the need to
generate data to inform clinical practice and the potential harm to the bereaved that may
result through their participation in research (Genevro, Marshall, & Miller, 2003).
Summary
An examination of the ethical and legal issues of loss, grief, and mourning in a single
chapter is a formidable task. There is not enough space within a single unit to completely
address the issues presented. The topics examined focused primarily on postmortem
issues. Almost immediately after a death has been declared, and often before the person
has been so certified, issues of organ and tissue donation arise. The need for donors far
exceeds the availability of organs and tissue necessary to save lives. The first concern is
to be as certain as one can that a death has occurred. The declaration of death is both
a medical and a legal decision. Not only does declaring a person dead bring a stop to all
forms of aggressive intervention, but also removes any constitutional rights the deceased
had.
We come to the next issue—who, if anyone, now owns the body? Not only does the
answer to this question impact on whether an autopsy will be performed and on organ
and tissue donor programs but also indicates who has the responsibility to dispose of
the decedent’s body. The subsequent issue is, once the determination of ownership or
responsibility has been made, how might the body be disposed of?
Three additional issues related to the survivors are briefly discussed. These include
the debate concerning the inclusion of bereavement in the diagnosis of MDD; a grieving
person’s rights, if any, to a paid time off from one’s job in what is popularly called
bereavement leave. Lastly, since the research in bereavement requires subjects who have
experienced a loss, what ethical practices should be followed to ensure the subjects are
not caused any additional pain and suffering.
191
Assessment and Intervention

Chapters 21 – 27
Chapters 21 through 27 focus on assessment and intervention.

The Body of Knowledge Committee defined this major category of
thanatology knowledge in this way: information gathered; decisions
that are made; and actions that are taken by professional caregivers
to determine and/or provide for the needs of the dying, their loved
ones, and the bereaved.
The chapters in Part 4 focus on assessment and intervention in terms

of these indicators: culture and socialization, religion and spirituality,
historical and contemporary perspectives, life span issues, the family
and larger systems, and ethical and legal issues. Six of the chapters
are revised from the chapters that appeared in the first edition. One
chapter (27) from colleagues in Israel is wholly new.
193
Chapter 21
Culture and Socialization in Assessment

and Intervention
Ester R. Shapiro
Clinical vignette: Carmen Ruiz was a 32-year-old single Puerto Rican woman and 3rd of
11 siblings when her 50-year-old mother, Gloria, died of breast cancer, leaving Carmen
in charge of three younger siblings: Mario, age 24 and a heroin addict, and two half-
siblings, Roberto, age 16, and Luisa, age 11. Carmen became her mother’s coparent at
age 8, when her hard-drinking father died in an accident near home in rural Puerto Rico,
and her mother was pregnant with Mario. Gloria Ruiz relocated her family to Boston
where, remaining single, she had the two younger children. While older siblings married
and had families, Carmen learned little English, her world revolving around her mother
and care of their household. With Gloria’s diagnosis of stage IV breast cancer, Carmen
became her mother’s primary caretaker through swift progression of devastating illness
reducing her beautiful, sociable mother to agonized skin and bones. At her mother’s
request, Carmen became the younger children’s primary parent, struggling to establish
parental authority but thwarted by their rebellion and rejection. Seeking parenting help
at our Child Guidance Center, she was referred to a new Family Bereavement Center
where I worked. Respecting her request, initial interventions used behavioral parenting
counseling techniques to help Carmen set effective age-appropriate limits with her
half-siblings. As these relationships improved, Carmen requested help with her own
overwhelming grief and family conflicts concerning bereavement. Carmen disclosed her
continuing close yet troubled relationship with her mother’s spirit, who visited her nightly
in dreams and scolded her for not taking proper care of the children. The younger siblings
were frightened by Carmen’s invocation of their mother’s deceased spirit and refusal to
change anything in their mother’s bedroom. Her older siblings thought Carmen’s grief
exceeded acceptable cultural and spiritual traditions.
In weekly individual meetings with Carmen supplemented by family consultation
sessions with the younger children and extended family, we explored Carmen’s current
grief in light of her history as designated family caretaker, positively framing her self-
sacrifice as a generous contribution to family well-being. At the same time, we identified

this moment as a meaningful developmental opportunity, exploring how Carmen might
take up aspects of her own, interrupted life course, enjoying the independence and focus
on personal goals she made possible for others. At a family meeting, the older siblings
noted that Carmen’s experience as her mother’s coparent and continuing connection with
her mother’s spirit mirrored her great aunt’s relationship to her maternal grandmother.
These conversations provided a link to an intergenerational legacy consistent with familial
and cultural traditions, while making differences a basis for shared understanding and
connection. Using her language for images of relationships, we revisited her relationship
with her mother. Carmen requested help understanding her mother’s illness, and we
reviewed her thick medical chart, translating the English while decoding the high-
technology medical treatments. Recognizing that failure to provide translation impacted
both her mother’s care and her own confusion, Carmen further realized her mother had
delayed care, reluctant to face a diagnosis destroying her cherished feminine beauty and
social life. As we explored their relationship, Carmen was able to speak up about her
frustrations, especially her thwarted needs for a life of her own, first to me and then
directly to her mother during her nighttime visits. I coached her to respectfully speak
out in her own defense to her mother’s spirit, who responded well, becoming more
supportive of Carmen and complimenting her parenting. This transformed relationship
with her mother’s spirit freed Carmen to pursue life interests: She enrolled in English
language classes at a local church, began dating, and asked for more household help
from both her older and younger siblings.
When I met Carmen Ruiz in 1982, bereavement practice emphasized expressing

distressing feelings and decathexis or closure in relationship to the deceased, with little
to offer in understanding culturally based experiences of death and grief for diverse
U.S. communities whose experiences with loss were also interwoven with impacts of
inequalities. In psychiatry, assumptions made by psychoanalysis were being replaced by
remedicalization, displacing community mental health perspectives with dehistoricized,
decontextualized symptom checklists used in DSM-III to achieve consensus on symptom
presentations. I was fortunate to work with colleagues coming out of community-based,
social-justice informed approaches to understanding race, culture, community, and
bereavement who supported my work applying an intergenerational family development
approach to grief as a family process (Shapiro, 1994). Listening to Carmen and other
bereaved patients, I drew from my own experiences within an immigrant Cuban Eastern-
European Jewish family whose life-course losses were intertwined with political disruptions
and diaspora. I also drew from experiences conducting qualitative research on gendered
adult development during family lifecycle transitions and from our interdisciplinary
community-oriented mental health team that brought in bereavement experts focused on
lived experiences of social realities, challenging prevailing psychopathology perspectives
Culture and Socialization in Assessment and Intervention 195
and expanding the frame to cultural and sociopolitical considerations. Since that time, I
have focused my practice and training efforts on educating culturally and developmentally
informed practitioners sensitive to contexts who can address presenting concerns
while identifying and mobilizing resources supporting growth even under adverse
circumstances. This approach to culture, grief, and growth emphasizes practitioner self-
knowledge regarding both personal and professional assumptions regarding death’s
impacts and mutual learning through collaborative, strengths-based inquiry about the
complexity of culture as a resource in facing societal barriers and opportunities as these
contribute to death’s multifaceted impacts. This approach also allows using the power
of intergenerational and life-course perspectives in understanding death’s timing and
cultural contexts as redirecting shared development and the central role of advocacy for
mobilization of multisystemic resources supporting positive shared development (Shapiro,
2007).
This chapter argues that cultural and ecosystemic developmental perspectives on
bereavement practice need to be incorporated into a holistic understanding of the
intervention knowledge base in thanatology. Paul Rosenblatt, whose qualitative research
on culture and grief has spanned 4 decades, argues that, “No knowledge about grief is
culture free” (Rosenblatt, 2008, p. 207). LaRoche (2012) notes that segregating culture
as if it could be isolated from other aspects of human experience can easily lead to an
approach drawing from social stereotypes and be vulnerable to racial profiling. Further,
for many of the world’s communities, in the United States and globally, understanding
relationships between life and death incorporates culturally specific, historically evolving
religious traditions (Klass, 1999b). Yet this broad understanding of culture as intertwined
with all other facets of death and grief experiences presents challenges in reviewing
literatures needed to understand culture and socialization in thanatology interventions.
First, because of the diverse settings within which thanatologists practice, culturally
meaningful bereavement care needs to consider timing and settings of experiences
with death. The reasons for requests for services and their clinical and societal contexts
may vary widely, from health care settings grappling with recommendations regarding
appropriate end of life in acute, palliative, or hospice care to concerns about potentially
burdened or symptomatic bereavement pathways in the immediate aftermath or many
years later. We are used to thinking of these pathways in developmental terms for children
only, yet culturally informed human development perspectives allow us to appreciate
how child, adult, and family processes are interdependent, gendered, and grounded in
cultural time and place (Valsiner, 2003, 2012). Finally, social environments are not created
equal, and ethnic minorities and socially disadvantaged groups, in the United States and
all over the world, live with and die with the consequences of what the health disparities
literature terms excess death (Thomas et al., 2011) and barriers to needed resources
that are increasingly the focus of health promotion perspectives in thanatology (Fook &
Kellehear, 2010; Oliviere et al., 2011).
Using culturally based ecosystemic frameworks as a lens on developmental

psychopathology and resilience attuned to social inequalities and cultural strengths,
I selectively review culturally sensitive practice literatures offering opportunities
to incorporate strengths-based health promotion perspectives as well as problem
prevention in interventions. These literature reviews include current literatures on cultural
competence in health care and gender-sensitive multicultural counseling, especially
the growing literature calling for culturally sensitive end-of-life and bereavement care.
Cultural and multicultural counseling approaches view culture as dynamically constructed
and emergent in specific intervention contexts and as including the counselor’s own
culturally based beliefs and values, professional training, and treatment setting. Further,
they expand our appreciation of the relevant knowledge base for practice and of the
ethical dimensions of practice with communities targeted by inequality (Enns & Williams,
2012). Culturally sensitive care also has to connect to quality care initiatives in health care
and community services; building bridges to consensus on best practices in bereavement
care compatible with culturally meaningful assessment and intervention more broadly
(Bernal & Domenech, 2012; LaRoche & Christopher, 2009). Finally, culturally sensitive
practice approaches emphasize institutional and practitioner ethics, accountability
and advocacy in recognizing the ways marginalized communities are targets of social
exclusion or discrimination, and working actively as advocates for change (Gambrill,
2012; Prilleltensky, 2012; Thomas et al., 2011; Ungar, 2012).
Culturally competent care requires attention to a scientific knowledge base, while
expanding our appreciation of where knowledge comes from, incorporating person,
family, and community centered perspectives. Such work requires systematic critiques of
social or cultural assumptions and ideologies, multimethod and partnership approaches
to inquiry that examine patients and communities, uncovering the privilege of their lived
experiences and goals, and calling for accountability for changing unjust conditions (Bernal
& Domenech, 2012; Enns & Williams, 2012; Gambrill, 2012; Sue & Sue, 2008). Culturally
sensitive bereavement care consistent with these frameworks incorporates culturally
meaningful health promotion, empowerment, and social justice approaches reducing
symptoms of distress and promoting wellness while addressing social inequalities in both
exposure to stressors and access to resources.
To address these complexities in culturally sensitive thanatology practice, this chapter
integrates interdisciplinary, multicultural counseling, and cultural competence frameworks
using synthesis of multidisciplinary ecosystemic developmental models highlighting life-
course potential for promoting grief and growth in contexts of resourceful, resilient
communities, and collaborative inquiry and intervention approaches emphasizing access
to needed resources in achieving person and family-centered goals. Whether we work
with individuals or families, we consider intergenerational relationships and social contexts
in creating a shared understanding of death, its circumstances, and realistic impacts as
well as meanings for what matters most in a transformed life. Through this inquiry, we
can partner to cocreate a new, more developmentally favorable ecological niche for facing
death and grief, identifying and mobilizing positive coping resources, while supporting
attainment of desired goals for change and growth. This selective review also introduces
work in cultural adaptation of evidence-based practice (Bernal & Domenech Rodriguez,
2012), while describing implications for thanatology emphasizing constructivist and
narrative approaches to transformations of meaning making (Denborough, 2008;
Neimeyer, 2012), revised relationships with both other bereaved family members and
the deceased as resources in coping with death supporting resilient adaptation (Koenig
& Davies, 2003; Silverman, 2000b), multisystemic factors associated with resilience in
bereavement responses that can be targeted in bereavement care (Mancini & Bonanno,
2012; Sandler et al., 2008; Shapiro, 2007), and intervention research applying family-
centered multisystemic approaches alleviating distress while mobilizing positive coping
resources (Kissane & Bloch, 2002; Kissane & Hooghe, 2011; Shapiro, 2012).
Cultural Complexity in Thanatology Practice: Understanding
Death and its Impacts in Everyday Life Contexts
Societies have traditionally taken tremendous care with the shared transformation of
life into death, because of their responsibility to preserve everyday life’s continuity and
stability in the face of death’s many disruptions. Cultural beliefs and practices concerning
death and its aftermath emerge from a cosmology of shared worldviews incorporating
death into interdependent, intergenerational lifecycles under highly specific circumstances
for everyday survival. Who died, how they died, who remains to mourn and remember
them, and what assistance they should expect from their community, are interpreted
in light of cultural understandings of death, its timing and circumstances, and its place
in connecting the arduous present to an ancestral past and a hoped-for future. The
United States is a pluralistic, diverse society, yet dominant assumptions supported by
medical and mental health models emphasize decontextualized private experience,
individual autonomy, and capacity to overcome all challenges through problem-solving
action. Culturally meaningful assessment and intervention in thanatology requires a
shared journey of inquiry into the cultural complexity of death’s place and its impacts
in unique yet interdependent life pathways unfolding in highly specific settings. Further,
thanatologists train in multiple disciplines and work in diverse practice contexts. Each
discipline and practice setting provides its own guidelines for culturally sensitive care within
disciplinary and organizational guidelines for quality care. Cultivating critical thinking,
essential to knowledge-based culturally sensitive practice, requires a systematic approach
to examining knowledge claims and recognizing the societal and scientific ideologies and
economic or prestige incentives underlying them (Gambrill, 2012). Culturally meaningful
care cannot be conducted in a vacuum, but rather responds to changing health care and
community service systems and current challenges to achieve greater efficacy and equity
(Institute of Medicine, 2003).
Ecosystemic approaches to practice (Becvar & Becvar, 2006; Boyd-Franklin, 2003;

McDaniel et al., 2005; Ungar, 2012) identify individual, family/relational, neighborhood/
community, and sociocultural levels within which to assess relevant qualities of individuals,
their relationships, formal and informal institutions, social practices or policies, and their
interpretations or meanings contributing to particular adaptive outcomes of interest.
Collaborative practice models are found in many disciplines, and draw from social
constructionist views of change emphasizing the culturally and relationally based nature
of subjective reality and the importance of power sharing, especially in contexts of social
inequality (Neimeyer, 2009; Pare & Larner, 2004).
Ecosystemic models emphasize the dynamic complexity, interdependence, and
contingency/responsiveness to context of adaptive outcomes for any individual,
while identifying risks and resources empirically associated with resilient, ordinary and
expectable, or problematic adaptation, especially with exposure to adversity. Culturally
meaningful practice requires recognition of the multifaceted nature of cultural experience
and the enormous range of individual differences and contexts that can create differences
in the interpretation of culture within any given family or community (LaRoche,
2012). Using a collaborative approach to ecosystemic practice, clinical assessment and
intervention are understood as consultations, constructed through a compassionate,
respectful dialogue using an individual and family’s own language for their struggles,
exploring culturally based assumptions and goals for interdependent development (Boyd-
Franklin, 2003; Falicov, 2012; Shapiro, 1994, 2012). This approach draws from relevant
research literatures studying cultural protective factors in positive coping with the stresses
of acculturation and racism (Boyd-Franklin, 2003); research on developmental pathways
resulting in positive and symptomatic adaptive outcomes throughout the life span and
emphasizing resilience in coping with adversities such as death, divorce, poverty, exposure
to racism, or community violence (Luthar, 2006; Sandler, 2001); psychotherapy research on
effective practice emphasizing patient-directed goals, mobilizing supportive relationships
and resources within and outside therapy (Prochaska & Norcross, 2009; Gibbs, 2002)
and culturally meaningful adaptation of evidence-based practice (Nagayama-Hall, 2001;
Bernal & Dominech Rodriguez, 2012). It recognizes the scientifically demonstrated power
of the sacred healing arts (Koenig, King, & Carson, 2012), and conducts a culturally
sensitive spiritual inquiry as part of a basic assessment.
Ecosystemic dimensions of culture relevant to thanatology must focus not only on
death, its circumstances, and meanings, but also on the social resources available for
rebuilding disrupted lives in the presence of death and grief. In every society, disparities
in available resources due to race, ethnic minority status, gender inequality, or social
class differences intersect uniquely to generate the circumstances, consequences, and
meanings of death and grief. Culturally informed thanatology practice requires that we
consider a society’s distribution of stressors, risks, and protective resources exposing
some individuals or communities to higher rates of mortality risk while depriving them
of access to resources promoting recovery and resilience. Dimensions of culture relevant

to thanatology practice include the cultural specificity of spiritual and religious beliefs
and practices; an individual’s location in immigration/acculturation processes; evaluation
of an individual’s relationship to dominant cultural resources, beliefs, and practices; and
negotiation of individual differences in the interpretation of culture, which may differ by
personal style, gender and generation within the same family.
In conducting assessment and intervention from a cultural perspective, the thana-
tologist joins the ecosystem and has a responsibility to understand him or herself as a
potential resource or barrier to successful adaptation, growth, and change. Some authors
argue that the medical and mental health fields have themselves become subcultures
with their own beliefs and economic interests guiding their prescriptions for responding
to death, dying, and grief. In the mental health field, this medicalization of bereavement
has led to overemphasizing psychopathology rather than the contextual risks or resources
individuals and families experience, and neglect of the culturally meaningful strengths
they mobilize in response to contexts of inequality or social exclusion (Prilleltensky, 2012;
Ungar, 2012). A strengths-based, goal-oriented inquiry emphasizes the bereaved’s own
account of their experience and needs, highlighting culturally meaningful goals for life in
the presence of grief. These approaches help us consider with each unique individual and
family how cultural resources can help transform and repair altered landscapes, econom-
ics of survival, relationships and roles, and meanings shattered by a loved one’s death and
its circumstances.
Clinicians conduct a culturally meaningful appreciative inquiry into death and its
impacts, creating a collaborative contract for interventions supporting person and family
determined goals. Culturally meaningful thanatology practice:
• Recognizes the practitioner’s own location in specific cultures of personal and
professional experiences and practice settings and seeks consultation from
colleagues supporting rigorous questioning regarding cultural assumptions:
When I first met Carmen Ruiz, I was a secular Jew with hospital training in
psychopathology and Spanish fluency; I was able to work from a strengths-based
cultural framework with the support of a multidisciplinary team committed to
emphasizing cultural and community resources in the face of social oppression.
• Explores culturally mediated individual experience of death and its impacts using
a multidimensional, dynamic understanding of culture as a force organizing roles,
relationships, emotions, and beliefs in everyday life, while connecting these to the
flow of intergenerational time and to the wider society: Carmen and her family
found it helpful to understand differences in their grief responses as due to
different ages and life experiences within the family. We framed Carmen’s more
extreme grief response as rooted in Puerto Rico’s unique synthesis of Catholic,
African, European spiritist, and indigenous beliefs in the enduring presence of
spirits, as based in an intergenerational family legacy, and as reasonable given
her assigned caretaker role after her father’s death; these framings helped
initiate a new conversation about how best to support Carmen in her grief and
new roles while also addressing the needs of the younger siblings and extended
family.
• Conducts a culturally informed appreciative inquiry into person and family
experience and goals for life in the presence of death that is compassionate,
strengths-based, and accountable to family-determined goals: Carmen first
requested help with more effective parenting. The success of structured
behavioral interventions for setting limits at home made the next step possible,
in which she requested help with her own deep bereavement and its discordance
with that of other family members.
• Creates a collaborative contract for interventions that closely follows the patient
and family’s stated goals, applying and adapting appropriate, effective clinical
tools: I followed Carmen’s narrative lead in framing the visits from her mother’s
spirit as dreams and in hearing her distress at her mother’s unfair criticisms. I
appreciated Carmen’s positive contribution as designated coparent going back
to her father’s death, while using her mother as an example of how someone
could grieve and also go on to enjoy a full life, to affirm that Carmen also had
these rights. After a coaching session role playing how Carmen could express
her frustrations and needs to her mother’s spirit, she was able to challenge her
mother’s criticism respectfully and constructively. Subsequently she reported
that her mother’s spirit had ceased criticizing and had instead complimented
her, saying the children were looking well and gorditos or plump, high praise in
a culture concerned about economic survival associating plumpness with good
health.
• Recognizes both individual uniqueness in death and grief responses and their
interdependence based on gender, generation, and unique relationships to
the dying and deceased: While Carmen Ruiz felt a deep connection to an
intergenerational legacy of continuing spiritual bonds to her deceased mother,
her older, less acculturated siblings endorsed that tradition but felt she took it
too far, while her younger highly acculturated siblings found these traditions
unfamiliar and frightening. Both individual sessions and family consultations
were designed to increase positive family communication, mutual understanding,
and resolution of conflicts in ways that negotiated differences while enhancing
mutual affection and shared support.
• Explores culturally meaningful resources for positive change, identifying leverage
points helping reduce distressing symptoms while also mobilizing relationship
and environmental factors associated with positive coping in responding to a
loved one’s death and coping with its aftermath: In the Ruiz family, ecosystemic
leverage points included: at the individual level, work with Carmen on her
developmental history of grief as well as on making progress in adult skills and

goals such as speaking out about her needs within the family, learning English,
and exploring new intimacies outside the family; at the familial level, discussing
differences in grief reactions made it possible for the family to negotiate
differences and gain greater compassion for Carmen; behavioral interventions
created a more stable home environment with age appropriate rules; extended
family and community resources were mobilized to support Carmen in her new
role as parent and in her new life goals.
Culture, Socialization, and Human Development
The cultural dimension of death and grief has long been the province of anthropologists,
who have appreciated the ways a community’s rituals and beliefs facilitating the passage
between life and death illuminate its beliefs and practices. Moments of social transition are
valuable in understanding the workings of culture, because for most of us, culture is part
of the atmosphere or ethos of our everyday lives, appearing as natural and unremarkable
as the air we breathe or as the solid ground beneath our feet. We are socialized into
culture from before birth, through the work of generations anticipating our futures. From
birth, we are born neurologically incomplete, formed by relationships with caretakers
whose talent for survival we depend on and from whom we learn our place in the world.
Valsiner (2012) integrates cultural and dynamic developmental systems framework to
articulate four interdependent dimensions of culture generating human development:
landscape and the natural world, economic activities for survival, human roles and
relationships, and cultural symbols and meanings. Valsiner suggests that human symbolic
activity guided by culture allows us to organize and symbolize our understanding of our
environments, so that we are both shaped by them and shapers of them. The experience
of embeddedness in culture as natural and given is reinforced by continuity in our social
environments and by the neurocognitive schemas or working models of relationships we
develop for making sense of the world. Yet both the challenges of contemporary life, in
which our intergenerational socialization is characterized by discontinuity between the
world of our parents and our progeny, increasingly require reflexivity, or the capacity
to evaluate or own subjectivity as bounded by our social location so as to adapt with
flexibility and agency to a continuing process of change (Enns & Williams, 2012). What
appears to be a private, isolated self in Western psychology can best be understood as
interdependent and contingent, organized by specific life circumstances, relationships,
and shared adaptive goals responsive to changing contexts for development. Our
schemas or working models of relationships balance universal human needs for self-
assertion and connection, responsive to cultural roles and meanings guiding gendered,
intergenerational relationships as we confront specific problems of the family lifecycle
(Shapiro, 2008).
Throughout human development, both expected and unexpected lifecycle transitions
create disruptions and discontinuities that we bridge by drawing on the relationships,
environments, private and shared meanings that offer stability and continuity, ways
of making the new and unknown safe and familiar. Cultural anthropologists use the
construct of liminality to describe rituals of transition as culturally sanctioned spaces of
transformation bridging one state or stage and the next. Cultural death and grief rituals
are designed first and foremost to reassure the broader society that a community’s life
goes on after a member’s death. They may not necessarily fit an individual or family’s
unique needs in response to a very particular death, its circumstances, and its cultural
context. In culturally diverse societies, and in traditional societies changing through
modernization, the relationship between culturally sanctioned death and bereavement
rituals and an individual or family’s grief experience may be discordant (Shapiro, 1996).
For this reason, thanatologists conducting an assessment and planning an intervention
with bereaved families need to understand cultural dimensions relevant to bereavement
care as contextual, multidimensional, and unfolding in specific contexts for shared
development. Reflexivity, conceptualized by feminist and multicultural counseling as a
necessary process for rigorously examining practitioner social location as evoked by client
characteristics, becomes an increasingly central dimension in any intervention relationship
(Enns & Williams, 2012). Fook and Kellehear (2010) argue that reflexivity becomes
particularly important in shifting frameworks towards health promotion in palliative care.
Models of Culturally Competent Practice:
Implications for Thanatology
Clinical practice fields are currently developing guidelines for culturally informed practice
that vary by discipline and by emphasis. Health care and medicine most often use the
term cultural competence, while the fields of counseling and psychotherapy more often
refer to multicultural counseling competencies. There is a great deal of debate in this field
about use of the term competence, as compared to cultural humility better capturing the
complexity of culturally informed interventions and the clinician’s stance as learner. Other
debates include:
1. The importance of ethnic-specific knowledge versus process approaches
emphasizing universal principles for contextualizing care;
2. The value of ethnographic approaches in cultural anthropology or crosscultural,
comparative psychology versus multicultural counseling models emphasizing
both diversity and power inequalities within a single social context; and
3. The relevance of research on effective practice, much of which has not included
diverse patient populations nor culturally meaningful dimensions of treatment
(Leong & Lopez, 2006; Domenech & Bernal, 2012).
In the field of cultural competence and health care, Arthur Kleinman’s work on
illness narratives as negotiated meanings has been especially influential (Kleinman,
1990; Fadiman, 1997). Kleinman’s recent work emphasizes the moral dimension of
patient experiences of suffering, recommending that questions about the patient’s
own understanding of the illness and its cause also explore what matters to the patient
within his or her specific social world. His poignant contribution to the bereavement field
(Kleinman, 2012) argues that his experience as a widower, interpreted through the frame
of his work, suggests that a biomedical perspective on bereavement psychopathology
overlooks the importance of grief experiences as they honor our most important
relationships. Carrillo et al. (1999) developed a framework for a patient-based approach
to crosscultural primary care incorporating Kleinman’s questions into a culturally sensitive
clinical interview emphasizing social contexts as well as private meanings. This model
teaches skills for negotiation between clinician, patient’s and family’s explanatory models
of illness and its impacts, and the patient’s desired agenda for care. This model calls
for a social context review of systems exploring economic burdens, migration history,
social support, language literacy, and health communication, doing so in ways that are
patient-centered and problem-specific. The influence of Kleinman’s patient-centered
cultural approach is also evident in the American Psychological Association recommended
DSM-V guidelines for cultural inquiry.
The most widely referenced models of multicultural counseling (Sue & Sue, 2008)
argue for a process-oriented understanding of culture emphasizing clinician self-
knowledge, respectful communication, and openness to learning even when one’s own
personal or professional assumptions are challenged by a unique individual or family. Sue
and Sue (2008) present a multidimensional approach to developing cultural competence
mapping three components of cultural competence: clinician awareness of attitudes and
beliefs, knowledge about cultural groups and their complexity, and clinical intervention
skills with knowledge of how to best adapt these to cultural beliefs and preferences.
These components of cultural competence operate at multiple levels of individual,
professional, organizational, and societal and require specific knowledge about racial
and cultural groups. While these models often include major themes in worldviews
of Latino Americans, African-Americans, Asian-Americans or Native Americans, they
do so to heighten awareness of differences when compared to assumptions made by
psychotherapy and counseling practice based on European Americans. These approaches
caution clinicians to balance universalist (etic or outsider’s view) and relativistic (emic
or insider’s view) methods by recognizing the ways both individual subjectivity and
cultural socialization influence experience. Clinically, they require practicing what Sue
and Sue call dynamic sizing, assessing when to generalize and when to individualize
interventions, depending on how well a particular group’s cultural norms fit a specific
individual. Further, different dimensions of culture become relevant in addressing specific
challenges or problems. The specific challenges of death and its aftermath may call forth
traditional ancestral beliefs in otherwise highly acculturated individuals; may bring deeply
religious individuals into a crisis of faith; and may increase diversity within a single family
whose members may mourn a death distinctly yet interdependently based on culturally
meaningful differences in gender, generation, and acculturation. In any treatment setting,
the practitioner’s socialization into cultural assumptions, the cultural beliefs and practices
of a particular treatment setting, and the person in treatment will cocreate a dynamic,
multifaceted cultural context for interventions.
Recent work on cultural competence and evidence-based practice (Bernal &
Domenech Rodriguez, 2012; Bernal & Saez-Santiago, 2006; Hwang, 2006; Nagayama-
Hall, 2001) also emphasizes the importance of knowing empirically supported treatments
relevant to a particular patient’s care, while also adapting these in ways that are sensitive to
culturally based values and experiences. Nagayama-Hall suggests that sensitivity to issues
of interdependence, attention to religion and spirituality, and inquiry into experiences of
discrimination are examples of culturally meaningful themes that can reorient empirically
supported treatments to increase their cultural competence.
Culturally Meaningful Care in Thanatology: Literature Review
Most of the published literature on assessment and intervention in culture, death, and
grief uses an ethnographic cultural approach that considers cultural influences on behavior
from a single cultural context, or a crosscultural approach comparing cultural differences
across different nationalities (Klass, 1999). Rosenblatt (2008) uses a social constructionist
approach to culture, death, and grief that emphasizes the dynamic, coconstructed
nature of grief reactions. In the field of thanatology, the greatest progress in establishing
guidelines for culturally sensitive care has been made in the field of end-of-life and
palliative care. As can be expected given the very different social contexts for health care,
the UK and Australian literatures emphasize public health perspectives in which health
care in general, and compassionate palliative and hospice care in particular, are seen as
human rights and guided by governmentally sponsored systematic guidelines. Richardson
and Koffman (2012) explore the role of cultural and spiritual beliefs in end-of-life care,
for religious and ethnic minority groups experiencing the end of life in the context of
multiple, intersecting social disadvantages. They describe the work of the UK charity Social
Action for Health, which conducted community-based participatory research to explore
the end-of-life experiences of South Asian immigrants and the role of both culturally
meaningful practices and societal experiences of exclusion as important dimensions in the
education of practitioners. Evans et al. (2012) reviewed the British literature on cultural
competence in end-of-life care and were alarmed by the inconsistencies in definitions and
guidelines, suggesting that the field is very much in need of systematic integration. Gysel
et al. (2012) reviewed the literature on culture and end-of-life care in seven European
countries, noting an overemphasis on the quantitative literature in biomedicine, excluding
critical contextual factors meaningful to patient- and family-centered care, and lacking a
focus on ethnic minority groups within these national settings. Jones (2005) reviews the
qualitative research literature on diversity in end-of-life care, applying a view of culture
as socially constructed that emphasizes philosophical differences with Western medicine
and bioethics emphasizing patient privacy and autonomy. Jones suggests that family-
centered and meaning-making approaches in palliative and hospice care support the
specific explorations into relationships, religious beliefs and spirituality, social roles, and
values needed in appreciating diversity in end-of-life care.
The U.S. literature on culture and end-of-life care has been growing in recent years,
recognizing the ways racial and cultural health disparities in access to quality care can impact
patient experiences throughout the treatment process and at the end of life (Kagawa-
Singer et al., 2010). Barrett (2001) reviews the multicultural competency literature
and its implications for end-of-life care. He highlights the need for self-knowledge of
privilege on the part of clinicians, an attitude of respect and openness to learning about
the role of cultural differences, their intersection with other factors such as social class
or sexual orientation, and their relevance in a particular setting, sensitivity to histories of
discrimination and their impact on crossracial relationships, and willingness to consult with
and refer to knowledgeable colleagues. He argues that culturally competent clinicians
are sensitive to institutional barriers preventing minorities from accessing resources for
end-of-life care, and to the need for ethnically and racially diverse practitioners offering
consultation and care.
Prigerson et al. (2012) argue that while institutional factors and lack of consistent
end-of -life guidelines impact racial and cultural differences in end-of-life care, physician
sensitivity to communication with diverse patients and to cultural and contextual factors
including experiences with racism and spirituality need further study and implementation.
Searight and Gafford (2005) review cultural diversity issues in end-of-life care relevant
for family physicians, identifying cultural differences in communication of bad news, in
who makes decisions concerning care, and in attitudes toward advance directives and
end-of life care. They emphasize the greater diversity in preferences for end-of-life
care among ethnic minority patients and their families, including sensitivity to cultures
that see direct disclosure of terminal diagnoses as potentially disrespectful or harmful
in eliminating hope and causing distress. Many immigrant groups, especially Asian-
American and Hispanics, place less emphasis on patient autonomy that they may see as
isolating, instead valuing protecting patients from burdens of making treatment decisions
that are handled by family members in positions of authority due to age or gender. Ethnic
minority patients are less likely to sign advance directives, and family members may
view advance directives as giving up on a patient’s life, compounded by experiences of
discrimination and barriers to access. Preferences for aggressive treatment at the end of
life may also stem from different views of suffering and the value of life or from emphasis
on filial piety and the importance of elders to family life. Because of the complexity and
sensitivity of these culturally based beliefs and communication processes, they stress the
importance of asking direct questions concerning these preferences and using trained
medical translators.
Koenig and Davies (2003) focus on culturally sensitive care for dying children and
their families, identifying “differences that make a difference” including immigration
status and different cultural beliefs about medical authority; disclosure of illness status;
and ways that culture, ethnicity, and race are distinct from social class. They emphasize
the importance of communication and negotiation with families about appropriate care,
use of medical interpreters when needed, and explaining medical decision making while
taking into account cultural differences in attitudes toward palliative care vs. curative care
or in declaration of death. They offer a template for assessing ethnocultural differences in
care for children with life-limiting conditions and their families that includes: evaluating the
actual language used by the child and family members and their openness to discussing
diagnosis, prognosis, and death; determining the locus of decision making and their
expectations concerning the child’s involvement and the medical team’s authority versus
shared decision making; considering the relevance of religious beliefs concerning healing,
death, and the afterlife; evaluating cultural attitudes toward suffering and expressions
of pain; assessing how hope for recovery is regarded and discussed; evaluating desires
for control of care and views of family involvement in nursing and supportive care;
considering issues of gender, political and historical considerations including immigration
history, poverty, and histories with racism and discrimination, and using family and
community resources in these evaluations. After the child’s death, culturally sensitive
assessments need to address expectations for how the body should be approached and
handled and preferences for expression and duration of grief.
Summary: Challenges of Culturally Competent
Thanatology Practice
In sum, culturally meaningful thanatology practice requires a commitment to personal and
professional reassessment in response to the challenges presented by cultural differences
in death, dying, and bereavement within a diverse society, for example:
• To appreciate the lived experiences of racism and grief described by African-Ameri-
cans if we are protected by white-skin privilege (Barrett, 2001; Rosenblatt & Wallace,
2005)
• To understand intergenerational obligations constraining Japanese American bereaved
adults, caught between elders expecting obedience and acculturated defiant teens,
when we view mature independence as emphasizing individual rights (Hwang, 2012)
• To learn how Latino families bring indigenous and African beliefs into interpretations
of Catholicism, when we have learned to label these practices as “primitive” (Falicov,
2012)
The great challenge for practitioners striving to understand another culture emerges
both because we take our own cultural understandings for granted and because our power
and authority makes it possible to inadvertently overlook or silence the experiences of
more vulnerable others. For this reason, most guidelines for culturally informed practice
emphasize the practitioner’s rigorous self-questioning about his or her own cultural biases
in every clinical encounter, because each creates a new unique configuration of clinician,
patient, and clinical context. This relationally based self-knowledge is generated through
respectful listening and willingness to leave the safe territory of expertise, in order to
be educated, humbled, or surprised by what we learn from others about their culturally
based experiences with dying, death, loss, grief, renewal, and growth. Families become
the experts on their own experiences of death, dying, and grief within culture, and we
gain enormously from these opportunities to leave our own cultural comfort zones. We
learn how far we can go before we confront the limits of our expertise, and when we need
to collaborate with or refer to practitioners with the appropriate linguistic and cultural
background. We learn how to explore a bereaved family’s own goals for grief, recovery,
and growth and to help them mobilize the personal, family, and community resources
to do so. Clinical encounters with difference require that we carefully scrutinize our own
assumptions in an ongoing conversation with colleagues and with the bereaved families
we serve. Using terms such as collaboration and dialogue emphasize that communication
across differences must be centered on knowing the lived experiences and desired goals of
others, especially when that knowledge will challenge our own personal and professional
assumptions. Through the self-awareness generated by authentic dialogue, we can learn
to appreciate how realities we confront in our lives and values we strive to live by shape
distinctive pathways for new lives altered by death.
In ecosystemic, collaborative thanatology practice, the culturally meaningful
appreciative inquiry initiating an assessment already incorporates important principles
mobilizing positive growth, healing, and wellness. Respectful listening sensitive to the
ways death and its circumstances have impacted on family members, with an attitude
of openness and curiosity about what a family might teach us about their understanding
and traditions, creates a climate of relationship support honoring the family’s narrative
experience. This actively counters the experience of being treated in disrespectful or racist
ways due to ethnic minority status and of having relationships sidelined in the interest
of high-technology care in many settings. By conducting an appreciative inquiry, we
have actively framed a way of listening, learning, goal setting, and planning designed to
reduce suffering and distress while also promoting positive developmental processes that
mobilize positive adaptation and growth.
Culturally sensitive care requires a creative rethinking of our customary practice
training, as we evaluate what we thought we knew for certain and discover the worlds of
diverse patients we had little exposure to. It challenges us to learn new dimensions of our
own cultural socialization in our own changing family lifecycle, as we encounter diverse
individuals struggling with illness mortality and loss. It rewards us with an extraordinary
expansion of our worldviews and affirms the vast resources for replenishment available
even in the midst of suffering and adversity.
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Chapter 22
Religion, Spirituality, and Assessment

and Intervention
Kenneth J. Doka
Introduction
One cannot understand life-threatening illness as only a medical crisis. It is a psychological,
social, and family crisis as well. Yet, even more than that, it is a spiritual crisis—fraught
with existential questions.
This chapter attempts to address, at least in part, those questions. The chapter begins
by defining both spirituality and religion and exploring the ways that spirituality and
religious faith influence the experience of life-threatening illness, death, and grief. It seeks
to offer tools for assessing and utilizing the spiritual strengths of those who face illness
and the prospect of death—recognizing that in this final encounter an individual needs
to marshal all resources.
Religion and Spirituality: An Overview
Religion and spirituality are often elusive concepts that are difficult to define and
differentiate. For example, a New Zealand study of patients and providers found divergent
definitions. Some simply equated religion and spirituality. A second group saw spirituality
in the nonphysical and extraordinary dimensions of life, while a third group defined it in
more humanistic and existential terms (Egan, MacLeod, Jaye, McGee, Baxter, & Herbison,
2011). A Consensus Conference funded by the Archstone Foundation brought together
scholars and practitioners from a broad range of fields and disciplines in 2009. The agreed
upon definition emerging from the Consensus Conference was that: Spirituality is the
aspect of humanity that refers to the ways that individuals seek and express meaning
and purpose and the way they experience their connectedness to the moment, to self,
to others, to nature, and to the significant or sacred (Puchalski, Ferrell, Virani, Otis-
Green, Baird, Bull, Chochinov, Handzo, Nelson-Becker, Prince-Paul, Pugilese, & Sulmasy,
2009, p. 887). The International Workgroup on Dying, Death, and Bereavement defines
spirituality as “concerned with the transcendental, inspirational, and existential way to
live one’s life” (1990, p. 75). Miller’s definition is more poetic:
Spirituality relates to our souls. It involves the deep inner essence of who we are.
It is an openness to the possibility that the soul within each of us is somehow
related to the Soul of all that is. Spirituality is what happens to us that is so
memorable that we cannot forget it, and yet we find it hard to talk about because
words fail to describe it. Spirituality is the act of looking for meaning in the very
deepest sense; and looking for it in a way that is most authentically ours (1994).
To Miller, spirituality is inherently individual, personal, and eclectic. Religion, however,
is more collective. Religion is a belief shared within a group of people. Miller again offers
a lyrical perspective:
Now religion works in a very different way. While spirituality is very personal,
religion is more communal. In fact, if you take the words back to its origins,
“religion means that which binds together,” “that which ties things into a
package.” Religion has to do with collecting and consolidating and unifying.
Religion says, “Here are special words that are meant to be passed on. Take them
to heart.” Religion says, “Here is a set of beliefs that form a coherent whole.
Take them as your own.” Religion says, “Here are people for you to revere and
historical events for you to recall. Remember them.” Religion says, “Here is a
way for you to act when you come together as a group, and here’s a way to
behave when you’re apart” (1994).
Thus while spirituality is very personal, a person’s spirituality may very well be shaped
by an individual’s religious beliefs. Yet, because of the individual nature of spirituality,
religious affiliation is not likely to be the sole determinant of spiritual beliefs. Often
developmental outlooks, personal experiences, and cultural perspectives will join with
religious beliefs in shaping an individual’s spirituality.
However, whatever these beliefs are, they are likely to be challenged by life-
threatening illness, dying, and death. As stated earlier, a life-threatening illness is an
existential crisis. The encounter with the possibility or even the probability of death
raises a series of questions. Why do I have this diagnosis and why now? Is life worth
this suffering, treatment, and uncertainty? Is it consistent with my belief system, my
spirituality to cease treatment or forego certain types of treatment? If I recover what did
I learn, what will I take, and what will I do with this experience? If I die, did my life have
meaning, and how do I wish to die, and what will happen after? Death brings similar
questions: Why did this person have to die—now or in this way?
A life-threatening illness or death then is a reachable moment—a time where
one’s spirituality looms large. Because the assumptive world is now called into question
a person is able to be reached—that is, to consider other ways to examine his or her
spirituality. That spirituality may offer answers and reassurance, breeding resilience. Or
that spirituality may seem empty now leading to an existential despair or a new quest for
a deeper spiritual sense that can sustain one in this crisis.
Religion, Spirituality, and Assessment and Intervention 211
Religion and Spirituality: Complicating and Facilitating Factors

Research has indicated that religion and spirituality can both facilitate and complicate
responses to life-threatening illness and grief. In reviewing this research, it is well to link
both terms as the operational definitions of spirituality and religion vary considerably
among the researchers. Nonetheless, this research has indicated that spirituality and
religion can have positive roles in assisting individuals who struggle with life-threatening
illness or grief.
For example, research has supported the fact that religion and spirituality can
assist persons in finding a sense of meaning in the illness (Siegel & Schrimshaw, 2002).
Often the diagnosis of a life-threatening illness challenges an individual’s assumptive
world as the person struggles with attempting to make sense of the illness. Later in the
illness, individuals may seek to make sense of their suffering, their death, or their life. In
summation, life-threatening illness strikes at the totality of the person—not just his or her
physical well-being but also his or her psyche, social relationships, and spirituality
Throughout this existential endeavor, religious and spiritual perspectives can offer
meanings. Religious and spiritual perspectives may reassure persons with life-threatening
illness that their illness is part of a larger plan or that the illness experience may offer
lessons to self or others. Even with death, there is some evidence that religious and
spiritual beliefs may minimize fear and uncertainty (Siegel & Schrimshaw, 2002). In short,
spiritual and religious perspectives can assist individuals in making sense of the illness.
It may also allow a sense of a larger connection. Even in the inherent existential
isolation of an illness, there may be a sense that a god or some higher power will sustain
and protect. This connection may be more tangible as well. Many individuals may benefit
from the social support available through the ministries of a chaplain, clergy, spiritual
advisor, ministry team, or even within the larger faith community. The sense that one
is not alone—others are caring, visiting, and praying seems to provide benefit (Siegel &
Schrimshaw, 2002; Townsend, Kladder, & Mulligan, 2002).
Religious and spiritual practices and beliefs may even enhance health. Most spiritual
belief systems suggest either abstinence or moderation in certain behaviors such as
alcohol or tobacco use. Such practices and beliefs may discourage inappropriate coping
techniques throughout the course of the illness or subsequent grief. Spiritual and religious
beliefs also may enhance coping by encouraging self-esteem. Most religious and spiritual
systems stress the inherent worth of the individual. Such beliefs may be especially
important in a life-threatening illness or in grief where self-blame may loom large and
self-acceptance is threatened. There is also some speculation that spiritual and religious
beliefs may have physiological benefits such as lowering blood pressure or enhancing
immune function though here the research has shown some inconsistency (Dane, 2000;
Lin & Bauer-Wu, 2003; Miller & Thoresen, 2003; Olive, 2004; Sephton, Koopman, Shaal,
Thoresen, & Spiegel 2001; Stefanek, McDonald, & Hess, 2005).
Religious and spiritual beliefs also may influence an individual’s sense of control. In a
time of life-threatening illness, an individual may feel that he or she has little or no control.
Religious and spiritual beliefs may reaffirm a sense of personal control. Self-efficacy can
be expressed in a number of ways. Individuals may have a sense of interpretive control—
that is the ability to find meaning or benefit from the experience. They may have a sense
of vicarious control—leaving the illness in the hands of a higher power. In some cases,
the control may be of a predictive nature, perhaps believing that God will cure them or
be with them throughout this experience.
Yet, this discussion also demonstrates the ways that religious and spiritual beliefs
may complicate the response to a life-threatening illness or grief. For example, a person
with life-threatening illness may be convinced that he or she may be cured by a divine
intervention. If death ensues, such an individual or other family members may become
immobilized, unrealistic in decisions, or even despondent.
Certain religious or spiritual beliefs may serve to increase rather than decrease death
anxiety or complicate grief. For example, fears over divine judgment or uncertainty in an
afterlife may not offer comfort to a dying person. The certainty with which religious and
spiritual beliefs are held as well as the nature of such beliefs is a factor in the reasons that
the relationship of religiosity and spirituality to death anxiety is inconsistent (Neimeyer,
1994). Moreover, religious and spiritual perspectives can sometimes conflict with medical
practices and advice. For example, some spiritual systems such as Christian Science
may eschew any medical treatment while others such as the Jehovah Witnesses may
prohibit certain medical practices such as blood transfusions or blood-based therapies.
In other cases, a fatalistic spirituality may inhibit health-seeking behaviors or adherence
to a medical regimen. It is little wonder that Pargement, Koenig, Tarakeshwar, and Hahn
(2004) found in a longitudinal study that certain types of religious coping such as seeking
spiritual support or believing in a benevolent god were related with better health while
other spiritual coping behaviors and beliefs such as a perspective of a punishing god or
religious discontent were predictive of declines in health.
Religious and spiritual beliefs also may be evident in reactions to illness. For example,
anger could be directed toward god. There may be anger that one has the disease or
that the disease has come at an inopportune or unfair time. Guilt may be clouded by a
moral guilt—a belief that this illness is a punishment for some transgression. Fear and
anxiety, as mentioned earlier, can also have a religious or spiritual root, as one may fear
the wrath of God in this world or the next. There may even be an existential sense of
abandonment—a sense that one is facing the crisis alone, alienated from god. In all of
these cases, religious and spiritual beliefs may intertwine with psychological and affective
reactions to the illness.
Spiritual Tasks in Life-Threatening Illness
Throughout the illness, an individual may have to cope with distinctly spiritual tasks. In
an earlier work (Doka, 1993b), I proposed, building on the work of both Weisman (1980)
and Pattison (1978), that life-threatening illness can best be viewed as a series of phases.
These phases are the prediagnostic, diagnostic, chronic, terminal, and recovery phases. In
any particular disease, individuals may jump from one phase to another. For example, in
some cases, a successful removal of a tumor may place an individual right into a recovery
phase with virtually no chronic phase. In another disease, diagnosis may be immediately
followed by a steep and inexorable decline toward death. In each phase, there were
distinct medical, psychological, social, and spiritual tasks.
For example, with the first two phases, the prediagnostic and diagnostic phases,
individuals had to deal with the diagnosis of a life-threatening illness. As Weisman (1980)
notes that even when the diagnosis is expected or feared, it still comes as a shock,
creating a sense of existential plight where one’s very existence is threatened. Often it is
a life divide. Even if the person survives the encounter, it often will be seen as a turning
point wrought with implications that follow for the rest of life.
Here the spiritual issue is incorporating the present reality of illness into one’s sense
of past and future. Questions such as, Why did I get this disease, now? loom large here.
An individual now struggles to make sense of the disease and of the new reality of his or
her life. Spiritual and religious beliefs may offer an answer to these questions or at least
provide direction for further quest.
The chronic phase centers around the time of treatment. Here the individual must not
only cope with the disease but also the burdens and side effects of treatment. Often as
persons continue such treatment, they may resume some of their prior roles—returning
to work or functioning within their families. Often, this time is lonely. The crisis of the
diagnosis is now past, so family, friends, and other social support may not be as available.
This phase can also be a time of great uncertainty as individuals cope with the ambiguities
of both the disease and treatment.
In the chronic phase, suffering may become a major spiritual issue. Why am I suffering
through this disease and treatment? Is it all worth it? Persons will often look to their
religious or spiritual beliefs to make sense of this suffering. Their beliefs may vary. Again
some may see the suffering as retribution for sins in this or another life. Some may even
find comfort, believing that suffering now may offer recompense or even purification
that will mollify God or better prepare them for an afterlife. Others may see suffering
as random. Still others may see their suffering as a learning experience allowing greater
empathy. Others may see it as sacrifice, offering it as a way to gain a greater connection
to God or others. Such beliefs can strongly influence patients’ receptiveness to pain
management (Doka, 2006).
Not everyone dies from life-threatening illness. Many individuals may fully recover,
resuming their lives, and others may face long, even permanent, periods of remission.
Yet, the encounter with disease leaves all types of residues. Individuals may have an
enhanced sense of their fragility, feeling that they are living under a sword that can strike
at any time (Koocher & O’Malley, 1981).
There also are spiritual residues. Individuals may struggle with a sense of the bargain.
It is not unusual for persons to make spiritual commitments and promises in a cosmic
deal to surmount the illness. Now that they have recovered from this threat, individuals
may now feel they have to fulfill their promises. A failure to fulfill such commitments may
loom large should a person experience a relapse or even encounter another disease.
There may be other spiritual changes as well. Some individuals may move closer to
their religion or become more spiritually aware and active. Others may feel alienated either
from their god or their spiritual community. Some may actively seek a new spirituality,
perceiving that their past beliefs did not serve them well in this crisis.
During the course of a life-threatening illness, patients and their families will have
to make critical ethical decisions about care. How long should active medical treatment
persist even if it is perceived as futile? When should treatment cease, and who should be
empowered to make such determinations? Should the patient receive artificial hydration
and nutrition? Can treatments be withheld, or if administered, withdrawn? Is assisted
suicide ever a valid ethical choice in life-threatening illness?
Health professionals have long realized that religious and spiritual systems play a
significant role in the ways that patients and their families make end-of-life decisions and
resolve ethical dilemmas (Koenig, 2004). As patients and their families struggle with these
decisions, they often turn to their religious and spiritual values, and even to their clergy
or spiritual mentors, for guidance.
In the terminal phase, the goal of treatment moves from extending life or curing
the individual to a strictly palliative goal. In this phase, individuals often struggle with
three spiritual needs (Doka, 1993a; 1993b). The first is to have lived a meaningful life.
Individuals may assess their life to find a sense of meaning and purpose. Here individuals
may struggle seeking forgiveness for tasks unaccomplished or for hurtful acts that they
may have committed. Life review and reminiscence therapy can assist individuals in
achieving a sense of meaningfulness. Individuals may struggle with a second goal—to die
an appropriate death, however that experience is individually defined. A final spiritual need
is to find hope beyond the grave: The individual needs a sense that life will continue—
in whatever appropriate way is supported by the person’s spiritual understanding. This
sense of continuity can include living on the memories of others, in the genes of family
members, within one’s community, in the creations and legacies left, in a sense of eternal
nature (that is, that one returns to the cycle of life), in some transcendental mode, or in
an afterlife (Lifton & Olsen, 1974; Doka 1993b).
Spirituality and Grief: After the Death
Families, too, may cope with similar spiritual issues. Even after the individual dies, the
family may still spiritually struggle, trying to reconstruct their own faith or spiritual system
that may have been challenged by that loss (Doka, 1993a). There may be very significant
spiritual issues as individuals experience grief. Bereaved individuals may experience a
number of spiritual reactions. There may be a loss of faith. Individuals who are grieving
may have a spiritual or cosmic anger—alienating them from sources of spiritual strengths
such as their beliefs, rituals, faith practices, or their faith community. They may experience
a sense of moral guilt—or a belief that the death of the deceased is due to some moral
failing or sin that is now being punished.
As in illness, spirituality can be both facilitating and complicating. It may allow a sense
of meaning—that this loss fulfills some purpose or is part of a cosmic plan. Spirituality
can offer a sense of connection—a belief that the deceased is now safe or happy or
a belief that even entertains a possibility of future contact or reunion. Spiritual beliefs
and practices can even allow a continuing connection—through, for example, prayer,
veneration of ancestors, or some other form of contact.
Yet, not all beliefs or practices are facilitating. Some beliefs may disallow or disenfranchise
the normal feelings of grief as indicating a lack of faith. Other beliefs may trouble the
bereaved. For example, a survivor of a completed suicide who feels that a person who
commits suicide faces eternal damnation may find such a belief complicates grief.
Assisting Individuals and Families at the End of Life:
Utilizing Spirituality
Since spirituality is so central as individuals and their families struggle with later life, it
is important that holistic care includes spiritual assessment. The Consensus Conference
suggested a threefold process that included a quick spiritual screening to assess whether
the illness has created a spiritual crisis, a spiritual history to understand the patient’s needs
and resources, and a full spiritual assessment completed by a board certified chaplain
(Puchalski, Ferrell, Virani, Otis-Green, Baird, Bull, Chochinov, Handzo, Nelson-Becker,
Prince-Paul, Pugilese, & Sulmasy, 2009). Based on the results of such a process, spiritual
intervention can become another component of care.
While there are a variety of tools to assist spiritual histories and assessment (Hodge,
2005; Ledger, 2005), the key really is to engage both the individual and family in an
exploration of their individual and collective spiritual histories. The goal is to understand
the collective and individual spiritual journeys. Do they identify with a particular faith?
Do they actively practice that faith—engaging in public and private rituals and practices?
Do they belong to a church, temple, synagogue, or mosque? How important is their faith
system in making decisions?
Such an assessment should go beyond religious affiliation. It might be worthwhile
to explore with individuals when and where they feel most spiritually connected.
What practices they utilize when they’re stressed, anxious, or depressed? What are
the stories, prayers, or songs that offer spiritual comfort? Such approaches may allow
a larger exploration of the very distinct ways that individuals find meaning and hope.
An assessment may yield information on spiritual strengths that an individual possesses,
themes within an individual’s spirituality (such as grace, karma, fate, or retribution etc.),
and experiences that have tended to challenge that person’s spirituality. Occasionally,
such an assessment may uncover forms of spiritual abuse—spiritual beliefs or practices or
behaviors of spiritual mentors that have resulted in a sense of spiritual alienation.
Once an assessment of spirituality is made, individuals can be encouraged to connect

with their spiritual strengths. Often, this connection involves their clergy, chaplains,
spiritual mentors, or members of their faith community. Clergy, chaplains, and other
spiritual mentors can play an important supportive (and sometimes an unsupportive)
role as an individual responds to a life-threatening illness, death, or grief. Their visits
throughout the illness may be valued. Clergy, chaplains, and other spiritual advisors may
be sought as an individual or family member responds to the spiritual questions inherent
in the experiences of grief and illness. Despite the importance of ministry to the ill, the
dying, and bereaved, many clergy reported little formal seminary education on dealing
with dying patients and their families (Doka & Jendreski, 1985; Abrams, Albury, Crandall,
Doka, & Harris. 2005).
While clergy, chaplains, and other spiritual mentors play an important role, faith
communities also can play a critical role. Often, such communities can offer spiritual
comfort and connection; visits, calls, cards and letters that show support and ease isolation;
and assistance with tangible tasks such as cooking, home maintenance, transportation,
and caregiving. Spiritual beliefs and practices also may be sources of strength. A person’s
spiritual beliefs may be critical in making meaning throughout an illness and for family,
after the death. Often a simple question such as, How do your beliefs speak to you in
this situation? can engage the person in spiritual exploration. It may also be useful to
investigate the ways that the individual’s beliefs assisted and helped the person make
sense of the experience in earlier crisis. There may be situations where the individual’s
beliefs seem inadequate or dysfunctional.
Spiritual practices such as prayer and meditation also may have a role in the illness. At
the very least, intercessory prayer (that is the prayer of others) is a tangible sign that the
individual is not facing this crisis alone. It offers family and friends a tangible thing to do—
reaffirming a form of vicarious control in an unsettled time. Individuals who are struggling
with physical illness often use prayer as a form of coping (Ribbentrop, Altmaier, Chen,
Found, & Keffala, 2005). There is some evidence that prayer and meditation do affect
physical health in a number of ways including lowering stress levels and blood pressure
(Mayo Clinic Health Letter, 2005). Schroeder-Sheker (1994) has even pioneered the field
of musical thanatology, using spiritual music as a way to ease the transition to death.
Rituals also can be a source of comfort to both the ill or dying patient as well as
family. Many faith traditions that have rituals for the sick and the dying, such as the
Roman Catholic Rite for Anointing of the Sick (popularly known as Last Rites) or rituals
at the time of death such as washing or preparing the body.
Individuals who do not have distinctive rituals as part of their tradition may be invited
to create one at the time of death. These rituals can include acts such as lighting a candle,
anointing the dead person, and joining in prayer or meditation, singing a spiritual hymn
or song, or in other, individual ways saying a final goodbye to mark the transition from life
to death. Rituals work well in these liminal or transitional moments—offering participants
a way to acknowledge loss and transition.
Certainly rituals after the death such as funerals can be critically important to families
and others as they cope with loss. Funerals can allow mourners a sense of reality of death,
a chance to ventilate feelings, meaningful actions in a disorganized time, opportunities
to remember the deceased, bring together supportive others, and interpret the death
according to their own philosophical or spiritual background (Rando, 1984). The value
of funerals can be enhanced when mourners have opportunities to plan and participate
in the ritual (Doka & Jendreski, 1985). Moreover rituals can be utilized therapeutically
throughout the mourning process (Martin & Doka, 2000).
Conclusion: The Challenge of Spiritual Support
Spiritual support can be a challenge. Many health professionals have little specialized
training in spirituality. Moreover, there may be concern lest one impose his or her own
spirituality upon a patient or family member. Sometimes out of respect for the diversity
and individuality of a person’s spiritual beliefs, health professionals may be reluctant to
enter into conversations involving religion or spirituality. Thus, there often is temptation
to leave these issues to chaplains, clergy, or other spiritual mentors. Such delegation
to spiritual mentors is unlikely to suffice. Spiritual concerns arise throughout the entire
experience of the illness. Patients and families will choose when, where, and with whom
they will share these spiritual concerns. These choices may not always fit into neat
organizational charts or job descriptions. They are the responsibility of the team.
Nor can these spiritual concerns be neglected. Holistic care entails that spiritual
concerns both are acknowledged and validated. A true respect for spirituality means
that such concerns and struggles need be addressed by every professional. Spirituality
therefore cannot be ignored. Death, after all, may be the ultimate spiritual journey.
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Chapter 23

on Assessment and Intervention
Robert A. Neimeyer and John R. Jordan
Historically, care for the dying and the bereaved has been the responsibility of family
members and their community. People have traditionally sought comfort from those
who knew the deceased and shared the loss. However, in keeping with the greater
complexity of modern life, these informal supports have been supplemented in recent
decades by a cadre of volunteers and professionals who offer some form of counseling
and guidance for people who have experienced loss. For example, in some countries
such as the UK, support networks have grown to include well-coordinated organizations
of trained volunteers who provide outreach to the recently bereaved under the aegis
of groups like Cruse, which organizes national and regional conferences to share
developments in theory, research, and practice. In the United States, the growth of
organizations such as the Association for Death Education and Counseling provides
for similar dissemination of knowledge and skills among professional counselors,
coupled with certification programs to ensure their familiarity with recent theories
and research. In Australia, government-funded bereavement care is becoming even
more fully integrated into the national landscape, especially in the aftermath of natural
disasters such as bushfires and floods that have devastated whole communities.
Finally, in recognition that bereavement care is a crucial element of end-of -life care,
networks of bereavement care services throughout the world are growing to extend
the compassionate engagement of oncology and hospice services beyond the terminal
patient to family members. This chapter offers a brief review of some of the key concepts
that guide these more formal caregiving efforts, with a focus on the diagnosis and
treatment of problematic grief responses of adults following the death of a loved one.
It is divided into four sections: (1) historical perspectives, (2) contemporary perspectives
on assessment, (3) interventions, and (4) evidence-based practice.
Historical Perspectives on Assessment and Intervention

Foundational Concepts of Normal and Complicated Grieving
Perhaps inevitably, efforts to understand problematic grief lead to questions about
the boundary between normal and complicated responses. Indeed, the issue of what
constitutes normal grief, and whether there is any form of grief response that should be
pathologized, is one that is still contested within thanatology (Hogan, Worden, & Schmidt,
2006; Neimeyer, 2006a; Prigerson & Maciejewski, 2006). Similarly, important debates
have developed about the similarities and differences between grief and depression, and
the merit (or problems) involved in changing the diagnostic categories of the Diagnostic
and Statistical Manual (version V) to reflect a new understanding of bereavement-related
depression (Wakefield & First, 2012; Wakefield, Schmitz, First, & Horwitz, 2007; Zisook
& Kendler, 2007). While the potential for losses to be devastating has been the subject of
human reflection for thousands of years, the scientific study of bereavement can be dated
to the work of Sigmund Freud (Freud, 1957). His idea that healthy mourning required
decathexis (the withdrawal of emotional energy from the deceased), while pathological
bereavement involved a failure to psychologically let go of the deceased, has profoundly
influenced both professional and public views of what is to be expected in mourning
(Stroebe, Schut, & Stroebe, 2005). Subsequently, most major 20th century bereavement
theorists have set forth variations on this theme of decathexis (Bowlby, 1980; Lindemann,
1944; Parkes, 1996).
The key process in this conceptualization is grief work (trauerarbeit in Freud’s terms),
which assumes that mourning entails experiencing and expressing the difficult thoughts,
emotions, and memories that have been triggered by the loss (Stroebe, Gergen, Gergen,
& Stroebe, 1992). Seen from this broad psychodynamic perspective, grieving has been
viewed as a process of painfully reviewing or working through and then letting go of
the attachment to the deceased by way of confrontation with the reality of the death
and emotional catharsis of the resulting emotions. From this perspective, assessment
of the grieving process involves judging the extent to which this grief work has been
accomplished (or avoided), and interventions are designed to facilitate the resolution of
the attachment by assisting in this necessary labor. Failure to confront the reality of the
loss, as well as failure to perform the psychological work involved in letting go, have been
viewed as the core of a pathological grief response. Note that this viewpoint emphasizes
the largely intrapsychic nature of grieving, with pathological grief residing within the
psychological skin of the mourner.
Building upon this foundation, the 20th century also saw the emergence of various
stage and task models of bereavement. Beginning with the popularity of Kubler-Ross’s
book, On Death and Dying (Kubler-Ross, 1969), stage and task theories have been
widely accepted by the professional community as well as the public. Typically, stage
models suggest that mourners begin in a state of denial of the reality of the loss, and
move through a series of unwelcome emotional phases of adaptation marked by anger,
Historical and Contemporary Perspectives on Assessment and Intervention 221
bargaining, and depression before achieving some form of acceptance or resolution.

Alternatively, other theorists emphasize the necessary activities of grieving, such as the
need to accept the reality of the death, experience the pain of the grief, and adjust to
an environment in which the deceased is missing (Worden, 2002; Worden & Winokuer,
2011). Correspondingly, the failure to progress through the stages or tasks implies
unfinished grief work, and interventions are designed to facilitate resolution of this
uncompleted activity.
Recent Challenges to the Traditional Grief Work Model
These traditional views of mourning are being challenged on many fronts in contemporary
thanatology. For example, longitudinal studies of bereavement adaptation fail to provide
much support for a model of stages of emotional response to grief (Maciejewski, Zhang,
Block, & Prigerson, 2007). One recent study of a large cohort of bereaved individuals
suffering the death of a loved one by natural causes found that acceptance of the death,
presumably the final stage of adaptation, actually was the predominant response of
survivors from the earliest weeks of loss, with depression and yearning being the strongest
of the negative indicators of grief-related distress across 2 years of bereavement, while
symptoms of denial and anger occurred at consistently low levels. In contrast, for those
whose loved ones died by accident, homicide or suicide, disbelief did predominate in early
weeks, with anger and depression eclipsing yearning for the loved one across much of the
grieving period (Holland & Neimeyer, 2010). Such findings argue against the relevance of
one-size-fits-all models of mourning, as well as for the importance of evaluating popular
models against actual data on adaptation to loss.
Furthermore, research has called into question the necessity of confronting and
working through a loss for all mourners. For example, researchers present compelling
data that suggest that, at least after spousal loss, not everyone appears to go through a
painful process of depression and mourning. Some spouses seem to begin coping well
within a matter of weeks, and some even experience apparent relief following their
partner’s potentially lengthy illness or a long but conflictual marriage (Bonanno, 2004;
Bonanno, Wortman, & Nesse, 2004; Wortman & Silver, 1987). Such findings argue that
traditional models of grief have underestimated people’s resilience in the face of loss, and
indeed more recent empirical studies suggest that many normal grievers will adapt well
to loss over a period of several months, with or without formal grief counseling (Currier,
Neimeyer, & Berman, 2008) (particularly after more normative losses such as the death
of a partner/spouse in later in life).
Likewise, the idea that decathexis is central to the process of grieving is being
challenged by theorists who argue that the establishment of ongoing bonds with the
deceased is both healthier and more normative across human cultures than the notion
of detachment from the deceased (Klass, Silverman, & Nickman, 1996; Rubin, 1999).
While refinements are emerging in the types of continuing bonds with the deceased
that may be adaptive or pathological (Field, Gao, & Paderna, 2005), the field appears
to be moving away from the earlier view that successful mourning necessarily involves a
relinquishment of the emotional attachment to the deceased. Instead, evidence suggests
that maintaining an emotional bond with the loved one may be comforting or distressing,
depending on such factors as how far along survivors are in their bereavement (Field &
Friedrichs, 2004), whether they have been able to make sense of the loss (Neimeyer,
Baldwin, & Gillies, 2006), and perhaps their level of security in important attachment
relationships (Stroebe & Schut, 2005). Accordingly, theorists espousing a two-track
model of bereavement (TTMB) (Rubin, Malkinson, & Witztum, 2011) advocate assessing
difficulties occurring on both the track of biopsychosocial functioning (e.g., depression,
anxiety, work performance) and the track of the relationship to the deceased (e.g., how
the loved one is held in memory, residual feelings in the relationship, ritual practices for
maintaining his or her presence in the mourner’s life). This two-track assessment then
permits careful targeting of problems in both domains in the context of grief therapy.
In the wake of growing skepticism about traditional models of mourning, other new
theories also have been proposed. One such model is the dual process model of coping
with bereavement formulated by Stroebe and Schut (Stroebe & Schut, 1999, 2010),
which argues that normal grief involves an oscillation between confronting the loss (loss
orientation) and compartmentalizing it so that the mourner can attend to the life changes
necessitated by the death (restoration orientation). This increasingly influential departure
from traditional thinking describes mourning as a cyclical rather than linear and stagelike
process, as the mourner repeatedly revisits the loss and its associated emotions, strives to
reorganize the relationship to the deceased, and to take on new roles and responsibilities
necessitated by a changed world. This formulation also extends our understanding of
pathology by suggesting that the inability to distract oneself from or avoid grief may
be as much a sign of pathology as the inability to confront it. It is important to note,
however, that although recent research documents engagement in both loss-oriented
and restoration-oriented stressors on the part of bereaved people, just what constitutes
the optimal balance and timing of focusing on each remains to be determined (Carr,
2010).
Yet another important theoretical development is the emergence of a meaning
reconstruction approach to grief (Neimeyer, 2011a; Neimeyer, Burke, Mackay, & Stringer,
2010). In this perspective, bereavement is viewed as challenging the survivor’s self-
narrative, the basic organization of life events and themes that allows people to interpret
the past, invest in the present, and anticipate the future (Neimeyer, 2006b, 2001).
Although the meaning systems on which people rely to negotiate life transitions are
often resilient, providing resources that promote adaptation, recent research documents
that a painful search for meaning in the near aftermath of loss forecasts more intense
grief months and years later, whereas the capacity to find significance of the loss predicts
greater long-term well-being and resilience (Coleman & Neimeyer, 2010). Attention to
this quest for meaning may be especially critical in cases of traumatic loss, such as suicide,
homicide, and fatal accidents, where an inability to make sense of the death appears
to mediate the impact of these violent as opposed to natural deaths on the subsequent
adaptation of the survivor (Currier, Holland, & Neimeyer, 2006), perhaps especially in
the case of suicide bereavement (Jordan, 2008; Jordan & McIntosh, 2011). Likewise,
studies of parents who have lost a child have documented that a struggle to make sense
of the loss accounts for considerably more of the intensity of the parents’ grief than such
objective factors as the passage of time, the cause of death, or the parents’ gender (Keesee,
Currier, & Neimeyer, 2008). Investigations that trace just what meanings the bereaved
find in their experience are therefore particularly useful (Park, 2010), such as those that
suggest the generally salutary role of spiritual meaning making in predicting less intense
grief after tragic loss (Lichtenthal, Currier, Neimeyer, & Keesee, 2010). Nonetheless,
other recent research suggests that spiritual coping is no panacea for profound grief, as
longitudinal study of people mourning the homicide of a loved one suggests that high
levels of complicated grief symptomatology earlier in bereavement forecast later spiritual
struggles, whereas neither positive nor negative religious coping predicted subsequent
grief (Burke, Neimeyer, McDevitt-Murphy, Ippolito, & Roberts, 2011; Neimeyer & Burke,
2011). Taken alongside the accumulating evidence for the role of sense making and
benefit finding in bereavement adaptation (Neimeyer & Sands, 2011), such findings
argue for the relevance of meaning-making strategies in grief therapy, a point to which
we will return.
Lastly, although social support has generally been acknowledged as important by
most grief theorists (Stroebe, Stroebe, Abakoumin, & Schut, 1996), the failure to grieve
successfully has traditionally been understood as a problem contained within the individual
mourner. However, recent approaches have begun to focus on the transactional nature of
mourning at levels ranging from family processes (Walsh & McGoldrick, 2004) to cultural
discourses about bereavement (Dennis, 2011). This view suggests that the meaning of
the loss for an individual cannot be separated from the family, community, and societal
meanings ascribed to death and loss and the resulting social responses to the mourner.
This more systemic approach recognizes that the bereaved must adapt not only to a world
where the deceased is no longer physically available, but also where many other altered
aspects of the postloss interpersonal landscape must be confronted. While these changes
have clear intrapsychic components, they also intimately involve the interactions that
mourners have with other people, who provide approval and support for or disapproval
and withdrawal from the bereaved based on the fit of the mourner’s coping style with
their altered networks (Neimeyer & Jordan, 2002). Beyond this focus on the broader
social context, exacting qualitative research on the relational negotiation of grief within
families has begun to document their dynamic regulatory processes, such as cooperation
in maintaining a bearable distance from the acute pain arising from the loss of a child,
while also safeguarding the child’s memory (Hooghe, Neimeyer, & Rober, 2012).
In short, developments in bereavement theory are beginning to change our
understanding of what constitutes an expectable response to loss, and with it, our view
of what constitutes pathological grief. This shift toward a more complex and refined
understanding of the heterogeneity of the grief response is particularly important for
assessment and intervention, the topics to which we shall now turn.
Contemporary Perspectives on the Assessment of Grief
Complicated Grief: Symptomatology and Diagnosis
Currently, the mental health community, as represented by the current edition of the
Diagnostic and Statistical Manual of the American Psychiatric Association (DSM IV-R),
does not officially recognize any pattern of grief as pathological. Bereavement is viewed
as a life problem that may need clinical attention, but it is not, in and of itself, a mental
disorder. Instead, difficulties adjusting to a loss must be diagnosed in terms of depression,
anxiety, or other disorders, such as posttraumatic stress disorder (PTSD). This official
position notwithstanding, a great deal of evidence has accumulated over the last 15
years that supports the diagnosis of one particularly pernicious response to bereavement,
alternately termed complicated grief (CG) (Shear et al., 2011b) or prolonged grief disorder
(PGD) (Prigerson et al., 2009)1. Table 1 summarizes criteria for this condition, adapted
from those put forward by the two major work groups contributing to the literature and
summarizing existing research.
Table 1. Diagnostic Features of Complicated Grief

1. Duration of bereavement of at least 6 months
2. Marked and persistent separation distress, reflected in intense feelings of
loneliness, yearning for or preoccupation with the person who has died
3. At least 5 of the following 9 symptoms experienced nearly daily to a disabling
degree:
• Diminished sense of self (e.g., as if a part of oneself has died)
• Difficultly accepting the loss on emotional as well as intellectual levels
• Avoidance of reminders of the reality of the loss
• Inability to trust others or to feel that others understand
• Bitterness or anger over the death
• Difficulty moving on or embracing new friends and interests
• Numbness or inability to feel
• Sensing that life or the future is without purpose or meaning
• Feeling stunned, dazed, or shocked by the death
4. Significant impairment in social, occupational, or family functioning
Adapted from H. G. Prigerson, et al., 2009 and M. K. Shear et al., 2011a.
The criteria for CG essentially describe a combination of intense and prolonged

separation distress regarding the deceased, along with signs that the mourner’s adaptation
socially and psychologically have been compromised by the death. Note that the diagnosis
refers to symptoms experienced by the mourner, regardless of the circumstances of the
death, which may or may not be sudden or violent. A considerable amount of empirical
research has demonstrated that the presence of CG is associated with elevated rates
of psychological distress, physical illness, and social dysfunction (Lichtenthal, Cruess, &
Prigerson, 2004; Prigerson et al., 2009; Prigerson, Vanderwerker, & Maciejewski, 2008).
Moreover, the CG diagnosis has been shown to cohere as a symptom cluster, to differ
sufficiently from major depression and posttraumatic stress disorder to be legitimately
considered a separate diagnostic category (Prigerson & Maciejewski, 2006) and to predict
deleterious health outcomes even once depression and anxiety symptoms are taken into
account (Bonanno et al., 2007). Although a good deal of converging evidence supports
the validity of this conceptualization of complicated grief, it is worth underscoring that
it does not exhaust the ways in which bereavement can be complicated. For example,
in addition to increasing the risk of protracted and disabling grief per se, loss of a loved
one to homicide greatly elevates the risk of clinically significant posttraumatic stress
and depressive symptomatology in mourners, which also deserve careful evaluation
(McDevitt-Murphy, Neimeyer, Burke, & Williams, 2011). Similarly, research indicates that
complicated grief following suicide can be compounded by a keen sense of abandonment
or rejection, shame and stigma, concealment of the cause of death, blaming, and self-
destructiveness in the survivor (Jordan & McIntosh, 2010). Such findings underscore the
importance of a broad-gauge clinical assessment strategy that includes but is not limited
to complicated grief as an orienting framework for possible intervention. We will return
to this topic after introducing several relevant risk factors for CG below.
Risk Factors for Complicated Grief
Bereavement outcome research over the last 40 years has identified a number of factors
that forecast the development of prolonged and intense grieving. In a recent review of this
literature, Burke and Neimeyer (2012) considered 43 studies of prospective risk factors,
that is, features of the mourner, the social system, or the death itself that preceded the
loss of the loved one, and were associated with heightened or chronic grief in its wake.
Risk factors that emerged as most salient included being a spouse or a parent of the
deceased, low levels of social support, an insecure attachment style on the part of the
mourner, high levels of predeath marital dependency, preexisting psychological problems
such as a disposition toward depression or anxiety, and discovering the body (in cases of
violent death) or dissatisfaction with death notification. Inasmuch as CG is conceptualized
1 Note that these two terms are functionally equivalent, with the former emphasizing the complication of a
normal course of bereavement, and the latter emphasizing a chronic state of intense grieving that disrupts
functioning over a period of months or years. For clarity, we will adopt the nomenclature of complicated
grief in this chapter.
as an attachment-based disorder, with symptomatology indicative of separation distress

and preoccupation with the deceased (Prigerson, et al., 2009), it is understandable that
mourners who are vulnerable to feeling abandoned and alone, who suffer from excessive
anxiety or obsession, and who lose a security-enhancing or care-providing relationship,
under conditions of minimal support, and perhaps in circumstances that leave them
struggling with posttraumatic imagery, would be especially prone to the development
of CG.
In addition to these confirmed risk factors, studies further suggested several potential
risk factors predictive of intense and disabling grief (Burke & Neimeyer, 2012). These
included such circumstantial or demographic conditions such as being female, being
young, belonging to a minority group, having less education, little income, prior losses,
or losing a child of any age to a violent, sudden death. Unfortunately, few of those
conditions are modifiable in the context of therapy, though several point to the sort
of health care disparities that argue for a social justice orientation to bereavement care
(Molaison, Bordere, & Fowler, 2011). Other potential risk factors identified could be more
amenable to psychological treatment, such as low family cohesion; a struggle to find
meaning in the loss; and negative interpretations of the mourner’s self, life, future, or his
or her grief symptoms themselves. Fortunately, these are some of the psychosocial factors
targeted for intervention by evidence-based approaches to grief therapy, a topic to which
we will turn after considering the assessment of grief in a bit more detail.
Self-Report Measures of Grief Symptomatology
A number of paper and pencil measures for the assessment of the grief response have
been developed. Although widely used, early scales such as the Texas Revised Inventory
of Grief (Faschingbauer, 1981) and the Grief Experience Inventory (Sanders, Mauger, &
Strong, 1985) have a questionable psychometric foundation (Neimeyer, Hogan, & Laurie,
2008). Several newer bereavement measures offer the promise of more psychometrically
valid and clinically useful tools. These include the Hogan Grief Reaction Checklist (Hogan,
Greenfield, & Schmidt, 2001), the Core Bereavement Items (Middleton, Burnett, Raphael,
& Martinek, 1996), the Grief Evaluation Measure (Jordan, Baker, Matteis, Rosenthal, &
Ware, 2005), and the Inventory of Complicated Grief (ICG) (Prigerson & Jacobs, 2001).
Of particular interest is the ICG, which has been developed as a measure that specifically
taps into the symptoms of CG outlined in the proposed diagnostic criteria. A number of
specialized bereavement measures have also been created for specific types of losses,
including suicide (Barrett & Scott, 1989), sibling loss (Hogan & De Santis, 1992), and
perinatal loss (Toedter, Lasker, & Alhadeff, 1988).
Beyond these assessments of grief symptomatology, additional new measures have
been constructed and validated to assess key processes posited by contemporary models
of bereavement. These include the Inventory of Daily Widowed Life (Caserta & Lund,
2007) to measure orientations toward loss vs. restoration in the dual process model
(Stroebe & Schut, 1999, 2010), the Two-Track Bereavement Questionnaire (TTBQ)
(Rubin, Malkinson, Koren, & Michaeli, 2009) to evaluate biopsychosocial symptoms and
relationship to the deceased in terms of the TTMB (Rubin, et al., 2009; Rubin, et al.,
2011), and the Integration of Stressful Life Experiences Scale (Holland, Currier, Coleman,
& Neimeyer, 2010) to assess struggles in meaning making in response to loss, the focus
of the meaning reconstruction approach (Neimeyer, 2011a; Neimeyer, 2011b; Neimeyer
& Sands, 2011). All of these measures show promise as assessment tools in both clinical
and scientific contexts.
Clinical Assessment of Response to Bereavement
Whether or not self-administered questionnaires are used in bereavement counseling,
a thorough evaluation of the mourner’s experience, symptomatology, social and family
relations, and styles of coping can inform treatment. Factors to consider include:
1. Clients’ narratives of the death and their reactions to it. This factor encompasses
the trajectory of any illness and circumstances of the death, clients’ participation
(or lack of it) in the end-of-life or dying process, the funeral, and the subsequent
experience of living without the deceased. Of particular relevance are clients’
perceptions of how prepared they were for the death, as well as any aspects
of the death that were horrifying or terrifying for them, as these could suggest
traumatic as well as grief responses.
2. An exploration of the meaning of the loss for the mourner. This factor is
obviously a broad topic, and facilitating discovery of the meaning of the loss
can be a central goal of grief counseling itself. Topics might include the role of
the deceased in the mourner’s life, the changes that the loss is bringing about in
the mourner’s psychological and interpersonal world, and the degree to which
the coherence of the mourner’s assumptive world has been challenged. Useful
questions to explore these topics might include: What sense did you make of
what was happening at that time? How has the significance of the loss changed
for you over time? Were there any spiritual or philosophic beliefs that helped you
cope with this loss? Were these beliefs themselves challenged or changed by the
loss, and if so, how? How have you changed as a person as a result of this loss?
A broader frame for a meaning reconstruction interview can be found elsewhere
(Neimeyer, 2002a).
3. Clients’ own evaluations of their responses to loss. Asking, Is there anything
about the way that you are responding to this loss that especially concerns
you? can alert the clinician to a range of less obvious problems, such as the
client’s sensed failure to function in other important relationships (such as with
children), as well as acute problems such as suicide ideation. It can also help bring
to light aspects of grieving that might be disallowed and hard for the griever to
acknowledge or accept, such as anger or guilt. Alternatively, inquiring how a
trusted friend or family member would describe how the client is handling the
loss can reveal additional problems at interpersonal levels (My wife would say
I’m cutting off from her.) as well as at intrapersonal levels (She’s worried about
my anger). Finally, if the client is seeking therapy some months or even years
after the loss, it can be helpful to ask how he or she is doing now compared to
a few months ago. Concerns are raised when the client seems to be in a frozen,
protracted state of grief or deteriorating, and are assuaged when he or she can
acknowledge ongoing distress, but also identify clear signs of progress.
4. An assessment of the ethnic, cultural, religious, gender-based, and social class
factors that affect the mourner’s experience of the loss. These assessments often
give a sense of the implicit grieving rules to which the survivor is striving to
conform. Some avenues into such topics could include asking whether there are
ways in which others outside the family just don’t seem to understand the client’s
response to the loss, what sort of advice the client is receiving from them and
whether it fits for him or her, or what healthy grieving would look like, and where
he or she got that idea. This approach could segue naturally into therapeutic
questioning of whether these implicit standards and expectations work for the
client, and if not, what would. It can also be valuable to inquire about the client’s
perceptions about how other people from his or her social reference groups
(work colleagues, church or religious community, ethnic tradition, etc.) would
typically handle such a loss as theirs.
5. The quality of perceived social support from family and intimate others. This
factor includes the degree to which mourners feel understood by essential others
in their grief and the amount of interpersonal strain or abandonment that has
occurred around the loss. Also important is an assessment of the mourner’s
interpersonal skills and willingness to elicit social support from others in their
network, which again could suggest targets of intervention. Assessment of the
client’s coping fit with other members of their family, the general norms in the
family about the sharing of psychological distress, and the family’s shared or
conflicting narratives about the reasons for the death and the impact of the
death on the family and its members can reveal important information about
the mourner’s perception of communal support or alienation. Family-level
assessment and intervention, while beyond the scope of this chapter, can be
a vital part of facilitating healing in clients after the death of a family member
(Kissane, Lichtenthal, & Zaider, 2007; Kissane & Lichtenthal, 2008). Likewise,
it is not simply the absence of social support that may be problematic, but also
the number of actively negative interactions with one’s social network that may
impact bereavement outcome (Burke, Neimeyer, & McDevitt-Murphy, 2010).
6. The psychiatric history of the mourner. Of particular relevance are major affective
disorders (depression and bipolar disorder), posttraumatic stress disorder, and
substance-abuse problems. If the mourner has a positive history for psychiatric
disorder, follow-up should investigate whether he or she has received treatment
for the problem, its success, and any signs of the disorder(s) reoccurring within
the context of the grief.
7. The stability of the mourner’s life situation, including health, employment,

marital and family relationships, and living arrangements. In addition to buffering
or exacerbating bereavement distress, these domains of living can themselves be
affected by the client’s response to the death, contributing to secondary losses
and additional stressors of considerable clinical significance.
8. The quality of clients’ past relationships, both in their family of origin and in
subsequent relationships. Of particular importance are close relationships with
attachment figures, and relationships that may have been abusive, traumatizing,
or characterized by abandonment. These relationships can prime the client to
experience bereavement in similar terms, reinforcing a longer-standing sense of
the futility of intimacy, the inevitability of loneliness, or the danger of investing
emotionally in another.
9. The coping skills possessed by mourners. Both ability to confront the reality
of the loss when necessary and to take a timeout from grief to make necessary
changes in their world play a part in emotion regulation following loss. Also
significant are clients’ previous coping methods when faced with emotional
injuries and losses, with particular attention paid to coping efforts that are self-
defeating or self-destructive (e.g., substance abuse, suicidal behavior). The
manner in which the mourner has adapted to earlier life losses can also suggest
personal, social, and spiritual resources that could be useful in dealing with the
current loss.
10. The mourner’s expectations about counseling and how it might be of help.
Previous experiences with therapy (whether bereavement related or not), and
their perceived helpfulness or unhelpfulness, can give therapists a sense of what
the client has, and has not, found helpful in the past, and hence what might be
offered or avoided in the present treatment.
Interventions for Bereavement
Interventions for bereavement are offered in a great variety of contexts and can take a
still greater variety of forms. Here we will touch on some of these settings and strategies,
focusing particularly on interventions that have a coherent theoretical base and are
informed by both basic and applied research on grief and grief therapy.
Contexts of Intervention
Hospice and palliative care. In the United States and many other Western nations,
hospices and palliative care settings (especially those associated with oncology) routinely
provide some type of bereavement follow-up with families that have received services
(Chochinov & Breitbart, 2009). Hospices are probably the largest providers of professional
bereavement care in the United States. The typical hospice offers a range of services for
the bereaved, especially over the 1st year. These services may include individual grief
counseling; various kinds of bereavement support groups, sometimes oriented to the
community in general as well as family members of hospice patients; grief education;
social support programs; expressive arts therapies; grief camps for children; and sometimes
family bereavement programs (Connor & Monroe, 2011). Although programming across
different hospices is eclectic and creative, many settings are moving toward some form
of evaluation of their services to address the calls for greater medical accountability in the
institutions in which they are situated.
Community organizations and bereavement programs. Especially in North America,
a variety of institutions and groups provide bereavement support, including funeral
homes, churches, hospitals, and social service or bereavement agencies, with the great
majority of these providing, at a minimum, facilitated bereavement support groups.
Some cities have freestanding bereavement agencies that offer a wide range of services,
one example being the Wendt Center for Loss and Healing in Washington, DC (http://
www.wendtcenter.org/). Likewise, there are many self-help organizations that usually
have formed around a particular type of loss. Some examples are the Compassionate
Friends for parents who have lost a child (Klass, 1999a), TAPS for military families who
have lost an active duty member of the military (http://www.taps.org) and Heartbeat
(http://heartbeatsurvivorsaftersuicide.org/index.shtml) and Friends for Survival (http://
www.friendsforsurvival.org/) for people bereaved by suicide.(Jordan & McIntosh, 2011).
Other organizations, such as Widow to Widow in the United States (Silverman, 2005)
and Cruse Bereavement Care in the UK offer home visitation or drop-in services, with the
latter being particularly impressive in its goal to provide support services to any interested
bereaved person in the country (Parkes & Prigerson, 2009). Most agency-sponsored
support groups are conducted by a mental health professional or clergyperson, whereas
self-help groups are typically facilitated by lay volunteers, many of whom are themselves
survivors of similar losses who have received variable degrees of training for their role.
Very few controlled studies of the effectiveness of the typical community-based grief
support group have been conducted. Nor has there been much standardization of the
models used to guide these types of groups, although recent popular criticism of grief
counseling has increased pressure to demonstrate its value (Konigsberg, 2011).
Children’s bereavement centers. One particular variant of the community support
model is the Dougy Center in Portland, OR (www.dougy.org), a pioneering children’s
bereavement service. The Dougy Center offers developmentally attuned play or discussion
support groups for bereaved children of all ages, plus parallel groups for parents. The
program has been extensively replicated in the United States and around the world,
and has inspired other dedicated services such as the Highmark Caring Place centers for
grieving children throughout Pennsylvania (http://www.highmarkcaringplace.com/cp2/
index.shtml). Such agencies are widely accepted as a valuable form of bereavement care
for children, although again, formal studies of the efficacy of these programs appear to
be lacking at this time.
Disaster services. A variant of the support group model is Critical Incident Stress
Debriefing (CISD) or Management (CISM) (Mitchell, 1983). This procedure employs
a structured protocol for a group meeting (typically a single session) after a traumatic
event, such as a natural disaster or a terrorist attack. Participants are encouraged to

recount their experience with the distressing situation and are offered information about
the nature of the posttraumatic response. Originally developed for emergency response
workers such as police and fire personnel, this form of intervention has been widely
adopted by organizations involved with disaster response, such as the American Red
Cross. More recently, however, CISM has been criticized as lacking in empirical support
and possibly even being harmful for some participants (Gist & Lubin, 1999; Litz, 2004).
Partly in response to this concern, contemporary bereavement work in the aftermath
of natural or humanmade disaster tends to be more sustained and multifocal, offering
extended and varied forms of instrumental, socioemotional, and ritual support for those
losing loved ones (Kristensen & Franco, 2011).
Online support. An important and accelerating form of bereavement support is
the development of online resources for the bereaved (Stroebe, Van Der Houwen, &
Schut, 2008). These resources have the advantage of helping mourners find assistance
when there is a paucity of face-to-face resources within their own geographical area.
They also provide nonjudgmental support and much more availability than traditional
bereavement support groups, while affording the mourner the anonymity of the Internet.
This combination may be particularly important for people whose face-to-face support
networks are sparse or actively harmful to the mourner (Feigelman, Gorman, Beal, &
Jordan, 2008). In addition to listservs or online support groups, these resources may
provide reading lists, inspirational narratives, suggestions for coping, and links to other
online services. Examples of these types of resources might include GriefNet (http://
griefnet.org/) and Open to Hope (http://www.opentohope.com/). It is important to note
that the value and potential problems of using the Internet as a resource for psychological
and social support have begun to be evaluated. Nonetheless, it seems very likely that
utilization of this medium will increase in coming years.
Techniques of Grief Therapy
As might be expected of an interdisciplinary field like thanatology, which is situated in a
great variety of settings; serves a great range of bereaved individuals and families; and
addresses losses due to stillbirth, cancer, accident, and homicide among other causes,
the techniques of grief therapy are diverse in form and function. Here we sample from
the nearly 100 such practices documented by Neimeyer (2012) to illustrate the range
of methods available to professional (and in some cases volunteer) helpers. Many of
these techniques are integrated into the empirically informed therapies described in the
following section. Readers interested in specific instructions for each technique and an
illustration of its use in the context of an actual case study are encouraged to consult
Neimeyer (2012) for details.
Framing the work. Fundamental to most forms of grief therapy is the practice of
presence, that is, the fearless willingness to sit alongside clients, validating, clarifying,
and exploring their feelings and needs in the wake of grievous loss. As one expression of
this approach, the therapist can help clients cultivate mindfulness about their own grief
responses, which implies heightened abilities to observe their thoughts and emotions
without reifying or attaching to them, while practicing self-compassion. More specialized
techniques are built on this foundation, as therapists discern opportunities to address a
specific need that becomes evident as therapy progresses.
Modulating emotion. Especially when the pain of loss is fresh, or when one is
confronted by regrieving triggers like significant anniversaries, holidays, and reminders,
learning to regulate one’s level of emotional arousal in bereavement can be essential.
Monitoring the intensity of grief in a daily log takes a step in this direction, which is
furthered by meditative practice, exercises to discriminate grief from other significant
emotions, and sometimes, when bereavement-related depression is unremitting,
appropriate medication. In combination with some of the strategies reviewed below, this
can help mourners dose their grief, acknowledging the loss in the terms of the dual
process model without relinquishing restoration.
Working with the body. Grief is an embodied experience, so that listening to how
loss is held at bodily levels—as an emptiness in the heart, a constriction in the throat,
a churning in the abdomen—can inform us about the felt sense of our grief as well as
what we need to heal. Practices ranging from qi-gong through movement therapies to
symbolic body drawings can promote awareness and give direction to healing action.
Transforming trauma. Some component of trauma may be subtly present in all deaths,
but it is often vividly so when a loved one has died suddenly, and especially by suicide,
homicide, or fatal accident. It is important to note that by trauma, we are referring to the
clinical syndrome of PTSD, whether it is present at a syndromal or subsyndromal level
in the individual. Bereavement-related PTSD includes clear evidence of more than just
emotional upset at the loss. Clients who are traumatized show signs of intense autonomic
arousal (difficulty sleeping, irritability, etc.), report psychological and physical experiences
of reliving the trauma, and make efforts to avoid being triggered back into reliving this
flashback experience because of its horrifying or terrifying nature. For example, a person
who has lost a loved one to suicide may report having intrusive and horrific images of
their loved one hanging by a noose, and they may be unable to control when or where
these images arise. Consequently the person may avoid going into a room where the
suicide happened precisely to avoid having these images evoked. It is also important to
recognize that the mourner does not need to have been an eyewitness to the death scene
to develop traumatizing images of the sights and sounds involved in the dying process
of their loved one.
Specialized experiential and exposure-based therapeutic techniques that involve slow
and systematic retelling of the loss narrative in the presence of compassionate witnessing,
sometimes aided by procedures such as eye movement desensitization reprocessing
(Shapiro & Forrest, 2004) to facilitate mastery of troubling imagery and emotion, can
usefully supplement a focus on separation distress in such cases.
Changing behavior. Confronting the death of a loved one can be immobilizing and
pose myriad social, personal, and occupational obstacles to engaging our changed lives.
Techniques such as behavioral activation can help counteract depressive shutdown, just
as assertion skills can be useful in constructing boundaries and bridges with people in
our social worlds. Devising action plans for balancing attention to internal and external
realities and managing predictably difficult times can help restore some sense of behavioral
competence when it is sorely needed.
Restructuring cognitions. Catastrophic thinking about the loss can promote
helplessness, which can be gently disputed and restructured through the use of cognitive
therapy procedures. This work can usefully be pursued at the level of clients’ surface-
level automatic thoughts or at the level of deeper schemas bearing on their sense of
lovability, abandonment, or justice that are activated by the loved one’s death. Clinical
experience seems to confirm the truism that each loss that we experience reverberates in
one way or another with previous losses. Likewise, catastrophic losses seem to reactivate
for mourners their deepest concerns about themselves and their world, issues that often
have their foundation in developmentally earlier schemas about the self and the world
(Kauffman, 2002a).
Finding meaning. For clients struggling to make sense of the loss or their lives in the
wake of it, a wide variety of techniques can be of assistance. These techniques include
various forms of directed journaling to enhance meaning making and benefit finding; use
of loss characterizations to explore their postbereavement identities; metaphorical and
spiritual interventions; and numerous forms of narrative work that document, validate,
and extend the literal and symbolic stories of clients’ lives and losses.
Integrating the arts. Literal language often fails to convey the deep emotional
significance of loss, as well as the prospect of lasting love and transformation. Expressive
arts therapies can help fill this void, using photography, montage, music, sand tray,
memorial work, poetry, or creative intermodal approaches that combine several of these
methods.
Renewing the bond. At the heart of bereavement distress is the yearning to reaffirm
or reconstruct the bond with the loved one that has been challenged by death. Practices
of introducing the deceased to others through our stories about them, using guided
imagery to invoke their ongoing presence in our lives, fostering deeply meaningful
symbolic conversations with them using letter writing or an empty chair, and pursuing
their legacies in our lives in both words and photographs help repair and restore such
bonds in sustainable form.
Revising goals. Profound losses portend change, as we relinquish or redefine goals
previously linked to the loved one’s physical presence in our lives, and project ourselves
into an altered future. A variety of procedures for goal-setting can assist us in this process,
whether at the broad level of envisioning a changed self or at the specific level of how we
will engage in self-care or confront a particularly difficult circumstance, such as getting
through the holidays.
Grieving with others. The death of another can isolate us, mark us as different,
disrupt the usual way in which we connect with others in the family, workplace, or
broader social world. For this reason, the careful cultivation of communication with
others in the home, a support group, or work setting is as important as securing personal
time for reflection and renewal. Techniques to facilitate this communication include
tools for soliciting different forms of instrumental and emotional support, negotiating
when to talk with a partner about a shared loss and when not to, creative therapeutic
games to facilitate disclosure and sharing with children, and workplace study circles that
help reintegrate a bereaved employee. Importantly, virtual, Internet-based resources,
and computer-mediated communication with others who have suffered similar loss can
extend communities of concern beyond those we can access in person.
Activism and transforming the negative into the positive. For some mourners,
comfort and meaning in a loss can be found in becoming active in efforts to make
something positive or redemptive emerge from the death. One common form of this
activism is trying to help others who have suffered a similar loss or working to prevent
others from having to go through a similar experience. Examples might include raising
funds to help prevent the type of cancer that ended the life of a loved one, working to
prevent the violence and homicide that led to the death of the loved one, or becoming a
facilitator of a bereavement support group for people who have experienced the suicide
of another.
Ritualizing transition. Finally, it is often helpful to mark our healing journey
symbolically, constructing private or communal ceremonies of transition or inclusion,
commemorating significant days or events, identifying linking objects, and placing our
personal suffering in broader frames of significance. Practices such as launching memory
boats, tracing a labyrinth or grief spiral, or joining a barefoot walkabout can promote
these ends.
Evidence-Based Practice in Grief Therapy
The last decade has witnessed a spirited (and sometimes contentious) debate within
thanatology regarding the efficacy of grief counseling (Jordan & Neimeyer, 2003; Larson
& Hoyt, 2007). Recent reviews of bereavement interventions for both adults (Currier,
Holland, & Neimeyer, 2008) and children (Currier, Holland, & Neimeyer, 2007) call
into question the practice of routinely offering therapy to all bereaved people, as those
who are left untreated ultimately improve to similar levels. Such findings underscore
the considerable resilience of many people in the face of loss (Bonanno, 2004), and
suggest that an appropriate stance of thanatologists would be to study the everyday
competencies that permit people to surmount loss, rather than presume that therapy
is a universally applicable response to ordinary life transitions. However, the same
research also documents that therapy is indeed measurably effective in mitigating the
suffering of at-risk groups suffering traumatic loss (e.g., the death of a child or violent
death bereavement) and is particularly efficacious when it is offered to those persons
with clinically significant symptomatology (e.g., complicated grief, depression or anxiety
disorders) (Neimeyer & Currier, 2009). Thus, there is evidence that grief therapy can
provide much to those who most need it. Our optimism about the field of grief counseling
is reinforced by the burgeoning collaboration between clinicians and researchers in
developing and documenting new models of treatment that are demonstrably effective
in randomized controlled studies (Sandler et al., 2005). In this closing section we will
discuss five such approaches that draw on many of the models and methods reviewed
earlier in this chapter.
Complicated grief therapy (CGT). One research-informed model of treatment has
been devised by Shear and her colleagues (Shear, Frank, Houch, & Reynolds, 2005),
which draws on the dual process model of Stroebe and Schut (1999) to both foster
accommodation to the loss and promote restoration of life goals and roles. The former
entails procedures for revisiting or retelling the story of the death in evocative detail,
while promoting cognitive and emotional mastery of the experience; engaging in imaginal
conversations to rework the attachment relationship to the deceased; and reviewing both
pleasant and troubling recollections related to the deceased to help the client consolidate
a more positive memory of their life together. In addition, in keeping with the restoration
focus of the DPM, clients review and revise life goals to align them with the changed
circumstance of their lives. Sixteen sessions of CGT was found to be far more effective
than interpersonal psychotherapy in alleviating complicated grief symptomatology,
although clients showed improvement in both conditions.
Cognitive behavior therapy (CBT). Likewise, Boelen and his associates (Boelen, de
Keijser, van den Hout, & van den Bout, 2007) drew on a cognitive-behavioral model of
complicated grief to formulate a two-phase treatment featuring cognitive restructuring
and sustained exposure exercises. Cognitive interventions used familiar procedures to
identify, challenge, and change negative automatic thoughts in the course of grieving.
Exposure treatment entailed inviting clients to tell the story of their loss in detail followed
by a homework assignment to write down all of the internal and external stimuli—
ranging from specific memories to people and places—that they have tended to avoid,
and used the results to construct a hierarchy of situations that were confronted imaginally
and behaviorally in the remaining sessions. Results indicate that 12 sessions of treatment
in the cognitive-behavioral conditions outperformed a supportive condition, and that
exposure interventions were especially effective in ameliorating grief symptomatology. A
recent meta-analysis of the literature on interventions using similar CBT methods supports
their general efficacy, although it is unclear whether they are more effective than other
existing therapies when investigator allegiance is taken into account (Currier, Holland, &
Neimeyer, 2010).
Meaning-making approaches. Recently, Lichtenthal and Cruess (2010) studied
a narrative intervention for bereavement, drawing on meaning-oriented models that
emphasize the role of sense making and benefit finding in the wake of loss (Neimeyer, van
Dyke, & Pennebaker, 2009). Randomizing participants to 1 of 4 conditions—emotional
disclosure (ED), sense making (SM), benefit finding (BF), or a control (CC) condition—
they requested that bereaved participants write for three, 20-minute sessions over the
course of a week about either their deepest thoughts and emotions related to their loss
(ED), making sense of the event by exploring its causes and place in their lives (SM), any
positive life changes that came about as a result of their loss experience (BF), or simply the
room in which they were seated (CC). They found evidence that writing about the loss
experience was more efficacious in reducing grief 3 months postintervention than writing
about a neutral topic. The novel BF meaning-making intervention appeared especially
beneficial. Significant treatment effects on depressive and PTSD symptoms also emerged,
especially among those in the BF condition. An additional randomized controlled trial of
an Internet-mediated writing therapy featuring prompts for perspective taking regarding
the loss reinforces these general conclusions (Wagner, Knaevelsrud, & Maercker, 2006).
Family-focused grief therapy (FFGT). Kissane and his associates have devised a
family-focused intervention, practiced as a brief four- to eight-session intervention for
distressed relatives of patients receiving end-stage treatment in palliative care settings
(Kissane & Bloch, 2002). As an alternative to the individualistic orientation of the
other research-tested therapies described above, theirs is based on an assessment of
family functioning, defined in terms of members’ self-reported levels of cohesiveness,
expressiveness, and capacity to deal with conflict. Importantly, Kissane and his colleagues
offered professional therapy only to those families whose family processes placed them at
risk for poor bereavement outcomes; supportive families that enjoyed high cohesion and
conflict-resolving families that dealt with problems through effective communication were
judged as inappropriate for intervention. Therapy concentrated on telling the story of the
illness and related grief while enhancing communication and conflict resolution. Although
a randomized comparison of FFGT with treatment as usual produced equivocal effects,
significantly greater improvement in general distress and depression, though not social
adjustment, was shown by the 10% of FFGT-treated family members who were most
troubled at the outset of treatment. Importantly, members of sullen families characterized
by muted anger and a desire for help showed the most improvement in depression as a
result of FFGT. In contrast, hostile families marked by high conflict actually did worse in
FFGT than in the control condition (Kissane et al., 2006). Results therefore suggest the
utility of family-level bereavement intervention, but only when discretion is exercised
in the recruitment of those most likely to benefit (highly distressed and sullen families)
and to avoid offering treatment to those who would fare as well or better without it
(functional and hostile families).
The Family Bereavement Program (FBP). Finally, in what is perhaps the best designed
example of a theory driven and evidence-based bereavement intervention, Sandler and
his colleagues have developed the Family Bereavement Program (Sandler et al., 2003;
Sandler et al., 2008). Building on the idea of reducing known risk and strengthening
known protective factors for parentally bereaved children, the program provides parallel
group experiences for children or adolescents and their parents that increase positive
interactions, increase active coping behaviors, and decrease negative appraisals of the
loss and the inhibition of bereavement-related emotional expression. To their credit,
Sandler and his colleagues have meticulously studied the impact of the intervention using
a randomized control trial design coupled with longitudinal follow-up and have found
positive program effects as far out as 6 years after treatment (Sandler et al., 2010).
The researchers have also begun a pioneering effort to translate the research findings
and intervention into real world clinical settings where this evidence-based program can
be adapted for use in a variety of organizations providing services to bereaved families
(Ayers, Kondo, & Sandler, 2011).
In summary, a variety of experiential, cognitive-behavioral, narrative, and family-
focused methods are being developed and have been found to hold promise in the
treatment of bereavement-related distress. Prominent features of these demonstrably
effective treatments include (a) their grounding in contemporary, research-informed
models of grief; (b) their tendency to screen for significant levels of distress or complicated
grief as a criterion for treatment; (c) inclusion of oral or written retelling of the loss
experience, often in evocative detail; (d) the learning of adaptive coping skills to help
the mourner live in the changed, postloss world; and (e) typically the prompting of some
form of meaning making, in the form of consolidation of positive memories, cognitive
restructuring of fatalistic thoughts, integration of the loss into one’s self-narrative, or
finding of unsought benefits in terms of personal growth, reordered life priorities, and the
like. Our hope is that such factors, in combination with the novel procedures featured in
some of the therapies (e.g., directed imaginal dialogues with the deceased or writing of
letters to the loved one or to hypothetical others who have experienced a similar loss),
may represent the formation of a new wave of more sophisticated, evidenced-based, and
effective interventions for bereavement-related distress. We believe they will continue to
inspire experimentation with new models and methods in order to enrich and deepen the
scope of grief counseling in the years to come.
239
Chapter 24
Life Span Issues and Assessment and

Intervention
David A. Crenshaw
Sound intervention strategies need to be based on a careful assessment of developmental

and life span issues in children and adults. To be effective, intervention requires the
evaluator to forego all preconceived notions of what the child or adult need but rather to
assess the intervention needs of this particular child or adult at this specific point in time
in the context of current life circumstances.
A key question guiding assessment at all stages of the lifecycle is whether grief is
proceeding along a healthy path or whether it is taking a pathological turn that requires
professional assistance. In the former instance, professional intervention is typically not
needed as individuals and families turn to their family, friends, spiritual advisors, and the
community for support. In the latter case, it is crucial to assess whether the grief has
developed into complicated bereavement or even traumatic grief or has led to clinical
symptoms of depression or anxiety or posttraumatic stress syndrome (PTSD) (for a
thorough discussion of assessment issues in the case of traumatic grief in children see Balk
& Corr, 2009; Cohen, Mannarino, & Deblinger, 2006; Doka & Tucci, 2008; Webb, 2010).
An important issue to be explored at any stage of life is the meaning of death for
an individual. Children, particularly during adolescence, as well as adults can struggle
intensely to reconcile death as a natural part of life, and the meaning of a particular death
also needs to be understood in each individual case (Langs, 2004).
In recent research greater emphasis has been placed on resilient trajectories following
extreme adverse events including death and losses taking many forms in both children
and adults (Bonanno, 2012). A resilience trajectory was defined by Bonanno (2012) as
a relatively stable pattern of adjustment over time in spite of experiencing an extreme
adversity. These resilient outcomes are far more common than originally thought and
provide a cogent reminder of the pitfalls of pathologizing and underestimating the
resilient spirit and remarkable capacity for repair in human beings.
Assessment
Issues for Children
Children vary in their concepts of death and in their abilities to undertake grief work.
Research suggests that if children experience the death of a parent prior to age 5, it is
more likely to be traumatic due to their inadequate cognitive and emotional resources
to handle a loss of such magnitude (Lieberman, Compton, Van Horn, & Ghosh Ippen,
2003). It should not be assumed, however, that this outcome will always be the case.
Rather the assessment should be based on a thorough developmental evaluation of the
child with generous input from parents, teachers, day care providers, or other caregivers.
A child whose developmental progress has been halted or derailed as a result of
a death of a family member or other important person may require professional
intervention. A starting point is to do a developmental history with input from family,
school, and other caregivers. Important background data can be gathered by a counselor
well-versed in developmental assessment of young children. Counselors who are trained
in doing developmental play assessments with young children can gather important data
regarding cognitive, as well as emotional and behavioral functioning by direct observation
of the child’s spontaneous play. The child’s response to directives from the therapist to
engage in structured play tasks can expand the observational data such as using the
puppets create a story about a puppy who is sad or they may be asked to do an individual
play genogram developed by Eliana Gil (Gil, 2003), or the magic key projective fantasy
drawing (Crenshaw, 2008).
Changes in the child’s functioning immediately following a death are expected but if
problems persist and developmental progress is impeded intervention may be indicated.
School-age children will be able to collaborate more fully in the assessment process due
to their greater verbal facility and cognitive skills but input from the family and school will
still be essential since children may not be fully aware of some of the psychological and
behavioral changes observed by adults after a death.
Adolescent Issues
Teens typically have more cognitive and emotional resources to understand death and
to grieve the death of someone important to them, but they are also at a vulnerable
age, particularly if the loss was preceded by attachment insecurity in the adolescent
(Fagundes, Diamond, & Allen, 2012). If the life of someone important, particularly a
peer, is snuffed out at the time they are beginning to claim a life and identity of their
own, the emotional impact can be devastating. It can cause anxiety, insecurity, and fear
of taking risks. Changes in adolescents following a death may take the form of acting-out
behaviors such as increased alcohol or illicit drug use, reckless behavior such as unsafe
driving, or engaging in unsafe sex. This type of response is particularly likely with boys
but occurs in girls as well. Adolescent girls are at increased risk of symptoms of anxiety
and depression or other symptoms of internalizing disorders that include eating disorders
or self-harming behaviors (Little, Sandler, Wolchik, Tein, & Ayers, 2009). Balk (2011a)
Life Span Issues and Assessment and Intervention 241
identified adolescent cores issues related to bereavement during three stages: (1) early
adolescence, (2) middle adolescence, and (3) late adolescence. Balk also described the
regrief phenomenon in adolescence whereby grief is revisited as development proceeds
and emotional reminders of a previous loss triggers a new wave of grieving.
Young and Middle-Age Adults
In adult life significant changes or disruptions in family and social relationships subsequent
to the death of a relative or close friend would signal a need for further assessment
and possibly intervention. Increased alcohol use, abuse of prescription or illicit drugs,
dramatic deterioration in professional or occupational performance would be important
indicators of the need for more careful exploration along with the more obvious signs
of clinically significant degrees of anxiety and depression. An important study of college
students found that avoidant emotional coping style predicted complicated grief and
severity of PTSD symptoms following a traumatic loss (Schnider, Elhai, & Gray, 2007).
This study supported the long-held belief that facilitating emotional expressions of grief
in counseling leads to healthier outcomes than achieved by persons who cope by avoiding
the expression of emotional responses.
Issues for the Elderly
The elderly command a special concern. Close and meaningful attachments are a crucial
buffering and protective factor in the lives of people at any age but become especially
critical in the elderly. When important ties are disrupted by death, the emotional devastation
in an elderly person may be compounded by other stressors such as economic strain,
poor health, loneliness, or other prior losses. The incidence and prevalence of depressive
symptoms and suicide risk increase, with advancing age (Bahr & Brown, 2012).
The risk of suicide needs to be carefully considered at any stage of life in the face of a
devastating loss, but it becomes especially important to evaluate in the case of the elderly,
especially if they live alone, are in poor health, suffer from ego despair, or manifest other
risk factors such as alcohol abuse. The presence of clinical depression or any prior history
of mood disorder or suicidal ideation or attempts would be further indicators of risk and
need for careful assessment by a licensed mental health professional.
Important ethical issues arise if technological advancements allow us to extend life
but in the process we strip the elderly of their humanity and dignity (see Kastenbaum,
2004a, 2004b for a fuller discussion of these issues).
Interventions
Four forms of interventions will be described as they relate to life span issues: (1) death
education; (2) bereavement support; (3) individual, family or group counseling; and (4)
professional caregiver support.
Death Education
In societies where death is treated as a taboo or unmentionable topic, death education
plays a crucial role in preparing children especially for the possible deaths they will face
as they advance through childhood, including the death of pets, perhaps grandparents,
other relatives, in some cases a friend or perhaps a teacher. Becker (1973) delineated
the many ways in which people avoid awareness of death. Becker viewed this denial as
emotionally detrimental in that people unable to confront the fact of their own mortality
are unable to appreciate life and live fully. Parents should be encouraged to fully utilize
opportunities afforded to teach toddlers about death by capitalizing on their natural
curiosity. They often ask questions about dead insects or birds, and they can be helped to
see that death is a natural part of life and as basic to all living things as birth and growing
older. Toddlers should be given simple and direct explanations in response to questions
about death. The death of a family pet affords an opportunity, although painful, for
children to learn in a natural way about death. Children in the age range of 3 to 6 will
need help to differentiate the true versus the fantasy causes of events, especially the
painful ones in their lives.
School-age children and adolescents should feel free to approach the trusted adults
in their lives when they have questions about the mysteries of death. It is not uncommon
that children go through phases of fear of death. As they continue to advance in their
cognitive and emotional development they began at around age 9 to understand death
in a more complex way. They begin to understand that death is not reversible, that it is
inevitable and universal. These abstract concepts are hard for younger children to grasp
because they have a limited capacity for abstract thought and concepts. It is not just
children and adolescents who shy away from discussing death.
It is astounding that even in the current age when so many other taboos have
vanished there are plenty of adults who do not feel comfortable talking about death.
Death for many adults is a subject to be tucked away and visited only when forced to
by circumstances beyond their control. There is still great potential for increasing the
coping capacities of children and adults throughout the life span for handling death by
expanding our educational efforts not only through formal death education courses but
in parent and teacher training.
Bereavement Support
Throughout the life span the primary intervention for most bereaved children, adults
and families is some form of bereavement support. The majority will receive this support
from their families; church, synagogue, or mosque; their school; or the larger community.
Young children will primarily receive it from their families although the parents may seek
advice from their religious advisers or counselors as to help children through the grieving
process. Older children and adolescents often receive support from school counselors and
in the case of sudden or traumatic death many schools have organized crisis support teams
to offer counseling immediately after the death to those who are affected. Resources
for adults and the elderly are available often through support groups organized within
the community by church organizations, the bereavement support programs offered by
hospice, or the local mental health association. Often support groups are available for
Life Span Issues and Assessment and Intervention 243
children and adults of various ages and also by the type of death. Suicide survivor groups,
and groups for parents who have lost children, or for surviving siblings are available
depending on the size of the community. A good example of a community support for
survivors of traumatic death is Bo’s Place in Houston (Walijarvi, Weiss, & Weinman,
2012). Bo’s Place is an 8-week, curriculum-based traumatic death support group program
to help family members who have experienced a death in the family by suicide, murder,
accident, or sudden medical problem.
Individual, Group, or Family Bereavement Counseling
While most bereaved do not need or seek professional counseling there are circumstances
that may require such intervention that can take the form of either individual, group,
or family counseling conducted by a mental health professional and/or certified grief
counselor. Sudden and traumatic deaths are prime examples of the types of bereavement
that may in some cases require professional intervention. While such an event would be
stressful at any point in the life span they exert a particular toll on children, adolescents,
and the elderly. Children are vulnerable because their development is still in progress
and they may lack adequate cognitive, emotional, and social resources for coping with
such a stressful event and may result in developmental arrest in one or more domains.
Groundbreaking work by Cohen, Mannarino, & Deblinger (2006) led to an empirically
derived treatment model that addresses childhood traumatic grief (CTG). Childhood
traumatic grief is defined as a condition in which the trauma symptoms interfere with
the child’s ability to undertake the normal grieving process. The CTG treatment program
addresses both trauma and grief symptoms and includes a parental treatment component.
Bereaved children tend to be more amenable to less invasive treatment interventions that
include therapeutic play, narratives, metaphors, symbol work, drawing, and storytelling
strategies (Crenshaw, 2005; Crenshaw, 2008).
As mentioned in the assessment section, adolescents may require professional
intervention depending on the circumstances of the death and many other variables
including their prior loss history, preexisting psychiatric conditions, and their developmental
vulnerability related to their need to move away emotionally from their families and begin
the process of making a life and a separate identity. Sudden death can shatter the life
assumptions of the bereaved at any stage of the lifecycle but the blow suffered to the
adolescent’s sense of omnipotence and invulnerability is particularly shocking.
Adults are not exempt from traumatic or complicated reactions to death that under
such circumstances may require professional counseling intervention or treatment by a
licensed mental health professional. Young adults who are most likely to be faced with
the death of a young child are particularly at risk because this loss may be the most
stressful bereavement of all. A child facing the death of a parent or a parent confronting
the death of a young child represent some of the most anguishing and heartbreaking
of all human experiences. Adult bereavement can be complicated in the case not only
of traumatic death but when the relationship of the bereaved and deceased person
was highly conflicted or highly dependent (insecure attachment). In the later case, the
bereaved adult may suffer a loss of identity as well as anxiety and depression.
The loss of loved ones, which is a universal human experience, increases in frequency
as we age, along with the decline in physical vigor and increased poor health. Since
social isolation is a concern for the elderly bereaved, group and community support are a
helpful adjunct to any individual counseling. The involvement of other family members in
the counseling may strengthen the social support network available to the griever.
Professional Caregiver Issues
Caregivers and professional counselors face their own inevitable losses, and it is necessary
that they adequately attend to their own grief issues in order to be effective in providing
bereavement support and counseling to others. As caregivers and counselors go through
life the number of losses in both their personal and professional lives accumulates and
the distance to their own death diminishes. This realization may make it hard to hear the
continuing sad stories of the bereaved, especially the horror narratives of the traumatically
bereaved. It is imperative that professional counselors and caregivers counterbalance the
inherent stress of work with the bereaved by providing adequate care and consideration
to themselves. (See chapter 40 in this handbook.)
The caring and support of family is a crucial balancing force, along with healthy
lifestyle habits of regular exercise, adequate nutrition, engaging hobbies, as well as
sufficient rest and relaxation. In addition the support of colleagues and the availability
of supervision or consultation with more experienced colleagues are essential. When
counselors are working with families who have experienced the heartrending death of a
child or traumatic death of any nature it may create anxiety in the counselors since it can
heighten their own since of vulnerability. Trauma tends to shatter beliefs and assumptions
that the world is a safe place and counselors are not exempt. In the wake of major
disasters or terrorist attacks, counselors will be particularly challenged for they will have
the same concerns for their own safety and the safety of their families at a time when
they are attempting to make themselves emotionally available to their clients. It would be
especially critical in disaster work for the counselors and caregivers to attend to their own
sense of woundedness and to draw on the support of their team of colleagues. No one
should do this work as a lone ranger.
245
Chapter 25
Assessment and Intervention in

the Family and Larger Systems
Jennifer L. Matheson
Grief and loss can impact not only the individual but an entire family system as well as
larger systems such as neighborhoods, communities, schools, businesses, and countries.
Recent national and international disasters such as school shootings, war, and natural
disasters like hurricanes, tsunamis, floods, and earthquakes have brought to light the
importance of grief assessment and interventions on a larger scale.
The experience of family or group grief has similarities and differences to grief
experienced by an individual. Clinicians have found that in some ways, group grief can
create an environment for additional support and a sense of belonging but can also
complicate the bereavement process as individuals grieve in different ways and go through
different processes. Walsh and McGoldrick (2004) have endorsed a systemic approach
to family grief that understands “the chain of influences that reverberate throughout
the family network of relationships, including partners, parents, children, siblings, and
extended kin” (p. 6). Others agree that grief occurs in two areas at the same time:
the individual level and social or interpersonal level (Cook & Dworkin, 1992). Therapists
may be called to help with families or larger systems such as communities that have
experienced traumatic loss. Regardless, therapists who are comfortable using an eclectic
approach to treatment and intervention will likely find the best results (Lattanzi-Licht &
Doka, 2003). Increasingly in recent years, experts in the area of family bereavement have
also depended on strength-based, competency-based, and resiliency approaches as a key
element to effective intervention and treatment (Hemmings, 2005).
Research suggests that not all people and groups who have experienced significant
grief pursue treatment for symptoms. Those with normative patterns of grief rarely feel
the need for formalized treatment, though they may explore the types of support that are
available in their communities. When grief is complicated by other stressors, however, it is
often the job of clinicians to assess for grief-related problems and provide interventions to
relieve chronic or acute symptoms. The needs of the family or the group are crucial, and
interventions aimed at the whole family or larger system often depend on an accurate
assessment of clinical need. While many assessments are available for individuals, few
have been designed explicitly for families and large groups.
General Considerations of Assessing and Treating
Families and Larger Systems
There are general, overarching issues that should be explored when planning or executing
an intervention for families or larger systems dealing with grief and loss. The first key
issue is the meaning a family or community makes of the loss event. Nadeau (1998)
identified factors that can enhance or inhibit the process of family meaning making. Some
enhancers are family rituals, the frequency of contact among members, and openness of
members to share their meaning. On the other hand, things that can inhibit the process
include secrets, incompatible beliefs, and the level of fragility of relationships in the family.
Regardless of the intervention, it is important to incorporate ways to help people explore
meaning making at different points in their coping process and allow for wide variations
in the meaning people make of a loss event.
In addition to meaning making, those who assess for grief symptoms and provide
interventions for families and larger systems should consider all manner of diversity such
as gender and cultural differences. Researchers have noted that currently embraced
interventions may fall short of addressing the varied needs of all bereaved people because
of the limited populations who have been studied in the past (Breen & O’Connor, 2011).
While there is some evidence to suggest that, in general, men may cope with bereavement
better than women, research suggests that gender differences in bereavement outcomes
are few and small (Hayslip, Allen, & McCoy-Roberts, 2001). Of the few studies that show
any differences, one study indicated that women may prefer individual, couple, or family
therapy or support groups, whereas men may benefit more from talking with friends
and families (Rich, 2000). Women may be more confrontive and expressive in their grief
than men (Stroebe, 2001). Another publication suggested that women’s grief in general
has more of an intuitive pattern where men’s is instrumental, but that a better model is
to weave both into a comprehensive model that addresses both types (Martin & Doka,
2000). Overall, having some sensitivity to the needs of clients based on individual gender
differences may be helpful to improving assessment and treatment outcomes.
Finally, and equally important, the cultural and spiritual makeup of a family
or community should be considered when planning an intervention. While some
elements of grief are nearly universal, people from different religions, ethnic, or cultural
backgrounds may have different ways of experiencing, expressing, and ritualizing loss
events. Developing sensitivity to these differences can help those who assess and treat
loss symptoms. In addition, respecting the individuality of families and communities
by including them in the planning of any interventions is a good way to ensure their
particular religious or cultural needs will be met.
Assessment and Intervention in the Family and Larger Systems 247
Theories That Guide the Assessment and

Treatment of Grief in Families and Larger Systems
For individuals, families, and communities, the process of bereavement can be understood
from a wide range of theories that incorporate issues of attachment, coping, and loss
(Williams, Zinner, & Ellis, 1999). One theory that may help guide the assessment and
treatment of grief symptoms in families and larger systems is family systems theory.
This theory encompasses a broad set of interventions used to treat families and larger
systems in general and can be applied to the assessment and treatment of groups of
people experiencing significant loss and grief. According to Nichols and Schwartz (1998),
“Working with the whole system means not only considering all the members of the
family, but also taking into account the personal dimensions of their experience” (p. 8).
Therapists who are trained in family systems theory are often trained to use an eclectic
approach that may include a number of key models of therapy. These models include
Cognitive-Behavioral Family Therapy, Structural Family Therapy, Narrative Therapy,
Internal Family Systems, Solution-Focused Brief Therapy, Psychoanalytic Family Therapy,
or Experiential Family Therapy. These models are often paired with the available models
of treatment for bereavement to treat grief in families and groups. Regardless of the
clinician’s theory of choice, however, how a family or group experiences grief will depend
on their individual, family, social, cultural, and spiritual context (Stokes, 2005). These
contextual issues also must be included in any thorough assessment and may serve as
either resources or stressors that must be considered in treatment.
Bowlby’s attachment theory is another that often underlies interventions for bereaved
families and larger systems. According to Stroebe, Schut, and Boerner (2010), “A basic
theme of the theory is that persons who have experienced (lack of) dependability and
consequent (in) security in their early childhood relationships will subsequently remain
influenced by this in forming, maintaining and—importantly here—relinquishing
relationships” (p. 260). One example of a bereavement theory based in attachment theory
is that of continuing bonds. The developers of the theory of continuing bonds, Klass,
Silverman, and Nickman (1996), were among the first scholars to question psychoanalytic
beliefs that the bereaved should relinquish their ties to the deceased person for maximum
adaptation (Stroebe et al.).
Most of the theories that address grief and loss at a larger systems level deal with
tragic or traumatic losses that larger groups experience together. This larger systems level
may be church communities, workplaces, neighborhoods, communities, states, or entire
countries. Many of the theories on grief that exist for individuals can be applied to larger
systems as well. In general, trauma theory is prevalent in helping people understand what
happens when a community or larger system grieves, mostly because community grief
usually follows a tragedy or traumatic event. Most people who experience a larger systems
level loss are resilient, though many may have both acute and long-term stress reactions
(Williams et al., 1999). Learned helplessness is often replaced by learned resourcefulness
(i.e., Antonovsky, 1990). According to Antonovsky, the community has found a way
to make sense of the event with the help of targeted interventions that help make the
event manageable and make resources available for recovery. The theory suggests that
these communities heal also because they find meaning by reframing the event as a
challenge. Regardless of the theory used, most use Miller’s and Steinberg’s (1975) long-
standing notion of community grief that specifies, “having options, a plan of action, or a
knowledge of how to cope gives strength to an otherwise traumatized community” (in
Williams, et al., 1999. p. 14).
Assessment of Needs
Few formal assessment instruments exist to measure the severity of grief being
experienced by families and larger systems. When families present with grief or
bereavement, therapists can encourage parents to invite children to the session as long
as the information will not be too sensitive or complex to discuss in front of children
(Hemmings, 2005). According to Stokes (2005), assessment provides “clarity and an
understanding of how individuals within the family are experiencing the bereavement”
(p. 29). Stokes adds that the assessment should aim to establish the impact of the
death for this family at this time living in this community. Other determinants of grief
that should be assessed include: who the person was in relation to them, the nature of
the attachment, strength of the attachment, security of the attachment, ambivalence
of the relationship, conflicts with the deceased, mode of death, historical antecedents,
personality variables, social variables, rituals, and concurrent stressors (Parkes & Weiss,
1983). Stokes also suggests beginning with a genogram that has a number of advantages
in a bereavement assessment including recording who is in a family, previous losses, past
coping strategies, and key family transitions that may have an impact on bereavement.
Assessing both the risk factors of a family and the elements of resilience are important.
It is important when children are present in a family to include them in the assessment,
but to use activities and language at a level they can comprehend. After the assessment
phase is complete, therapists should be prepared to recommend family work, individual
work, or a combination of both. Being explicit with families about what the therapist
notices as areas needing attention, and providing some information about what specific
interventions may be used, can help families feel safer and more grounded in treatment.
For larger systems, a few key questions can help guide the assessment of need for
grief and bereavement services (Williams et al., 1999). Those questions include,
• What is the community’s history of similar losses?
• What is the community history in general?
• What is the nature of the losses experienced by this community?
• To what extent was the event normalized?
• To what extent does the community have the support it needs?
• What are the cultural practices, beliefs, rituals, and customs that can help or
interfere with healing?
• In what ways has the community found meaning in the event?

These questions can help determine what interventions would be most effective in
any given community at any given point in time.
Family Interventions
There is a wide range of interventions that can work with families who are grieving. These
techniques come not only from the family therapy field but from psychology, social work,
counseling, pastoral counseling, and other fields of mental and spiritual health disciplines.
Some of these approaches would fall under the category of family support, especially in
cases where the grief and loss issues are less complicated, whereas family therapy would
be indicated in situations where the symptoms of grief are beyond what is usual and
expected or when grief is complicated by other factors.
One program that has been found to be effective is called the family bereavement
program (FBP) (Sandler, Ma, Tein, Ayers, Wolchik, Kennedy, & Millsap, 2010). The FBP
incorporates separate groups for various members of a family: children, teens, and adult
caregivers. The program’s aim is to change risk and protective factors for bereaved
children (Sandler, Ayers, Wolchik, Tein, Kwok, Haine, et al., 2003). Researchers describe
the FBP as a cost-effective and brief model for highly stressed families whose parents
learned to sustain their learned behaviors of emotional warmth and positive discipline
with their children after a parental loss event (Hagan, Tein, Sandler, Wolchik, Ayers, &
Luecken, 2012).
Family support from caring peers and professionals is undoubtedly an important part
of healing from loss. Family support is indicated in cases when symptoms and experiences
of grief and loss are considered within a normative range during assessment or if families
choose this form of intervention. National organizations have formed grief centers solely
for the purpose of providing grief support and aftercare to individuals and families. Some
of the most well-known and national organizations include The Compassionate Friends
and Partnership for Parents. In addition, other support groups are available through
smaller organizations such as local hospice programs, The Dougy Center, Growth House
Inc., GriefShare, SHARE Organization, MISS Foundation, Rainbows, and UNITE. The
Internet is an excellent resource to help families locate these organizations and groups
near their homes.
Besides interventions that follow a family systems perspective, family support for
grief and loss may come in the form of bibliotherapy (Briggs & Pehrsson, 2008; Goddard,
2011; Koehler, 2010). Bibliotherapy is the use of literature for therapeutic intervention
and has been used for decades to help people identify with characters or situations in the
hopes that it will lead to increased insight into their own situation. It can be used as a
form of or in conjunction with family therapy, or it can be used in a family support role.
Providing a list of books that are helpful for different types of families, a range of ages,
and a range of issues can be helpful. For some, reading in itself can be calming, relaxing,
and comforting. Fiction, nonfiction, plays, or poetry can be helpful and can be used
individually, between couples, or by entire families to create an atmosphere of support

and healing.
While family support is indicated for the majority of families who are coping with loss,
family therapy may be indicated for families who experience unresolved or complicated
grief. Experiential techniques have been combined with Family Systems Therapy by a
number of scholars as a way to bring people together around a common, pleasurable
task that has the capacity to increase enjoyment and decrease inhibitions (Gil, 1994).
These interventions have been used with families and larger systems, partly to make the
treatment of grief more relevant and inclusive of children (Hemmings, 2005). Treatment
providers who offer these forms of intervention during times of bereavement “emphasize
caring for all members of a family, including children” (DeSpelder & Strickland, 2005,
p. 365). Children often have more limited ability and interest in communicating solely
through verbal means. Besides providing a way to integrate children into the assessment
and treatment of family grief, family play therapy can be highly effective as a way for
individuals and groups to begin to heal from symptoms of grief.
Experiential Family Therapy is an eclectic grouping of theories and techniques that
emphasizes the here-and-now experience of clients with an emphasis on increasing
sensitivity and feeling expression (Nichols & Schwartz, 1998). Many experiential
family therapy techniques can be effectively applied to problems related to grief and
bereavement in families (Mason & Haselau, 2008). These techniques include activities
such as psychodrama; role playing; play therapy; and dance, music, and art therapies.
Research has shown that experiential methods such as sandplay are effective in the
reduction of complicated grief symptoms among families (Xu & Zang, 2011). These
techniques are useful because they access multiple parts of the human brain so that each
individual can experience the intervention from their own set of skills and needs. They
are flexible enough to be able to be used by multiple age groups or generations at the
same time.
Family play therapy is a related theory that can be used with families and larger
groups who are dealing with grief and loss issues. Eliana Gil and others (see Lowenstein
& Herlein, 2012) have written about the use of play therapy with families, extending the
work of classical play therapy with children to the family and larger system. One example
of a family play technique is the use of puppets to help families tell a story together,
assessing their process, interactions, and the content of the stories to help them work
through issues (Gil, 1994). The technique “stimulates communication and demonstrates
how a family mobilizes toward a goal or task” (p. 46). It helps put families at ease,
allows them to have fun, encourages them to be spontaneous, and can be used during
the assessment phase to examine family functioning. This technique also encourages
symbolic communication in that families can use it as a way to speak in code, especially
about difficult, painful, and sensitive topics that often exist in times of grief and loss.
Various forms of art therapy such as drawing a family tree, family portrait, or self-
portrait are useful in treating families with complicated grief symptoms. Sand tray
techniques where families can express their thoughts and feelings through the use of
miniatures may also be effective. Therapists can also help families create a memory jar or
box of items and stories that relate to their deceased loved one (Way & Bremner, 2005).
Games such as The Talking, Feeling, Doing Game as well as feeling cards (which clinicians
can make themselves with basic paper and markers) can be a fun and engaging way to
help families talk not only about their thoughts or behaviors, but their feelings as well.
Finally, some techniques are not only effective, but they are also very inexpensive and
require no specialized or costly materials and supplies. These techniques may include
storytelling activities and other drawing or writing tasks that only require paper and
markers, or pencils.
Regardless of the intervention, it is always important to remind clients about the
individual nature of grief and that family members can be both supportive during the
grief process and also create challenges for one another when the processes do not match
well in terms of type of things such as individual expressions of grief and length of time
grieving.
Larger Systems Interventions
Community grief is a complex process that may take months or years to fully resolve
(Williams et al., 1999). Community tragedies occur when one or more members of a group
die unexpectedly. These losses can involve many or few, but the larger the number of
people who die or are injured, the wider the impact on the community. Besides death and
injury, these tragedies can also include destruction to property, relocation, unemployment,
and short- and long-term health risks (Williams, et al.). The more unexpected the loss,
the more severe the grief and loss experience. These experiences can be an opportunity
for growth and bonding or an ongoing crisis for a community. Swift, targeted, caring
interventions are needed to help communities cope and recover.
The effective resolution of community grief is needed for the loss to become a reality
within the identity of the community. While it would be normal for some residual pain
to exist, the outcomes that come from effective community grief recovery can become a
shared history that evokes enhanced feelings of closeness and pride. Support groups for
communities and larger systems are available to help these large groups cope with losses.
Children’s programs are available through many of the above organizations, but also
through individual communities and schools (discussed more below). These programs
help children cope in a group setting in their own personal ways. Hospitals, churches,
community mental health, and other community-oriented organizations also often
develop grief support groups that are either ongoing or are developed in response to
particular community crises. Support groups exist all over the world and are easier to find
than ever, thanks to the Internet. Experts believe that in order for these types of centers
and groups to be most effective when a community or larger system is coping with
loss, these mechanisms should be in place prior to the loss event (Williams et al., 1999).
Procedures can be activated and followed through more effectively so as to help restore
community functioning as members heal.
In addition to group support, there has been a growing popularity of online Internet
resources for bereaved families and individuals such as Bereaved Families Online, griefnet.
org, caringinfo.org, Grief and Healing Discussion Page, Sidelines National Support
Network, and Grief Watch. While most experts agree that face-to-face treatment is
the foundation of grief therapy, the use of technology can decrease the literal space
between service providers and clients when necessary (Stubbs, 2005). It also allows for
interventions to occur on a larger scale when multiple lines are open and utilized at once.
Phone and email support for bereaved individuals and communities can be used from
the very earliest points of an intervention when geography or other logistics make it
impossible to be in the same location. When this service comes in the form of a phone
help line, it affords the potential client anonymity, control, immediacy, ease of contact,
and accessibility. Email support has been used since the early 1990s and offers many
of the same benefits as phone contact. Of course, these methods that do not have the
advantage of face-to-face contact have the obvious disadvantages of having neither
nonverbal cues nor the ability to see the expressions and hear the finer nuances of a
conversation.
Schools can be a crucial point of support for individual or groups of children who
have been bereaved, albeit at times inconsistent (Abdelnoor & Hollins, 2004). Silverman
and Worden (1992) reported that children who received support at home and at school
following the death of a parent had fewer problems than children who did not have
the school support. But staff and teachers often feel unprepared for how to respond to
bereaved children (Rowling, 2005). Short- and long-term interventions both inside and
outside of the classroom should be planned ahead of time. Schools should incorporate
training for teachers and administrators as well as form partnerships with outside agencies
and the families of the school’s students to prepare for present and future needs in the
area of grief and loss. Facilitators can be trained early in bereavement support so that
short-term interventions can be provided on the school grounds as soon as they are
needed. Schools may also benefit from asking the students for input on what they want
or need in the short- and long-term. Schools must be prepared for the long-term needs
of the students and staff, not only for the crisis intervention activities that are sometimes
needed.
In cases of community mourning complicated by issues such as trauma, violent
crime, and terrorism, there are a few models of intervention widely used with groups.
The most widely used and studied is called critical incident stress management (CISM)
(Everly & Mitchell, 1999). CISM has been cited as the standard of care for intervention
of crisis situations and originated as a treatment for police, paramedics, and firefighters
who provide assistance in emergencies (Gamino, 2003). While this approach has been
questioned for its lack of empirical evidence and for possible iatrogenic results (Gist
& Lubin, 1999; Litz, 2004), CISM remains a widely accepted form of treatment for
individuals and groups who have experienced a critical incident that overwhelms their
“usual coping mechanisms resulting in psychological distress and a disruption in adaptive
functioning” (Gamino, 2003, p. 125). CISM is a seven-component program of stress

management. Group members come together after a traumatic event and discuss what
happened to them, the thoughts and reactions they have had, and the symptoms they
are dealing with. Then they learn that many of their symptoms are normal and they are
not alone in facing them, and finally are given time to wrap up and develop a plan for any
needed future action. CISM interventionists are trained in precrisis preparation, individual
crisis intervention, large group demobilizations or informational briefings, critical incident
stress debriefing’ defusing, family/organizational consultation, and follow-up referral.
One meta-analysis of eight prior studies indicated that CISM was effective in providing
“comprehensive crisis response capabilities that cover the entire crisis spectrum from
precrisis planning through acute crisis and post crisis interventions” (Everly, Flanner, &
Eyler, 2002, p. 180). Another review of prior research on CISM found that it is “one
effective way to address the adverse psychological distress that may result from such
events. Although CISM interventions are sometimes thought to be only relevant to the
needs of emergency services personnel (Litz, Gray, & Adler, 2002), these CISM studies
document their efficacy with a variety of victims groups worldwide with significant
outcome domains such as improved safety, enhanced care, sustained productivity, and
dollar cost efficiencies. Most of these studies reported significant helpful outcomes…”
(Flannerly & Everly, 2004, p. 326).
For a shorter term intervention, one element of the CISM model is helpful. The
critical incident stress debriefing (CISD) can also be used with groups after a traumatic
event (Everly & Boyle, 1999). CISD is a structured group discussion of a crisis that lasts
somewhere between 1 and 3 hours and is implemented no less than 24 to 48 hours
after the incident occurred. This model is not therapy but instead is meant to help
achieve closure on the event, if possible. It also provides an opportunity to reach out
to people who otherwise might not attend a longer term intervention and to provide
needed information and referral sources. CISD has been found to be an effective crisis
intervention in one meta-analyis of five prior evaluation studies (Everly & Boyle).
Finally, Kalayjian’s (1996) seven-stage model of community healing may be helpful to
community leaders. It begins with a preassessment before the intervention is implemented
that includes exploring the dynamics of the community, to whom the event occurred,
who are the survivors, community preparedness, and what is the overall civic climate of
the community. They do an onsite assessment to determine community strengths and
weaknesses, resources, and motivation for change. Next the community’s response to the
event is evaluated and a plan for services is developed. The plan is implemented; then an
evaluation of the intervention is completed. To conclude, the community leaders modify
and reevaluate the intervention for possible changes when it is implemented again in the
future.
Conclusion
In the assessment and treatment of grief in families and larger systems, many techniques
can be effective and used in multiple contexts that embrace and honor the cultural,
spiritual, gender, and familial needs of the group and individual members. Regardless of
the intervention and how eclectic a therapist is in her or his interventions, the relationship
with the clinician continues to be thought to be one of the most important factors for
short- and long-term positive outcomes. This relationship must be filled with a sense of
trust and the notion that the therapist understands the individual’s and group’s issues in
order for treatment to be effective.
One benefit to doing family or larger systems therapy on issues of grief is that it
is less likely that the individuals will feel isolated and alone in their grief. Interventions
that involve whole families or whole groups enable people to embrace the individual
nature of grief and create a less isolated, lonely environment. On the other hand, the
complication present in treating families or groups who are experiencing significant grief
is that all members will grieve at their own pace and in their own way. Helping members
to honor the ways in which others grieve can be therapeutic for families and larger
groups. According to Thirsk and Moules (2012), “The timing of interventions needs to
be carefully contemplated, and decisions about what type of interventions are offered
should be reflective of what the family most needs at that time. Furthermore, if grief is
indeed a lifelong and life-changing experience, then the evaluation of whether or not
interventions are useful needs to take into account this longevity, and not only focus
on the immediate 1-2 years after the death or after the counseling. …Families can be
significant supports to each other not only before and after counseling, but they can
also be instrumental in achieving change and healing during counseling. …Grief is not
something that is escapable and thus as helping professionals, we have the obligation to
continue to challenge and question our practices to do the best by the families we serve”
(p. 120).
255
Chapter 26
Ethical and Legal Issues in

Jackson P. Rainer
To effectively address death from the perspective of ethical and legal issues in assessment
and intervention, attention must be given to end-of-life issues. As T.S. Eliot wrote, “…
the mind of God in me shows what it is time to move on to and what it is time to let
go of. What we call the beginning is often the end, and to make an end is to make a
beginning; the end is where we start from” (1936, p. 86). Advances in managing and
treating acute, life-threatening illnesses have led to greater longevity and have brought
a lengthening of the typical dying trajectory giving the individual a prolonged period of
disability. This change in dying and disability causes ethical and humane concern about
the prospect of longer, medicalized, and impersonal deaths. Individuals in contemporary
society are progressively more interested in a greater degree of self-determination in the
dying process. With the current health care crisis and the high cost of end-of-life care,
economics further confounds the proposition of self-determination.
The Centers for Disease Control and Prevention note that the average life expectancy
in developed countries, such as the United States, has risen to 78.5 years in 2009 (CDC,
2011). Gains continue to be made in the average life expectancy primarily because of
changes in the causes of death. Despite continued problems with the health care system
of the United States, advances in medicine and public health have led to the diminishment
of infectious disease as a primary cause of death. Now, degenerative diseases that occur
more frequently in adulthood, such as cancer, heart disease, and stroke, have emerged as
the leading causes of mortality. Progress has been made at a slower rate in the treatment
of these diseases, and current research involves more speculation about how the body
may be able to repair the damage it does to itself through malady and aging. Molecular
biology, genetics, and stem cell research hold great promise in significantly extending
average life expectancy, which baby boomers heartily embrace.
That being said, quality of life has emerged as important an issue as longevity. High-
profile cases, such as Karen Ann Quinlan (In re Quinlan, 1976), Nancy Beth Cruzan
(Cruzan v. Director, Missouri Department of Health, 1990), and most recently Terri
Schiavo (In re: the guardianship of Theresa Schiavo,1998) brought public attention to
the fact that medical technology has advanced to the point where it can sustain life
even when the individual is in a persistent state of unconsciousness with no hope of
recovery. In the recent past, Floridian Terri Schiavo’s case brought public attention to
the private matter of extension of life and definition of death. In 2003, the relatives of
Schiavo, a young woman who in 1990 suffered a brain injury and exhibited no further
cognitive function, had a serious dispute about her treatment that triggered actions by
officials of all three branches of Florida’s state government (Schindler v. Schiavo, 2003).
Her primary caregiver wished to remove her feeding tube in order for nature to take
its course. Advocates of her continued care rejected the argument that cessation of life
support, prohibited in all other situations, was acceptable when physical or cognitive
limits were defined as extreme.
In an earlier and similar case, the Quinlan decision allowed the parents, on their
daughter’s behalf, the authority to refuse unwanted medical treatment, in this case
mechanical ventilation. Even without this treatment, she lingered for another 8 years
while receiving artificial nutrition and hydration. Now more than 40 years later, the wake
of this court decision helped medical health care teams to be forthright in the withdrawal
or withholding of life-sustaining treatments under similar circumstances where there is
apparent meaninglessness of existence without consciousness. The Cruzan case then
reified the legal precedent that an incompetent, terminally ill individual could forego life-
sustaining treatment (with the decision of a surrogate). However, the Cruzan case led to
the decision that states also hold the right to set evidentiary requirements for surrogate
decision makers. In Missouri, the state can demand clear and convincing evidence that
the stated action is what the individual would have wanted if competent. The judgment
led to the use of advance directives to protect the self-determination of individuals who
have reached a point in their illness when they are no longer about to make their own
care decisions (Wachter & Lo, 1993). As in the Quinlan, Cruzan, and Schiavo cases, the
use of life-sustaining medical interventions becomes an issue when patients are no longer
competent to participate in decisions about their care. An advance directive is a means
of stating personal preferences for medical treatment while still mentally capable and in
anticipation of a time when one will no longer be as capable. Since treatment decisions
in these situations may be morally charged, costly, contested, and counter to the wishes
of the patient, the use of an advance directive as a means of extending the autonomy of
patients when they are incompetent has evoked considerable interest (Emanuel, Barry,
Stooeckle, et.al, 2012).
Even with established legal guidelines, the uncertainties demonstrated by these
exemplary cases makes the following question figural: What is the ethical frame in
which such cases should be judged? (Soldini, 2005). In each circumstance, there is an
ethical dilemma regarding the definition of death. Historically, before the development of
Ethical and Legal Issues in Assessment and Intervention 257
intensive care, an individual was declared dead when breathing and circulation stopped.
However, such traditional concepts of death are now problematic because an individual’s
breathing and circulation can be sustained on life support after all cerebral functions
are permanently lost, as occurred in the Quinlan, Cruzan, and Schiavo cases. All were in
persistent vegetative states. In Florida statutes, a persistent, vegetative state is defined as a
“permanent and irreversible condition of unconsciousness for which no recovery is possible”
(Koch, 2005, p. 376). Those seeking Schiavo’s continuance argued that her condition was
only end stage and terminal when hydration and nutrition were removed. Her life might
have continued for years had her care continued, as it had in the Quinlan case.
Out of this question, criteria for brain death were written, amplified, and are now
widely accepted: It is defined as “irreversible loss of functioning in the entire brain, both
cortex and brainstem” (Lo, 2000, p. 178). This designation is known as whole-brain
death, also defined as “permanent cessation of the functioning of the organism as a
whole” (Bernat, 1992, p. 21). Most states have adopted the Uniform Determination
of Death Act as an effective ethical definition of death. It declares, “Any individual
who has sustained either (1) irreversible cessation of circulatory and respiratory functions,
or (2) irreversible cessations of all functions of the entire brain, including the brain stem.
A determination of death must be made in accordance with accepted medical standards”
(Furrow, 1991, p. 1034).
Symbolically, the moment of death is no longer momentous. Deathbed scenes
throughout history have held cosmic drama in the expunging of weakness and sin,
purification of the soul, and redemption, all which occurred close to the moment of
dying. This concern for dying in grace carried over to rites for disposition of the
body and for religious customs that would protect the dead on their journey into the
afterlife. While this tradition persists, there is less theatricality due to the blurring of the
terms brain death, clinical death, and persistent vegetative state. Now, the graying of the
population and slow decline from multiple chronic conditions frequently result in cognitive
and communicational impairments before death. Nevertheless, people are encouraged
to bring their own beliefs and values to the end-of-life situation prior to the loss of
capacity.
Psychologist James Bugental says that in our humanity, we have two fundamental
givens. He says, “Humans have the capacity of acting or not acting, and humans have
choice” (1984, p. 543). It is out of our choices that meaning is created. Choice and control
are vital to personal sanity, even in the presence of death. In contemporary society, families
and patients must wrestle with medical advances and hard choices. The traditional
understanding of the Hippocratic oath acknowledges that in some circumstances
medical treatment is futile and has no reasonable possibility to “cure, ameliorate, improve,
or restore a quality of life that would be satisfactory to the patient” (Haley, 1996, p.
571). With the advent of medical technologies, however, it has become the slogan of
many physicians and medical practitioners, as well in society at large, to keep the patient
alive at all costs. This option is not necessarily the best decision or the only choice.
While the metaethical principles of beneficence, nonmaleficence, justice, and fidelity
all apply as they might in any studied dilemma, the principle of autonomy has more weight
during death assessment and intervention. Three terms must be defined. Autonomy is a
fundamental concept in the law that proclaims the right of individuals to act on their
own, to make decisions, and to determine their fate. Consent is a legal term indicating an
agreement regarding something to be done. It is known to be an act of reason following
deliberation. Consent offers an alternative to submission and is one of the derivatives
of autonomy. As noted earlier, an advance directive is a legal document consisting of
two elements: a living will and a durable power of attorney for health care. A living will
is an advance directive to the physician regarding the dying individual’s feelings about
the use of life-support equipment or other extraordinary measures to sustain life. It is
recognized as a legal document in all states. However, the use of living wills is still not
widespread and applies only to a narrowly defined range of circumstances. It is easily
rescinded even though it indicates the individual’s thoughts regarding heroic care. The
durable power of attorney is a document appointing a caregiver as health care proxy
who is legally designated to make decisions about treatment and medical care. There are
state-by-state restrictions on the enactment of the document, oftentimes requiring the
aid of a notary or lawyer to draft and execute (Rainer & McMurry, 2002). A third type of
directive is a do not resuscitate (DNR) order, also known as a no code. The DNR conveys a
physician’s order that a dying individual should not receive cardiopulmonary resuscitation
if the patient stops breathing and/or the patient’s heart stops beating. All three advance
directives are based on the concept of autonomy and ensure continuity of decisions made
while the individual is competent in the event of later loss of decisional ability.
Autonomy affirms the right to make decisions, consent describes the process of making
decisions, and advance directives ensure continuity of decisions across time. Advance
directives take the elements of decision making from the presumed moral authority of
the medical practitioner and place them into the consumer-driven perspective of health
care where the individual assumes the responsibility of choice. Dying is no longer a matter
simply between a patient and a physician. It is expanded to include intimates, family, and
community, all subsumed under the legal definition of surrogate. Over time, the value
laden concept of quality of life has replaced the more difficult to define phrase “death
with dignity.” However, the primary question revolves around constitutional guarantees
of a right to life. At the same time it does not allow clinicians to end a sustained life, even
by artificial means. The landmark Quinlan, Cruzan, and Schiavo cases are benchmarks of
the great dissonance between the law and clinical practice.
Because it declares the right of an individual to act in his or her personal best interest,
autonomy is basic to health care decisions. An individual need not submit to treatment
and can knowingly consent to or refuse treatment. It is a fundamental right that enables
each person to be treated as an individual rather than as a part of a collective. The
concept of autonomy and its practical translation allows the individual to make informed
treatment decisions that are consistent with personal culture, values, and belief systems.
Consent is an autonomous act that gives permission for a specific therapy, treatment,
or procedure to be performed. Included in consent must be information of the risk–
benefit ratio of the treatment. Ideally, consent is not a static event but an ongoing process
that involves clear communication between the individual and the health care provider.
“To perform a procedure or treatment on a patient in the absence of consent constitutes
abuse and subjects the one who performs the procedure to charges of abuse or assault.
Consent to perform procedures on patients who lack the ability to provide consent lies
with a guardian appointed by the local court. Parental consent is required in order to treat
children and juveniles” (Lamers, 2005, p. 111).
Informed consent is the voluntary decision made by a person with decisional capacity
who is cognizant of all relevant facts. The implication stands that the person who grants
consent is truly informed about the subject and is capable of making a decision based on
facts. The individual must understand the problem, treatment alternatives, and possible
outcomes, including side effects, costs, and timing. Veiled language, euphemisms, and
poor vocabulary are clinically discouraged, though are actively used in many aspects of
death-related care. Truly informed consent is explicit and includes a written, signed, and
dated legal document. Implicit consent is inadequate in end-of-life and death-related
care. Without a record that necessary facts were revealed and discussed, there is no sense
that the individual was able to make critical decisions regarding the course of treatment
or care.
Any discussion of the ethics of death care regarding assessment and intervention
must consider those who will speak for the deceased, particularly when there is
disagreement among those in the person’s intimate system. Despite the growth of the
hospice movement in the United States in the past 30 years, more than 50% of American
die in hospitals and long-term care facilities (Beckwith, 2005). This mortality statistic
implies a continuing cultural distance from death. As a result, the dying process of a loved
one can be a difficult family experience that can test even the closest family relationships.
Family caregivers provide more than 80% of all home care services, yet receive no formal
training or support for their roles (Beckwith, 2005).
Such caring brings focus to the metaethical principles of beneficence and
nonmaleficence. Beneficence refers to the notion of doing good, while nonmaleficence
directs the clinician to do no harm in the process. To many families and health care
teams, death still translates as failure. For family caregivers, this stance may lead to
increased isolation, misunderstanding, and feelings of abandonment when their loved
one dies. When family members are spread across the country and geographic dispersion
is added to the multiple derivations of families, e.g., stepfamilies and civil unions, the
intimate system often will delay and postpone decision making until an emergency forces
the issue. Differing belief systems, interests, lifestyles, experiences, and codes of ethics
come into play by the committee of family members obligated to make death-related
decisions, potentially causing conflict. Family members may disagree about the type of
care that should be provided. There may be disagreement of the disposition of the body
or of funeral rites. However, the most common issue is related to the settlement of the
deceased’s estate.
It is well-documented that most couples and families do not want to discuss death.
Despite the compelling reasons for advance directives and their professional and public
endorsement, they “…are infrequently used” (Emanuel, Barry, Stoeckle, et.al, 2012).
Regretfully, at the point when there is no avoiding the subject, the patient is unable
to participate in the conversation because of being too ill or sedated. Decision making
then falls to the surrogate or to unprepared family members. The potential for strained
communication is mitigated if clinicians provide timely clinical and prognostic information
and offer continuous psychosocial support to all involved in the death discussions.
Effective communication includes sharing the burden of decision making with other family
members. The shift from individual responsibility to a patient-focused consensus permits
the family to understand, even with great reluctance and sadness, how to proceed in the
most caring and beneficent way.
Again, the notion of advance directives comes into play. These documents should be
considered equally important to the dying person and to family members following the
death. It should be noted by the clinician, though, that a complication of the advance
directive process can add pressure to a family. Some individuals will indicate they want
their family’s wishes to take precedence over their own previously stated wishes, in the
belief that the family will do what is best (Sehgal, Galbraith, Chesney, Schoenfield, & Lo,
1992).
A final advance directive to be discussed is the last will and testament, a legal
document stating the individual’s wishes for the settlement of the estate after death. A
will is the best way to determine the distribution of personal belongings and assets, to
provide for family needs regarding underage children, to plan wisely for taxes, and to
make charitable contributions. Only by having a will can the individual be assured that
personal wishes will be carried out after death.
The fundamental meaning of the word care is “to grieve, to experience sorrow, to
cry out” (Rainer & McMurry, 2002). To care for another is an invitation to enter into that
person’s pain and suffering. There are few right answers in the ethics of assessment and
intervention at the time of death. The complexity of the time is marked by its fluidity and
developmental nature. During impending and actual death, there is a progressive loss of
social convention and a diminished expectation and capacity for efficiency. Clinicians are
obligated to provide instrumental aid and psychosocial support through the significant,
difficult, and intimate life transition.
Death is a unique experience for each person, bringing multiple possibilities of ethical
dilemmas. There is no substitute for the power of presence of the clinician. Professionals
working to assess and intervene in this stage of grief will find a high degree of systemic
confusion and must serve to balance fears with openness and anxieties with trust.
263
Chapter 27
On Bereavement Interventions:
Controversy and Consensus
Simon Shimshon Rubin, Ruth Malkinson, and Eliezer Witztum
How to help people deal with the loss of a loved one is a matter of concern shared by
individuals, families, communities, and societies. With scientific and clinical advances in
the field of thanatology, our ability to describe and specify variations and dimensions of
the bereavement response has grown dramatically (Malkinson, 2007; Malkinson, Rubin
& Witztum, 2000; Rando, 1993). Theory, research, and clinical experience have deepened
our appreciation of the lifelong impact of bereavement on the survivors.
This chapter on the value of intervention postbereavement has three parts. We open
with controversies and consensus involved in diagnosis and intervention. We then move
to a consideration of assumptions regarding assessment and intervention via the prism of
the Two-Track Model of Bereavement (Rubin, 1999). Finally, we utilize case material to
further clarify the extent to which intervention following loss is based on bereavement-
related concepts and cannot be adequately measured without attention to these themes.
Appreciating the pervasive impact of bereavement upon an individual or family,
however, is far removed from thinking that intervention is called for. In the words of a
deceased colleague: Although [grief and] mourning involves grave departures from the
normal attitude to life, [in most cases] it never occurs to us to regard it as a pathological
condition and to refer it to medical [psychological] treatment. We rely on its being
overcome after a certain lapse of time, and we [generally] look upon any interference
with it as useless or even harmful. If one removes the brackets, what is left is a direct
quotation from Freud’s 1917 work Mourning and Melancholia.
Almost a century later, it is possible to read in the scientific literature on the efficacy of
bereavement intervention as well as in the professional discussions advocating against the
inclusion of a bereavement diagnosis in the DSM5, strong echoes of Freud’s theoretical
assertions (Lancet, 2012). Many who disagree, however, challenge the idea that grief
is almost never pathological or maladaptive or that intervention is typically useless or
even harmful. Promoting a grief diagnosis may have the potential to identify problematic
responses to loss early and thus promote assistance that can mitigate suffering following
loss and bereavement. It is possible to agree or disagree with all of the above, but the
relevant question is, Do we have sufficient data to assist us to determine how to proceed?
This question is particularly important with regard to intervention.
The controversies surrounding the value of bereavement counseling and
psychotherapy stem from a number of sources. One source draws from differences in
adherence to what is valued in a rigorous approach to the measurement of bereavement
difficulties. This measurement rigor includes specification of criteria for when to call
something helpful and choices of outcome measures and populations (Kleinman, 2012).
Differences in the choice of paradigms in outcome research also contribute. Some
studies privilege the efficiency of treatment models with strict selection and control
criteria (Weston, Novotny, & Thompson-Brenner, 2004). Others follow the efficacy of
intervention models that seek to measure intervention outcome as it is practiced in the
real world (Seligman, 1995; Shedler, 2010). The use of meta-analytic statistics in reviews
of benefit following bereavement interventions include a variety of subsets of these
studies in their analyses, and they provide us with important information (Allumbaugh
& Hoyt, 1999; Jordan & Neimeyer, 2003; Kato & Mann, 1999). Nonetheless, the impact
and value of bereavement interventions remains open to discussion and debate (Larson
& Hoyt, 2007). While we are much more knowledgeable than we were 15 years ago,
a conceptual and operational paradigm shift may be required to provide some of the
individual information still required to intelligently address the issues involved (Currier,
Neimeyer, & Berman, 2008; Rubin, Malkinson, & Witztum, 2008).
The consensus among researchers, practitioners, and the bereaved themselves is that
there is no one right or universal way to experience and respond to loss (Neimeyer, Kesee,
& Fortner, 2000; Parkes & Prigerson, 2009; Rubin, Malkinson, & Witztum, 2012). Given
that perspective, should intervention be offered when the bereaved is suffering but may
or may not meet criteria for serious dysfunction? On the basis of current literature, it
appears that providing some form of counseling or psychotherapy for all the bereaved and
all bereavements has not been shown to be effective (Currier et al, 2008; Schut, 2010).
When bereavement interventions are targeted for particularly difficult bereavements, the
utility and effectiveness of psychological interventions emerge strongly (Gamino, 2011).
The Two-Track Model of Bereavement stresses the significance of joining a perspective
on biopsychosocial functioning with one attending to the nature of the reworked
relationship to the deceased following interpersonal loss (Rubin, 1981, 1999, 2012; Rubin
et al, 2012). This framework allows us to better consider whether what is being assessed,
discussed, and measured for both diagnosis and intervention outcome studies following
bereavement is sufficiently sensitive to the specificity of the bereavement process. It is
relevant for assessment, intervention, research, and theory (Rubin, Bar Nadav, Malkinson,
Koren, et al., 2009).
On Bereavement Interventions: Controversy and Consensus 265
The Two-Track Model of Bereavement and

Bereavement Intervention
Part 1: Theory and research. What is and what should be the evidence for bereavement
intervention? Simply put, it should be based on bereavement-related responses and
bereavement-related difficulties. Bereavement challenges people to find a way to continue
their lives following loss while dealing with the thoughts, feelings, and imagery that
accompany adjusting to the reality that a loved one has died. As a model that attends to
both biopsychosocial functioning (Track I) and the ongoing relationship to the deceased
(Track II), the Two-Track Model advances a bifocal perspective. The model joins attention
to function and dysfunction (present in all the studies reviewed by Currier and colleagues)
with attention to the relationship with the deceased following loss (not present in the
studies reviewed).
Renegotiating the psychological relationship to a significant person who has died
requires accommodating to a changed interpersonal reality vis a vis the deceased. Prior to
the loss, the relationship had involved connection as well as interpersonal interactions (or
the possibility of interactions) to this highly significant person. After loss, the relationship
will continue on only in the hearts and minds of the bereaved. This adjustment takes time.
The process of adjustment and mourning the loss of the beloved and the reality that had
been is often painful. It can be a wrenching experience marked by dramatic changes
in functioning, but the grief process is not isomorphic with changes in functioning
(Bonanno, 2009). An adaptive response to bereavement will generally balance attention
to the challenges of life with a flexible but ongoing connection to the deceased.
When difficulties in the response to loss occur, they typically reflect some degree of
interdependence as well as independence of the tracks of the bereavement response.
Early in bereavement, the interdependence is manifest. In cases of complications of grief,
however, difficulties may be manifest predominantly on only one of the tracks. Thus,
even in the absence of biopsychosocial difficulties, we cannot assume the bereavement
response is adaptive without information on the preloss and postloss experience of the
relationship with the deceased. If biopsychosocial functioning is adaptive and adequate
and yet memories of the deceased are avoided or superficially accessed, one can speak
of positive outcome only with regard to Track I. If the relationship and bond with the
deceased are accessible without significant difficulties, with indications of emotional
support, connection and growth, the relationship to the deceased and its meaning for
the bereaved are proceeding well. However, it there are indications of dysfunction in
biopsychosocial functioning, one may speak of difficulties on Track I domains requiring
assessment and possibly intervention. The memories of a relationship and the bond
to the deceased may be set aside and deactivated, but this type of response is quite
different from finding a way to retain a connection to the significant person who has died
alongside involvement with life and relationships with others. Attending to both spheres
of the bereavement response are shown in Figure 1.
Figure 1: The Twin Tracks of the Two-Track Model of Bereavement
Having presented what we understand bereavement-related interventions need

attend to, we now return to the comprehensive review of bereavement outcome of
Currier et al. (2008). In the 61 studies they reviewed, of the eight domains of outcome
measurement, seven were clearly related to track I’s biopsychosocial functioning. The
measures assessed general distress, depression, well-being, relational functioning/social
adjustment, physical health, anxiety, and trauma. The remaining domain of grief and how
it was measured was unspecified in the review (Currier et al, 2008). The design of the
studies as well as the results of the meta-analytic summaries reflect a bias drawing from
a medical model or pathology perspective. This emphasis by researchers and clinicians
focuses on the biopsychosocial elements of bereavement and can miss a significant part
of what bereavement, grief, and adaptation to loss involve.
The relationship to the deceased as central to bereavement outcome is not a new
development. Prior to the adoption of the continuing bonds paradigm (Klass, Silverman
& Nickman, 1996; Rubin, 1996), the earlier emphasis in bereavement was on grief and
mourning as a process of detaching oneself from emotional investment in the deceased
(Balk, 2011c; Freud, 1917/1957; Rubin, Malkinson, & Witztum, 2000). In other words,
the relationship to the deceased and its psychological representations have been a
focus of bereavement theorists and clinicians for close to a century. Discussing why this
central axis has not been sufficiently incorporated into the assessment of the bond to
the deceased and its place in assessing response to loss, recovery, and complications
of bereavement would take us too far afield. Suffice it to say that this state of affairs is
highly problematic and underscores why the Two-Track Model of Bereavement can be of
assistance here (Rubin, 1999; Rubin et al. 2009, 2012).
Of course, we are not the only ones to critique the state of bereavement outcome
studies. Somewhat surprisingly perhaps, after reviewing the evidence for bereavement
interventions, Currier, Neimeyer, and Berman themselves call into question the relevance
of the data from the 61 research studies they have analyzed (2008). They do this by
questioning the choice of outcome measures, which they describe as manifesting “an
overreliance on generic measures of psychopathology or general functioning that are
insensitive to the manifestations of bereavement adaption...most warranting attention
in therapy” (Currier et al, 2008, p. 656). In other words, the study of bereavement
interventions’ utility does not use measures most suited to the study of bereavement.
Narrowly focusing on the extent of behavioral difficulties and symptoms of various
types following bereavement is valuable to a point. Its predominance, however,
restricts the understanding by professionals and laypersons alike, of what is unique to
bereavement. Without such understanding, bereavement remains a source of major
psychological stress not fundamentally different from any other (Rubin, 1999; Rubin,
et al., 2008). The unchallenged predominance of biopsychosocial functioning as a
criteria for bereavement outcome is illustrated by a series of research studies aimed at
identifying what components of bereavement response influence how professionals and
nonprofessionals evaluate bereavement difficulties. In all of these studies, participants
were asked to evaluate brief case descriptions and answer questions about the stories.
Overall, research participants evaluated problematic responses to loss affecting the
biopsychosocial realm as being of serious concern, whereas difficulties in the ongoing
relationship to the deceased were typically not seen as significant or as warranting
intervention in and of themselves (Asmar-Kawar, 2001; Rubin & Schechter, 1997; Wiener-
Kaufman, 2001). This bias is reflected even more sharply in a recent research study
focused on meaning making (Halevi, 2012). Here, the contribution of meaning-making
difficulties was assessed by linking it to either difficulties in how one managed one’s life
(related to the Track I axis of bereavement outcome in the Two-Track model) or to how
one managed the relationship to the deceased (Track II). The results were consistent. In
cases where biopsychosocial functioning was compromised, meaning-making difficulties
added to the perceived severity of the problems—but only when bound up with how the
bereaved viewed his or her own postloss world (Track I). When difficulties in meaning
making were centered on the relationship to the deceased or the loss event, their effect
on evaluation of response to loss was insignificant (Halevi, 2012).
Succinctly put, while relationship to another is what initiates bereavement, grief
and the loss response, laypersons as well as most professionals respond similarly—as
if the relationship to the deceased is neither central or of particular significance. This
bias remains 15 years after the publication of Continuing Bonds and its adoption as
the predominant conceptual model in bereavement today (Klass, Silverman, & Nickman,
1996; Rubin, 1999; Rubin et al., 2012; Stroebe, Gergen, Gergen, & Stroebe, 1992).
Larson and Hoyt published a very thoughtful review and analysis of the “empirical
foundations of the new pessimism” (2007). Their article is more than a critical review of
both individual and meta-analytic research studies published at the time of their review
and their shortcomings. It is also a very strong critique of the way that trends in the
science of bereavement have undergone a transformation from modest or unconfirmed
evidence to becoming fact and accepted thinking. As a field, we need to be attentive to
the significance as well as to the limitations of our data. We turn now to a case study to
further illustrate what we mean by assessment, intervention, and research issues based
on the Two-Track Model of Bereavement.
Part 2: Clinical perspectives. In the following case material, we set forth an example of
assessment and intervention that conveys the significance of the continuing impact of loss
and bereavement.1 In working with clients, the use of strategic interventions as well as
judicious use of the letter-writing technique can assist the progression of psychotherapy.
The case under discussion was conceptualized as bereavement-related difficulty. It is,
however, important to remember that health care professionals and therapists working
from a focus on biopsychosocial functioning alone could conceptualize and intervene in
this case without attaching overarching significance to the relationship to the deceased
or specific bereavement-related issues.
Iris was a 60-year-old widow and mother of three, who broke her hand in a home
accident. Soon thereafter, she complained of anxiety, reported decreased appetite, sleep
difficulties, but no other mood difficulties. Due to her broken hand, she had difficulties
in day-to-day activities. She was referred for evaluation and possible psychotherapy.
Information about her past included the following: Iris was born in Israel to parents of
Turkish background. She was the youngest of eight children. Iris felt she had missed
opportunities in life (e.g., minimal education) and reported that she felt bitterness and
anger toward her parents whose parenting choices had held her back in life. Iris married
young to get away from home and initially stated that she had enjoyed a good life with
her husband, Moshe, who was a financially successful man. She had undertaken to get
a degree at the Open University and was successful. Almost 10 years earlier, however,
her husband Moshe became ill with cancer and died. Over time, there were additional
losses: a brother who died 1 year later and a sister who died 5 years after that. Upon
further discussion of her past, the impact of the loss, and areas of difficulty that emerged
after her husband’s death, a more complex picture emerged. As will be seen below, the
therapist (EW) believed that the primary source of difficulties here were bereavement-
related.
On assessment, Iris’s difficulties would probably not have met criteria for the variants
proposed for a DSM5 diagnosis of complicated or prolonged grief (e.g., Prigerson,
2008; Shear, Simon, Wall, Zisook, et al. 2011). Nonetheless, assessment with the Two-
Track Model highlighted that bereavement-related issues were present, and both tracks
were problematic. Iris’s feelings of anxiety, coupled with difficulties in sleeping and
functioning at home, represented elements of biopsychosocial functioning difficulty that
are characteristic of Track I. Later on, more of her sadness would emerge as important as
well. On Track II, the relationship to the deceased, Iris reported that when she thought
of her relationship to Moshe prior to his death as well as the circumstances of the death,
she had predominantly sad memories. It soon emerged that she felt ambivalent toward
him, with the sense that Moshe had left her with a “mess of a life.” She also felt strong
1 This case illustration is shortened and adapted from the extended case discussion and presentation on
strategic therapy and letter writing from Rubin, Malkinson, and Witztum’s volume Working with the
Bereaved: Multiple Lenses on Loss and Mourning published by Routledge (2012).
yearning and longing for him. Her loneliness was augmented by the additional losses of
her siblings.
Iris’s response to loss did have elements of complication (Rubin et al., 2008) and
prolongation (Prigerson et al., 2008). The triggering event had been Iris’s broken hand,
which had effectively shattered her reconstructed postloss life. The damage effectively
excluded her from her previous work and stimulated her feelings of fragility and
helplessness. It had reconnected her with how she felt after her husband had died. Then
she had felt that her life had come apart. She felt ignored by the extended family, financially
threatened on the verge of bankruptcy, and emotionally depressed and anxious. These
feelings had never gone away, but they were more pronounced again now.
The therapist’s formulation placed grief and difficulties in adapting to her multiple
losses as a central issue. The losses of her husband and the support he provided, followed
by additional loss of brother and sister, were painful and now reactivated. At the outset
of the treatment intervention, EW openly expressed his sympathy and communicated
empathic responsiveness. He also shared his formulation that placed bereavement-related
difficulties at the heart of her current plight despite the many years that had elapsed since
then. Additionally, he explained about letter writing and how he thought it would assist
Iris in reorganizing her thoughts and emotions related to the loss of her husband.
As part of the therapy, Iris was asked to write to Moshe in order to reopen and
continue her long-frozen dialogue with him. In this way, she could make him aware of
her struggles and her feelings. Iris agreed. In the first session following the assessment,
Iris began writing. Her initial letters interwove the personal with the family’s narrative. A
major influence on her response to her loss related to business complications involving
the nuclear, extended, and business family. After her husband’s death, it turned out
that much of his business had been based on oral agreements and that many business
associates who owed him money denied their debts. Many of them had even claimed
that he had owed them money. As she explained in her letter to him, her way of honoring
and maintaining Moshe’s reputation made her reluctant to declare bankruptcy.
By the fourth session, encouraged to do so by her therapist, Iris wrote for the first
time about the anger she felt toward Moshe because of the disorganized way he had
run his business. The absence of written and organized record keeping was devastating.
One consequence was that her children argued bitterly about whether or not to pay the
father’s supposed debts. Some of these were undoubtedly false, but which ones? Years
later, these issues continued to reverberate within the family.
The reopening of the inner dialogue within Iris and the dialogue with her husband
allowed for change and growth. For example, Iris discussed in therapy the difficult
interpersonal dynamics that developed between her and Moshe’s family after his death
due to the financial problems. The result was sad estrangement from this side of the
family and her own feelings of being rejected. She thought that his family was ungrateful
to Moshe and his help over the years, and she was angry with them. Direct work on the
relationship with her husband continued and found its way into dreams that directly and
indirectly featured him and reflected her longing for him. She shared her wish that he visit
her in her dreams. The focus on the relationship to her husband at this stage of treatment
was accompanied by intense emotions, but also with a sense of progress and readiness to
reduce the frequency of sessions.
In one of the later sessions, Iris shared the emotional upheaval she experienced as
the 10th anniversary of Moshe’s death approached. She hinted to the therapist that
she wished to cope with the upcoming event by herself. In the following session held a
month later, Iris described her experience of the memorial service. She wished to share a
special dream with EW. In her dream, she had been walking in her garden, which was full
of blooming yellow flowers. She added, “Daffodils are my favorite flowers.” The dream
was so vivid for her that when she awoke, she ran to the garden to check if the daffodils
had indeed bloomed. Together with the therapist, Iris concluded that blooming of the
daffodils represented her return to life. She said that for the first time after a long period,
she felt more optimistic.
This brief vignette reflects how bereavement-related difficulties may reverberate
and resurface years after the event. The circumstances of her husband’s death and her
dependence on him had resulted in anxiety, ambivalence, and strong, but suppressed,
negative emotions including anger, guilt, remorse, and disappointment. Over time, she
had returned to functioning although of a more limited range that had been the case
preloss. With the breaking of her hand and the changes in her lifestyle that followed,
she reentered and reexperienced the emotions that had characterized the initial years
following her husband’s death. The biopsychosocial elements (Track I) of difficulty
included anxiety, somatic complaints, and difficulties investing in life tasks, and ultimately,
a sense of dysphoria. As for the relationship with the deceased (Track II), she initially
suppressed her ambivalent and conflicted feelings toward her husband, who had left
her alone and with a financial mess that reverberated interpersonally and within the
famjly. She continued to feel yearning and longing for him. The symptoms of each track
were handled strategically—the first with cognitive restructuring and the second with
continuous letter-writing homework and use of metaphors to express her feelings. Iris
responded well to the interventions and soon overcame the resurgence of anxiety and
feelings of dependency that were manifest at the outset of therapy. She regained her
functioning and, in a relatively short time, succeeded in becoming more assertive. She
was able to create a space for herself as well as resume working.
In this case, the significance of the relationship to the deceased was both the major
source of difficulty and the major key to the intervention. During the years following her
husband’s death, Iris had managed to reach a relatively high level of functioning. It is
highly likely, however, that had one been assessing the nature of her ongoing relationship
to Moshe, her bereavement response would have been seen as problematic in that area.
The case of Iris is not one that would generally make its way into the research or outcome
literature on the effectiveness of bereavement intervention. It is, nonetheless, a case

that reflects the efficacy of bereavement interventions and the value of including the
bifocal perspective central to the Two-Track Model of Bereavement in our thinking about
bereavement intervention and outcome.
Conclusion
The loss of a significant relationship is a highly involved and multidimensional experience.
The opportunity to share one’s experiences and interact with others can assist in the
reworking of the life narrative (Silverman, 2000a). In many cases, but certainly not all,
these interactions serve to encourage and reconnect the bereaved to his or her own grief,
to a fuller appreciation of who the deceased was and could have been, and also to the
ongoing living fabric of one’s connections to one’s fellows. In Western society today,
self-help as well as structured interventions have a role to play in providing support.
Bereavement interventions serve to provide social support even as they span a very broad
range from nonspecific support to highly specialized interventions for specifically defined
difficulties (Currier et al. 2008; Kato & Mann, 1999).
The recent American Psychological Association’s resolution on the effectiveness
of psychotherapy is not a statement on the effectiveness of intervention following
bereavement. Nonetheless, it included three points relevant to our own discussion.
These are: (a) the value of evidence-based practice (“the integration of the best
available research with clinical expertise in the context of patient characteristics, culture
and preferences” [APA Task Force on Evidence Based Practice, 2006, p. 273], (b) the
importance of a working definition of psychotherapy (“Psychotherapy is the informed
and intentional application of clinical methods and interpersonal stances derived from
established psychological principles for the purpose of assisting people to modify their
behaviors, cognitions, emotions and/or other personal characteristics in directions that the
participants deem desirable” [Norcross, 1990, p. 218-220], and (c) the focus of treatment
(“...include problems in living, conditions with discrete symptoms that are identifies as or
as related to illness or disease, and problems of interpersonal adjustment.”) Painting with
a wide brush, the document states: “The general or average effects of psychotherapy are
widely accepted to be significant and large [APA, 2012].” We are not yet able to make
comparable statements about the value of bereavement interventions overall, nor of their
value with regard to the relationship to the deceased and the circumstances of the loss.
The literature to date, however, does identify consensus on the value of intervention
under conditions of traumatic and violent bereavements, for select populations, where
prolonged or complicated responses are present (Currier et al, 2009; Gamino, 2011).
Losses where social support is minimal fall under this category as well (Doka, 2002).
To these, we add subjectively perceived traumatic losses that also increase the risk of
maladaptive responses to loss (Rubin, et al., 2012). For the future, interventions need
to be examined for their impact on well being, their ability to shorten the period of
suffering, their reworking of the relationship to the deceased, their attention to the nature
of the ongoing relationship to the loss event and to the deceased, and for their success
to facilitate positive change and growth. Under those conditions, we expect that the
controversies on the effectiveness of intervention will narrow and additional areas of
consensus will emerge.
Ultimately, we unequivocally support providing assistance to the bereaved who are
interested in such help, by persons who are trained in bereavement and with proper
attention to issues of competence and ethical responsibilities. These forms of assistance
are generally assumed among licensed health care professionals but need not be limited
to them. Despite this support, we believe that the research and outcome literature have
not yet provided us with the necessary data to fully support or seriously challenge our
perspective.
273
Traumatic Death
Chapters 28 – 33
Chapters 28 through 33 focus on traumatic death. The Body of

Knowledge Committee defined this major category of thanatology
knowledge in this way: sudden, violent, inflicted, and/or intentional
death, shocking encounters with death.
The chapters in Part 5 focus on traumatic death in terms of these

indicators: culture and socialization, religion and spirituality, historical
and contemporary perspectives, life span issues, the family and larger
systems, and ethical and legal issues. All of the chapters are revised
from chapters that originally appeared in the first edition of the
handbook.
275
Chapter 28
Culture, Socialization, and

Traumatic Death
Jeffrey Kauffman
Trauma uniquely resists formalization. This constraint is true of individual, cultural, and
social trauma. Caruth (1996) argues that traumatic events are inherently incomprehensible
because at the core of trauma is forgetting. Blanchot (2000) and Krystal (2002) carry this
issue further, suggesting that the most traumatic aspect could not be experienced, but
is intensely dissociated, continuing to happen until it can, if possible, be remembered, or
otherwise, lived with, in one way or another until one dies. One is frozen in the moment
of traumatization. The disruption of memory in trauma is corollary to the disruption
of self. The core of traumatic death remains dissociated and incomprehensible, but its
consequences are life-defining. Trauma is a remarkable response of the human organism,
in which the cohesion of the self is shattered, producing a diversity of symptoms and other
life redefining consequences. Caruth argues that traumatization is being possessed by an
image or event. And, what the image or event means is “being possessed by the ravages
of the self violated by or exposed to a traumatizing death.” While trauma is outside the
realm of meaning, persons who have been traumatized may present differently than the
usual posttraumatic stress disorder (PTSD), with just about any of a wide spectrum of
mental health disorders, such as bipolar disorder, major depression, addictive disorder,
borderline personality disorder, somatic symptoms, phobias, dissociative disorder,
schizoaffective disorder, and anxiety disorder. Traumatization releases a monstrous
upheaval within. Trauma consequences vary widely or, as we say more technically, trauma
is plastopatholic.
Plastopatholic designates that traumas do not result in a uniform symptomatology,
but that the pathology is highly variable; the psychopathology of traumatic grief has
a high level of plasticity to it. Disturbances of traumatic grief savage the soul in such
a way that, while dissociation may be rampant and self-loathing, shaming, self-blame
may be typical, the forms these symptoms take are molded around the history of life
experiences in diverse ways. Traumatic grief disrupts the capacity to experience oneself. It
disrupts the continuity of time, based in the continuity of one’s experience of oneself. The
power of trauma to cause fragmentation and compromised self-healing efforts, leaves
the traumatized griever unable to maintain the normalcy of self-experience, developing
diverse disorder patterns. Plastopathic means the collapse of boundaries or destabilization
of boundaries between one pathology and another.
Human Relationships and Identity
Van der Kolk observes that traumatized persons avoid intimate relationships (1987,
p. 3). Relationships may be sought, but they tend to be turbulent, and emotional intimacy
is usually not possible. The grief from a traumatic death is especially socially alienating.
The sense of safety and self-belief are fragile, and, while the survivor of a traumatic
experience of death may aggressively pursue goals in the social world, he or she lives on
the thin ice of the vulnerability of the traumatized self to disintegrate, to be abandoned in
extremis, to flee in terror, reliving being helpless to stop the catastrophe. The traumatized,
in the extreme that characterizes the condition, “have no self, no ‘me,’ no individuality.”
(van der Kolk, 1987). Young and Erickson (1989) see trauma as disrupting the sense of
continuity, leaving one alienated and isolated. The trauma disturbs experience so severely
that the pre- and posttraumatic self are discontinuous. The disruption of the temporal
continuity of experience disrupts one’s connection to oneself and to others. “Victims
of extreme social violence often have difficulties relating to family members and to the
community at large” (Suárez-Orozco and Robben, 2000, p. 43). Traumatic death may
impair one’s capacity to experience social support, where safety normally would be found.
Special Social and Cultural Concerns
Bioarchaeological research shows that throughout the history of our species, interpersonal
violence, especially among men, has been prevalent. Cannibalism seems to have been
widespread, and mass killings, homicides, and assault injuries are also well-documented
in both the Old and New Worlds. No form of social organization, mode of production,
or environmental setting appears to have remained free from interpersonal violence for
long (Walker, 2001).
Trauma and Modernity/Postmodernity
Bracken (2002) emphasizes the sociocultural context of traumatic death, with a special
concern that those who work with victims of wars, mass violence, and natural disasters,
put aside their culture-bound assumptions and be open to the unique languages in which
other cultures experience traumatic death. He writes, “The current discourse on trauma
is simply inadequate to grasp the complexity of how different human beings living in
different cultures respond to terrifying events” (Bracken, 2002, p. 8). Bracken suggests
that the psychological concept of trauma is culture-bound specifically by the postmodern
occurrence of an “economic and cultural shift to an intense form of consumer capitalism,”
which defines our “contemporary experience of trauma, distress and alienation” (Bracken,
2002, p. 14). This understanding may be too narrow a causal attribution, as economic
influences are one of many key dimensions that define our culture.
Culture, Socialization, and Traumatic Death 277
Young takes a more radical approach, arguing that, “During the nineteenth century,
a new kind of painful memory emerged. It was unlike the memories of earlier times in that
it originated in a previously unidentified psychological state, called ‘traumatic,’ and was
linked to previously unknown kinds of forgetting called ‘repression’ and ‘dissociation.’”
(Young, 1995, p. 3). This argument takes trauma as a “new kind of painful memory” that
originates in our sociocultural world in the 19th century. His argument is basically that the
emergence of this new psychological language signifies a new way of experiencing; but
this approach seems to overstate the point, for a trauma by any other name is a trauma.
Nonetheless, a new age of traumatic death with mass killings and savagery seems to have
been repeatedly erupting since the French Revolution.
Young sees not just the concepts as new, but also the phenomena identified as
sociocultural constructs. Trauma theory is, then, itself sociocultural evidence of the
emergence of a new condition that Young traces to a new 19th century sensitivity to and
perception of the suffering of traumatic grief, a sanctioning that comes to recognize a
particular disruption of memory and identity on all levels of human organization. Trauma
is not just culturally diverse; it is, according to Young, an historically bound phenomena
of our culture.
Friedman and Marsella (1996, p. 11) report that accounts of “emotional reactions
to extreme stress have been noted by historians and literary authors for 4,000 years...”;
however pre 19th century reactions to devastating events may not have had the particular
meaning that trauma as hysteria has in the work of the 19th century psychologist Janet.
The difference between Janet’s (1978) work on hysteria and the trauma theory that has
emerged in the last quarter of the 20th century are late 19th and late 20th century
reflections of trauma in an age that is particularly dissociative and where the social and
cultural symbolics in which traumatic death was assigned a meaning are not functioning
very well. In this 19th and 20th century phenomena called trauma there is a psychological
sensitivity to and awareness of the disturbances in which a psychic injury is inflicted from
outside.
We can look at trauma theory as itself a sociocultural reaction of modernity, to an
urgency in a culture that, perhaps since the French Revolution (Fritzsche, 2004), has
been traumatized. This view of trauma as a sociocultural construct takes trauma to be a
specific name for an experience that was emerging in the West in the 19th century, that
is, that modernity and postmodernity are “an age of trauma.” Bracken, echoing Janoff-
Bulman (1992), argues that in the contemporary world, “the experience of horror calls
into question the basic order of the world” (Bracken, 2002, p. 3).
The world of posttraumatization, for Bracken, is the onset of a sociocultural world in
which, while traumatic death narratives are more abundant than ever, traumatic death
becomes socioculturally more pervasively alienated. Farrell (1998) makes the interesting
argument that trauma is a “strategic fiction that a complex stressful society is using to
account for a world that seems threateningly out of control” (as cited in Bracken, 2002,
p. 3). The very conceptualization of trauma in modern times is, by this light, a self-
expression of the traumatization of the social world, an assumption or construct intended
to control a world whirling out of control, by recognizing it, and by way of the imagination,
developing strategies intended to manage it. Suarez-Orozco and Robben write that “the
twentieth century brought us some of the most barbaric episodes of large-scale violence
and trauma” (2000, p. 1). The 20th century has been, globally, an age of traumatic
death. This fact is highly consequential, as traumatic death becomes more intense at the
beginning of the 21st century. In the 21st century death is traumatizing on a global scale,
and Americans are notably fearful.
Collective Trauma
In Everything in its Path, Kia Erickson introduces a concept of collective trauma, describing
how a traumatized community “gradually realizes that the community no longer exists
as an effective source of support and that an important part of the self has disappeared”
(Erickson, 1976). The loss of self may be a consequence of the loss of community.
Davoine and Gaudilliere argue that “historical and social traumas” (2004, p. xxiii) have a
pervasive effect on individuals and on the culture or society as a whole. They also assert
eccentrically, that historical-cultural trauma is the root of “madness.” But, it may not
be so eccentric. Traumatic disturbances embodied in a culture may instill psychological
disorder in the culture. They suggest that madness is a consequence of sociocultural
traumatic events.
Suarez-Orozco and Robben argue that collective trauma targets “the body, the
psyche, as well as the social order.” The sociocultural context “intertwine[s] psychic,
social, political, economic and cultural dimensions,” in an affliction of massive trauma.
(2000, p. 1). Cultural identity is shaped by traumatic death, as the trauma is encoded
into cultural narratives that are transgenerationally transmitted (Suarez-Orozco and
Robben, 2000). A group subjected to traumatic deaths receives “an indelible mark upon
their group consciousness, marking their memories forever and changing their future
identity in fundamental and irrevocable ways” (Alexander, 2004, p. 1). In traditional
societies traditional symbolics, practices, and rituals respond to collective trauma to
secure collective identity and the stability of meaning (Alexander, 2004). These are,
it is generally recognized, less available, less powerful and less consequential in the
posttraditional world and do not adequately serve the social reintegrative function of
premodern posttraumatic sociocultural practices. Major traumatic deaths shape a deeply
interior aspect of collective reality. Traumatic exposure violates the most private interior
of psychic and sociocultural being.
Alexander, following Herman (1992) and many others, argues that the restoration
of collective psychological health is in “lifting societal repression and restoring memory”
(Alexander, 2004, p. 7). Remembering is only a starting place toward restoration, though,
especially regarding collective death traumas; remembering is a defiance of sociocultural
and political powers that ignore, disavow, or derealize historical collective traumatic
deaths.
Trauma and Moral Responsibility

Alexander elaborates upon a social construct theory of trauma, by bringing in a very
significant moral dimension. “By constructing cultural trauma.... social groups, national
societies, and sometimes even entire civilizations not only cognitively identify the existence
and source of human suffering but ‘take on board’ some significant responsibility for it”
(Alexander, 2004, p. 1). This responsiveness to trauma is not an American strong suit.
Alexander’s account of the genesis of cultural moral consciousness of trauma begins in
the act of recognizing the occurrence or presence of trauma, and, once recognized, it
becomes the conscience of the culture, a moral call for a just healing. The concepts of
justice and healing sometimes are, with regard to trauma, closely related.
Cultural Diversity
PTSD is a culture-bound concept, though aspects of it are found in non-Western
cultures; these aspects are found through the eyes of Western cultural and psychological
assumptions. If societies construct reality, traumatic death will have a different meaning
and will be a different experience, in different socially constructed realities. Below I say
more about such difference, but at the outset note that this notion of cultural distinctions
implies that our own social construct of traumatic grief expresses something specific
about our own culture.
Friedman and Marsella summarize the basic question about the universality and
cultural diversity of trauma by writing that “while a universal neurobiological response
to traumatic events most likely does exist, there is room for considerable ethnocultural
variation in the expressive and phenomenological dimensions of the experience, especially
among comorbidity patterns and associated somatic, hysterical, and paranoid symptoms
and experiences... If more sensitive cross-cultural research and clinical methods are used
in the study of PTSD, ethnocultural variations may emerge with greater regularity and
clarity” (2004, p. 107). Notice that the explanatory categorization system used here is
Western psychology. Friedman and Marsella say the universal response most likely exists.
In this argument, a universal response is implied by the trauma reaction being basically
neurobiological and assuming that the neurobiological is not evolutionarily affected by
cultural factors. Also, we may infer from this account that variations between cultures
are on the level of experienced meaning. There is not enough research that attempts to
phenomenologically describe the experienced meaning of traumatic death crossculturally.
Most authors interpret non-Western behavioral languages of traumatic grief in Western
psychopathological terms, and not in terms of experienced meaning.
Kirkmayer claims that the major difference in non-Western cultures are in the somatic
and dissociative expressive languages of some cultures. He questions the accepted view
that trauma is an anxiety disorder. He argues that “the symptomatology of PTSD overlaps
with affective, somatoform, dissociative and anxiety disorders” (Kirkmayer, 2001, p.
131) and suggests that trauma is closely associated with depression and “some degree
of enduring loss” that is grief. He says that crossnational and crosscultural studies of
somatoform disorders indicate three problems for existing nosology. These problems are,
“(a) the separation of somatoform disorders from anxiety and mood disorders reflects
distinctions between physical and emotional distress that are not made in other cultures;
(b) in many cultures, somatic symptoms and attributions commonly are used as idioms
of distress to convey a wide range of personal and social concerns that may or may
not indicate individual psychopathology; (c) the nature of physical symptoms varies
cross-culturally with ethnophysiological theories, illness models, and previous illness
experience” (Kirkmayer, 2001, p. 132f).
Robben and Suarez-Orzco approach the problem of describing traditional cultures
on their own terms, asserting, “Traditional, non-industrial societies have often sought
to collectivize the social injuries of massive trauma. They have created healing rituals,
religious ceremonies communal dances, and revitalization movements, and have restored
symbolic places“ (2000, p. 22). They argue that due to repeated exposure to trauma the
Navajo developed a ritual. “The Navajo Enemy Way ceremony represents the culture’s
ritualized attempt to cleanse returning warriors from the deleterious impact of war trauma
and to help.... reintegration into peacetime Navajo society” (2000, p. 24). Friedman and
Marsella claim that what one culture experiences to be traumatic, another may appraise to
be a rite of passage, as in the case of the Navajo. Fairbank et al. (1995, p. 24) suggest that
in societies that provide stable and safe social bondedness, vulnerability to traumatization
is reduced. Such considerations as these need more study. Traumatic death in our culture
may be on the rise, and our culture’s rituals and norms may be hard-pressed to integrate
and symbolically transform traumatic death.
The Flourishing of Temporary Memorials
Memorials at the site of roadside fatalities have appeared in all corners of the world for
thousands of years. They first appeared in the United States through the influence of
Mexico in the 18th century and were called descansos, resting places—even though
they were not burial places (Doss, 2012). Today there is great increase in these roadside
memorials. Doss suggests that this increase expresses “an obsession with issues of
memory and history and an urgent desire to express and claim those issues in visibly
public contexts“ (p. 2). In our culture today this surge in temporary memorials may also
express a heightened anxiety about remembering and a traumatic sensitivity specific to
and indicative of our time; these memorials may be read as signs of the time. They are
occurring with increasing regularity not just in America, but throughout the world (Weir
2012.)
Contemporary sociocultural meanings of traumatic grief, the loss of a living bond
with the past, the privatization of death, and other ways in which traditional meanings
of death have been deracinated, prompt a particular need for public recognition of a
death, making hallowed the random, anonymous place where a roadside death occurred.
Placing a roadside memorial is an act of connecting and bringing one’s presence to and
sanctifying the place of a loved one’s violent death, an act of reaching out to the deceased
in an effort to make meaning of the utter meaninglessness of the vehicular homicide or

other senseless act that occurred.
Ann Cvetkovich calls these memorials “repositories of feelings and emotions
embodied in material form and narrative context” (2003). The objects used to construct
the memorial expresses an emotional story. The memorial is a construct that contains the
emotional reality of the overwhelming traumatic grief. The memorial is an expression
of remembering and feeling, where there is only a terrible inner vacuum. Typically the
material that makes up the memorial are flowers, real or plastic; a wreath; a handwritten
message; a photo of the deceased; a date; a name or initials; a cross; and perhaps a
personal item. The items express a connection to the loved one who died there and
represent being with the loved one in that lonely place by the wayside.
In No Place to Die: The Poetics of Roadside Sacred Places in Mexico (Weir, 2012),
Weir notes that the exact location of a person’s death is important in Mexican roadside
memorials, and this is certainly a factor in roadside memorials more generally, as the
death and the memorial transform the landscape into a text of traumatic grief. Weir, like
numerous other commentators, sees the meaning of roadside memorials in the force of
emotions. This recurring emphasis suggests that the phenomenon of roadside memorials
contains, in the simple objects present, the power of traumatic grief emotions. Wolf sees
these memorials to be “tears and prayers made visible” (Wolf, 2008).
In some states these memorials are banned and in others a permit is needed, such
as in Virginia. The state installs the memorial and leaves it up for two years. This taking
over converts the explicit function of the memorial into a driver safety program. On
Virginia’s markers the most prominent words are “Drive Safely.” This bureaucratization
of roadside memorials deprives the mourner of vital personal meaning in creating the
memorial and constructing it of objects that help negotiate the death and relationship
with the deceased.
Roadside memorials are one type of temporary memorial flourishing in contemporary
America, part of a wider memorialization boom that Doss calls memorial mania. There
are also increasing numbers of spontaneous traumatic grief memorials that mobilize
social groups, in what Brennan calls a “transmission of affect” (Brennan, 2004 p. 15),
a mass hysterical outpouring of traumatic grief. The most memorable of these was the
spontaneous memorials that covered Manhattan and Ground Zero in the wake the
Sept. 11, particularly in front of fire stations, where candles, messages, and objects were
assembled, expressing gratitude and an array of traumatic grief symptoms, marking the
entire physical and social landscape a traumatized zone. These spontaneous temporary
memorials express a desperate effort to make sense and find meaning in the loss of
the assumptive worlds of normalcy, predictability, and safety (Kauffman, 2002b). When
proximity to the site of the World Trade Center was accessible, it was sanctified and
claimed by the traumatic grief of the entire community, becoming a temporary memorial
by the objects placed there, vigils performed there, and the community bonding there, a
site of traumatic grief mobilized by these memorial acts into a sanctified place of healing.
Spontaneous community expressions of traumatic grief through temporary memorials

have occurred frequently in contemporary America. Within hours at Columbine High
School where two students gunned down 15 students and teachers, the campus
became an overflowing grief-drenched site, with mounds of memorial objects growing
to 4 feet deep, with personal notes, balloons, stuffed animals, religious items, origami
cranes, sneakers, soccer balls, shirts with messages, votive candles, and more; venders,
crowds, and television crews contributed to making it a frenzied traumatic grief space,
a memorial circus flooded with traumatic anxiety. These are but two of a great number
of spontaneous community-cohesive memorial events at sites of murders and accidents,
such as the site where a mother drowned her two children in a car in a lake, where TWA
flight 800 crashed, where Matthew Sheppard was murdered by homophobics, and at the
Johnson Space Center after the Columbia disaster. This brief list shows a variety of events
that draw people together in creating a spontaneous temporary memorial of material
objects and sites of vigils. These are spontaneous memorials of grieving communities in
the wake of traumatic deaths that have public meaning.
Temporary memorials are not always site-specific to the death, such is in the case
of memorial decals in the rear window of cars, where the driver is bearing witness to
the loss, displaying the memorial publicly as an insignia of grief and memory. In all
types of temporary memorials a mourning-negotiation seeking to give meaning to the
overwhelming emotional wound of traumatic death is involved.
Internet and Traumatic Grief
The Internet has become a valuable resource and networking place in the field of traumatic
grief, as it has in so many aspects of life. Persons experiencing traumatic grief may find
therapy, support, information, and a place for memorials. Communities may find a place
to meet and talk after a traumatic loss. Professionals may find training programs, research
and clinical information, including information about the Internet and traumatic grief.
Sofka coined the term thanatechnology to name the thanatology resources available on
the Internet. In addition to social support sites, she recognizes sites for the grieving as
“narrative, commemorative, expressive, and experiential” (Sofka,1997 ).
Online support groups provide similar benefits to traditional support groups, reducing
isolation, information sharing, and education. Gary and Remolino (2010) note that there
are, however, no set standards for interaction, crisis management, or training of group
leaders, if there are group leaders. Online support groups also emerge in reaction to
specific traumatic events. After school shootings [referring to unspecified events they
studied between 1997 and 1999], for example, students and others affected have gone
online to try to understand these school tragedies, to reach out to others, to learn how
to make schools safe, to cope with school violence, to handle grief reactions, and to
recognize danger signs of violence in high-risk youth. Once the shock wore off and the
grieving began, online support groups for loss were overwhelmed in the days and weeks
following many of the school shootings. New members, either from the local area of
the shootings or from among television viewers, joined veteran online support group
members to seek support and to express anger, outrage, and other emotions. Dialogues
were strained, and many members seemed to experience inhibition when disclosing
intimate feelings (Gary and Remolino, 2000).
Other limitations of online groups they cite are anonymity breaches, differing stages
of group development and phases of grief among members, hoax perpetuations, limited
feedback, and lack of accountability.
By the beginning of the 21st century online support groups are a regular occurrence
after a public event of traumatic grief. For example in the aftermath of 2007 Virginia
Tech and 2008 Northern Illinois University shootings “nearly 90% of students joined a
shooting related Facebook group, 80% used instant messaging to discuss shootings and
more than 60% discussed trauma on their Facebook walls” (Vicary & Fraley, 2010). While
this online communication contributed to a sense of connection, Vicary and Fraley did not
find any long-term benefit from these activities. Online support groups are a developing
medium of support for traumatic grief and come with benefits and risks. These risks need
to be better understood to help minimize risk.
Aboujaoude has noted “that because almost every significant event is recorded and
turned into web images and videos, we are repeatedly exposed to traumatic, sad and
fear-inducing events whether we wish to be or not” (quoted in Humphreys, 2011). If a
traumatized person does not feel sufficient control over the experience, this exposure can
be retraumatizing. The traumatized vulnerable need to exercise care to be safe in an age
of ubiquitous electronic images of trauma.
Cognitive behavior therapy (CBT) has developed online treatment modalities,
and CBT, the most researched approach to psychotherapy, usually has an evaluation
component built in. An example of this online treatment and research is the work of
Wagner, Knaevelsrud, and Maercker who developed and evaluated the efficacy of a
short-term Internet-based CBT program for bereaved people suffering complicated grief.
They concluded that, “Participants in the treatment group (N = 26) improved significantly
relative to participants in the waiting condition on symptoms of intrusion, avoidance,
maladaptive behavior, and general psychopathology, and showed a large treatment
effect. Follow-up results show that this improvement was maintained after 3 months”
(Wagner, Knaevelsrud, & Maercker, 2006, p. 429). Numerous other Internet-based
treatments also report decreased trauma symtomotology. Here is an example of another
such study. Interapy: The Effects of a Short Protocolled Treatment of Posttraumatic
Stress and Pathological Grief Through the Internet examines the effectiveness of an
online standardized treatment of posttraumatic stress and pathological grief, and the
authors report that “participants improved strongly from pre- to posttreatment on
posttraumatic stress and pathological grief symptoms and in psychological functioning.
These improvements were sustained during the follow-up period. Moreover, 19 of the 20
participants were clinically recovered after treatment” (Lange, Schrieken, et al., 2000, p.
175). The efficacy of online psychotherapy programs such as this for traumatic grief and
the optimism and meaning of these outcomes, however, needs greater scrutiny.
Surfing the Net for Medical Information about Psychological Trauma: An Empirical
Study of the Quality and Accuracy of Trauma-Related Websites (Bremner, Quinn, Quinn,
and Veledar, 2006) cautions against the quality of information about trauma available on
the Internet. Of the 72 sites evaluated based on searching psychological trauma, stress,
PTSD, and trauma, 82% did not provide a source of their information, and 41% did not
use a mental-health professional in the development of the content. Ratings of content
(e.g., accuracy, reliability, etc.) were 4 (2 SD) on a scale of 1 – 10, with 10 being the
best. There were similar ratings for the other variables assessed. These findings suggest
that although abundant, websites providing information about psychological trauma
are often not useful and can sometimes provide inaccurate and potentially harmful
information to consumers of medical information...This study shows that websites related
to psychological trauma are not providing appropriate information.
Mobile Internet technology is also employed in crisis situations to provide treatment
and guidance to victims at a remote disaster site where onsite help is not available or to
network among colleagues (Fan, Yang, et al., 2009).
Training programs for professionals in traumatic grief may also be found on the net.
Here are some examples: http://www.nctsn.org/category/affiliated-resources/website-
and-online-resources at the National Child Traumatic Stress Network. The University
of Maryland School of Social Work offers an interactive training in CBT for child trau-
matic grief at http://ebpexchange.wordpress.com/2008/09/11/childhood-traumatic-
grief-ctgweb-online-interactive-training/, and a website called Trauma Recovery offers
CBT training programs at http://trauma-recovery.net/2011/11/01/3-online-training-
programs-about-traumatic-stress-and-interventions-high-quality-free-and-convenient/
Since the 1990s (Sofka, 1997) memorial sites have been appearing online, and there are
now many. For traumatic grief, where personal narratives are especially prone to be si-
lenced in shame, new digital modes of expression provide new memorializing opportuni-
ties. Content typically includes photos, music and videos, stories from family and friends,
and a guest book, which may be especially meaningful in dealing with complications of
traumatic grief.
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Chapter 29
Religion, Spirituality, and Traumatic Death

Gerry R. Cox
Religion and Traumatic Death

Sociologists generally view religion as the way in which peoples put their beliefs into
practice. Religion is something that people do. Death is not a private event, nor is it only
a psychological event. The rituals of religion help us to recognize, understand and process
our beliefs about dying and death. The challenge of traumatic death often causes those
providing social support to be even more involved in religious rituals. Those who provide
social support do so by attending the wake or visitation, funeral, cemetery rituals, the
meal afterwards, donating to favorite charity, bringing food for the grieving, visiting or
simply sending a personal sympathy note. For many religious organizations, death rituals
are quite predictable. As an example, Roman Catholic practices are very similar from one
church to another, from one region or nation to another, from one year to another year.
Using religion to manage traumatic death can produce both positive and negative
outcomes. Positive religious outcomes would include feeling connected with God, finding
comfort and assurance in God’s love and care, seeking God’s aid in overcoming anger
and/or seeking forgiveness, perceiving God as a source of strength in time of need, and
attempting to find control through God’s grace and help. This positive religious outcome
allows one to better accept and adjust to the traumatic loss. Negative religious outcomes
would include questioning God’s love and mercy, feeling abandoned by God, feeling
punished by God, questioning what I did wrong to make God punish me, and feeling
confused or dissatisfied with God. Those who experience positive religious outcomes will
exhibit fewer negative symptoms and psychological stress. Negative religious outcomes
could lead to depression, lowered quality of life, and other negative psychological
symptoms. For the religious person, death can bring out the frailty of faith, and it can
detach us from any promise or hope that can lead to despair and hopelessness leaving
a dark cloud on our remaining days (Aden, 2005). Koenig (1997) found that negative
religious coping led to greater depression and lower quality of life. Death is both natural
and mysterious and activates a complex mixture of emotions, thoughts, behaviors, and
changes like no other experience in life (Richards, 2001). Rituals/ceremonies evoke a
cognitive means of making sense of our traumatic losses.
For the Australian Aboriginals, ceremonies are sacred and secret at the same time.
Elders hold knowledge that is crucial for survival, and this knowledge is kept secret
because it only has meaning when it is spoken by the ceremonial elder to an initiate
in a way that affects every aspect of his being (Randall, 2003). As in Native American
religion, the Aboriginal religion does not separate the spiritual from the practical. After a
traumatic event, a Lakota might go to the hills for spiritual renewal. For the Hopi, their
sacred place would be the land of the red rocks, a place with a deep, reverent connection
to their ancestor spirits as well as those of animals and plants (Aitchison, 1992). For the
Australian Aboriginals, there are also many sacred sites. The Katatjuta, or Olgas’, located
in the Northern Territory; Uluru, or Ayers Rock, located in the center of Australia; and
even Mother Earth in her entirety is sacred. Like American Indians, the Aboriginals think
that the destruction of sacred sites causes illness and even death among elders (Voigt &
Drury, 1997). American Indians and Aboriginal peoples both manage traumatic death
through rituals and ceremonies. The destruction of culture, the loss of tradition, and the
influence of modern society has made it much more difficult for these groups of people
to manage traumatic deaths. For the Navajo or Diné, grief is private with public grief
viewed as harmful while therapists often view lack of public expression as negative; for
the Navajo, it is not, and grief assessment should include the entire family or clan rather
than focus upon the individual (Rubin, Malkinson, & Witzum, 2012).
For all religions, ritual and ceremony are basic. Hindus use elaborate cremation
ceremonies that involve the entire community, African villagers engage in a series of
mourning rituals that often last for weeks, Jewish traditions require burial within 24 hours
but require a 7-day mourning vigil or shiva, Irish-Catholics hold wakes that include humor
and sadness from stories about the deceased in a long practiced ritual (Biziou, 1999).
While the rituals and ceremonies vary immensely, all religions use them to help manage
traumatic death. The Chinese both detach and maintain connections with the deceased.
Traditional Chinese farewell rituals are designed to assist the deceased in terminating their
relationship with this world and their passage to the next with spiritual guides offering
prayers during the wake, the funeral, burial service, and every 7th day from the date of
death times 7 (Cheung, Chan, Fu, Li, & Cheung, 2006). Cheung and colleagues report
that the Chinese, unlike those of a Judeo-Christian background, typically link death to
ghostly actions, to painful death, and to judgment in hell as punishment for any wrongful
act that the person may have committed during his or her lifetime (Cheung et al., 2006).
Buddhists suggest that death is inescapable, that life is short, that the young and healthy
may die before the old and infirm, that as sheep are taken to slaughter one moves closer
to death with each step, and that rebirth leads to suffering and death (Klein, 1998). Dying
and death are viewed as a religious opportunity in the process of dying and rebirth, while
traumatic death, depression, suicide, desperation, or fear can put the person at risk in
Religion, Spirituality, and Traumatic Death 287
the process (Klein, 1998). For all groups, rituals aid those who are grieving. Christians,
Buddhists, American Indians, and many other groups after experiencing a traumatic loss
engage in rituals such as creating a sacred place, journaling or story-telling, drawing or
writing, humor, music, art, creative experiences, and ritualistic prayer to aid their coping
with loss. For example, a Buddhist family might create a sacred place in a room or less-
often used portion of the home containing pictures; trophies, and other artifacts from the
person’s life; candles and other sacred items; and items from the deceased person’s life.
Christians might include icons, crucifixes, rosary beads, and other religious items as well
as the other items used by Buddhists. Such ritualistic acts allow us to keep the deceased
close and to allow us to remain spiritually with them.
Spirituality and Traumatic Death
In recent years, there has been a trend to speak of spirituality rather than religion. What
might have been described a generation or so ago as a religious person is now described
as a spiritual person. As science and secularism have grown in society, the use of the term
spiritual has replaced the term religious. People who do not even attend church can now
be considered to be spiritual.
Catholic theologian Matthew Fox describes spirituality as the search for one’s roots
(Fox, 1981). Rabbi and scholar Earl Grollman suggests that being embraced by a loving
community is fundamental to Jewish spirituality (Grollman, 2000). Morgan suggests that
spirituality is the human quest for meaning (1993).
The role of spirituality in grief is to offer the grieving ways to express their grief,
to share their grief, and to bring them back from the chaos of traumatic death. Klass
argues that losing, finding, or relocating spiritual anchors in the aftermath of personal
devastation—a process that requires reconstructing one’s life when the foundations of
what was thought trustworthy was broken—is the basis of spiritual life (1999a). Rituals
allow the expression of our spirituality and aid our grief. Golden suggests that rituals
provide a way to release the chaos (1996). Golden suggests that ritual activity is intended
to connect with our pain and grief and allows us to move out of ordinary awareness and
into the experience of grief in a safe way for a period of time (1996).
Elisabeth Kübler-Ross argues that each human has four quadrants: physical,
intellectual, emotional, and spiritual. A quadrant is literally “each of four parts of a circle,
plane, body, etc. divided by two lines or planes at right angles.” (See http://askoxford.
com.) The spiritual quadrant, which is based upon love we receive from others, sustains
us through time and helps us through the windstorms of life that are all of the tragedies
of our lives (Kübler-Ross, 1991). Not only does spirituality allow us to express our grief,
but it also allows us to grow through meditation, reflection, prayer, and ritual expression.
Spiro suggests that if there are no rituals or ceremonies to appease the dead, then
the living can turn fear into anxiety, and the bereaved can come to feel or be the victim
of overwhelming hostility (1967). He also says that Jewish culture reflects the same
ambivalence as other cultures between the desire to hold onto the dead and the desire to
get rid of them as soon as possible, and that while immediate burial gets rid of the body
as soon as possible, mourning rites and ceremonies guarantee the perpetuation of the
dead (1967). By contrast, Buddha preached a religion devoid of ritual and suggested that
the intense self-effort required to manage the end of suffering was in our hands (Smith,
1994).
Death is considered a natural occurrence within life, something to be accepted rather
than feared. Parkes sees grief as the cost of love (2011). He also suggests that the root
cause of grief is separation anxiety, which reflects a continuing and powerful desire to
search for and cling to the lost person (2011). American Indians reduce separation anxiety
by maintaining a continuing relationship with the dead. Rather than disconnecting with
the dead, America Indians continue to have a relationship with them. From the American
Indian perspective, death is not a defeat. It is not the result of an offense against God or
some other deity but, rather, the common fate of all.
Almost universally, tribes make provisions for a spirit journey, whether for a single
burial or for a group burial (Atkinson, 1935). Tribal groups did not abandon their dead
but provided them with ceremonies and dignified disposal.
Many spiritual practices exist for all cultures. Disposing of the dead is a universal
spiritual practice. Nowhere are losses of tradition in cultural practices more evident than
in the realm of funeral practices. The European immigrants to the United States, Australia,
and elsewhere have lost their own traditions and have attempted to destroy the traditions
and practices of those whom they conquered. (From the indigenous perspective, the
people who invaded the Americas, Australia, New Zealand, etc., are immigrants who
conquered native peoples and destroyed or at least tried to destroy their cultures and
religions.)
Golden (1996) suggests that the rituals of Potlatch Ceremony of the Athabaskan
tribes of the Northwest North America allow the entire community and not just the
grieving family to move from grief into a more joyous ceremony. Thompson argues that
while grief is very personal and intimate and, therefore, somewhat isolated, that research
supports that collective grieving is mutually supportive and, while it can be divisive, it
generally aids individual grieving (2009). The dominant U.S. culture, lacking grief rituals
like the Potlatch, makes grief to be private and, paradoxically, places obstacles to connect
to the grief within (Golden, 1996). Adams (2002) suggests that after traumatic death,
the spiritual challenges are not given sufficient attention, but rather the clergy are given
the job of attending to religious rituals at the time of the funeral, burial, or cremation and
that spirituality is often a low priority in family life (2002). Jupp argues that as faithful
and observant Catholics approach the end of their lives, a common cause of concern is
what will happen if their children and those close to them are not religious (2008). The
community of believers in their congregation will hopefully provide them with the rituals
that they desire.
All cultural groups develop patterns to manage death as a community. People wash
and prepare the body. Family and friends mourn the loss. Some wear mourning clothes.
Religion, Spirituality, and Traumatic Death 289
All cultures engage in mourning practices. Some cremate, and some bury the deceased.
The deceased is assisted on his or her journey by song, laments, eulogies, gossip, laughter,
joking, conversing with the dead, appeal to spirits, appeals to God, dancing, prayer,
and ritual. Some cultural groups drop tradition because they become too sophisticated,
cultured, religious, or educated to follow the “old ways.” Spirituality and rituals that
are not used are soon forgotten. Generally, most immigrants to the United States have
deliberately rejected and long-since forgotten their traditional ways.
America Indian Spirituality
The values of American Indians are reflected in their spirituality. Although all Indians
do not think alike (McMaster & Trafzer, 2004), the sacred is an important part of this
world. The sacred is reflected through symbols in music, dance, silence, meditation,
rituals, and ceremony. Encounters with the sacred evoke deep emotions and behavioral
transformations. Music, dance, drama, art, and sculpture inspire spiritual engagement
while providing explanations for why things such as birth, existence, and death occur.
Each of the hundreds of indigenous nations has a diverse, rich, heritage of forms of
spirituality, expressions, and traditional narratives (Tinker, 2004).
Evil also is embellished with meaning. The ultimate evil is often portrayed as death.
The world is a violent, dangerous place, and yet, spiritual worlds evoke images of peace
and harmony. The sacred gives meaning and purpose to human existence.
Spiritual empowerment originates from ritual, sharing with family and community,
and living according to the model of spirituality of the group. All cultures have rites of
passage for marriage, adulthood, aging, and death. Stories are told of children dying,
engaging mythic monsters in combat, and challenging spirits in battle. In funeral rites,
the newly dead are often thought to be in an in-between state. The dead are respected
as ancestors; such ancestors also are feared as a potential source of death for those who
live. Rituals that manage dead spirits are developed to cope with grief and loss. Artistic
expression is also used to aid with loss.
Spirituality and America Indian Values
A single American Indian religion cannot be identified. Nonetheless all religions and
spiritual orientations have similarities. American Indians believe they dwell in a world
filled with spirits; birds carry messages, animals tell tales, rocks speak, and spirits roam
the earth. Communication with mysterious beings is available to all. Dreams and visions
provide messages or instructions that all may receive as a gift from the spirits. The dead
remain a part of our lives. According to Jupp, continuing bonds allow for a widow to
remarry while still retaining a relationship with her dead husband (2008). As Attig (2001)
suggested that we can continue to love in the absence of our loved ones, Dennis Klass
views the continuing relationship with the deceased as a way not only to recognize their
death and to mourn them, but also to continue the bond with the deceased and give
meaning and validation to our relationship with them (Klass, 2001). All life has a purpose/
meaning; each person exists for a reason, and lives trying to identify what that reason
may be. Visions, dreams, rivers, rocks, animals, birds, and spirits can give messages to be
listened to. Cultures with oral traditions can travel back as far as the chain of memory will
allow. In a world filled with spirits, the past provides a guide to the present. Storytellers’
tales of animals that talk, of spirits that roam the earth, of rocks that have messages both
instruct and entertain those who listen. Storytellers play a drum, sing, and dance as they
weave their tales, while masks, costumes, regalia, and performances mark their stories.
Such rituals serve a spiritual role of aiding us in our spiritual journey of grief (Richards,
2001).
All of us face losses. One’s spirituality can be an important component in that learning
process. Attig suggests that intellectual/spiritual coping helps us through concepts and
beliefs to orient us to reality (1995). Death is natural and mysterious. Traumatic death is
not natural, but it does create mystery. Why did it occur? How did the person die? While
losses are constant in life, traumatic death is not.
The person who is grieving a loss may ask others questions that are painful and
confronting when they are in pain. We need to listen to the pain of our loved ones
without judging or lecturing on the rightness or wrongness of their reactions (McKissock,
1998). Papadatou calls for a renewed focus on relationships as dying and death are social
affairs that are shared by family, friends, and professionals (2009). After suffering a loss
to a violent act, we may suffer dramatically over the loss of a favorite toy, a pet, or the
loss our house to a fire or other disaster and show little emotion over the death of a loved
one. Our public reaction to the loss does not necessarily reflect the magnitude of the loss.
Our grief for the toy or pet or even our grief for a person who was distant from us may
be an outlet for other losses that occurred long ago (Gilbert, 1999). When grieving the
loss of a loved one to a violent death, the loss of a pet may be more than we can handle.
Little losses become big losses. Fleming and Buckle suggest that picking up the pieces is
exhausting, painful, and continues indefinitely, but that we must engage in regeneration
(Buckle & Fleming, 2011). We may or may not understand this process, but we need to
try to understand the process of loss and growth to be able to cope with violent death.
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Chapter 30

on Traumatic Death
Lillian Range
Traumatic deaths may contain elements of (a) suddenness and lack of anticipation; (b)
violence, mutilation, and destruction; (c) preventability and/or randomness; (d) multiple
deaths; and (e) the mourner’s personal encounter with death (Rando, 1993). Traumatic
deaths could be due to war, suicide, homicide, accidents, sudden infant death syndrome,
terrorism, pervasive epidemics, genocide, and natural disasters. Traumatic loss differs
from nontraumatic loss in the psychological impact (Kauffman, 2002a). How people
historically understood and how they understand responses to traumatic death diverge in
some cases and converge in others.
As early as 1920, psychodynamic theory addressed the issue of traumatic death. In
Beyond the Pleasure Principle, Sigmund Freud (1920, 1975) developed the psychodynamic
idea that humans have two instincts, both derived from broad, all-pervading biological
principles. One instinct, eros or libido, involves sexuality or love; another, thanatos or
aggression, involves death or self-destruction. Aggression turned outward causes war,
murder, etc.; and, aggression turned inward causes melancholy, depression, suicide, and
destructive habits such as smoking. According to psychodynamic theory, traumatic deaths
that have a human component (such as murder) are a manifestation of the aggressive
instinct.
After a traumatic death, people may respond by developing annihilation anxiety (an
exaggerated fear of their own death) or a repetition compulsion (intrusive thoughts,
images, nightmares, etc., of the death). Psychodynamic theory posits that annihilation
anxiety comes from an unconscious fear that I caused the death by wishing for it;
therefore, I feel guilty. Repetition compulsion is an attempt to achieve analgesia or
excitement, which reduces my emotional pain. These responses may occur because I feel
a heightened sense of personal vulnerability to suicidal or homicidal impulses.
Psychodynamic theory emphasized the critical importance of childhood conflicts. Thus,
traumatic death may correspond in its essential features to some early childhood trauma
or conflict-laden fantasy. The individual would then misperceive current reality in terms of
the childhood conflict and respond as he or she did in childhood. Alternatively, traumatic
death may lead an individual to turn away from current reality and unconsciously seek
gratification in the world of fantasy. The individual would then develop psychological
symptoms based on the childhood conflicts (Arlow, 2004). Psychodynamic theory would
posit that traumatic death overwhelms the person’s ability to handle instincts, particularly
the aggressive instinct. Historically, psychodynamic theory was precursor to other theories
that also addressed the issue of traumatic death.
An outgrowth of psychodynamic theory, attachment theory began with a monograph
summary of a report for the World Health Organization in 1951. Bowlby (1969, 1982)
emphasized the importance of attachment to the mother, particularly during the second
half of the first year of life, when the relationship is developing. Three social conditions
introduce complications into the grieving process: the loss is socially unspeakable, the
loss is socially negated, and the loss occurs in the absence of a social support network
(Worden, 1991). Traumatic deaths are often unspeakable (e.g., suicide), socially negated
(e.g., homicide), or situated in the absence of a social network (e.g., aftermath of
Hurricane Katrina). Therefore, traumatic deaths can threaten the attachment bond even
more than other losses, thereby damaging the person’s ability to make subsequent secure
attachments. Psychodynamic and attachment theories emphasized early life events, and
laid the groundwork for other ways to understand traumatic deaths.
In the late 1950s, behavior theory emerged as a reaction to the psychodynamic
theory prevalent at the time. Associated with Russian scientist Ivan Pavlov, and American
scientists B. F. Skinner, Joseph Wolpe, and Albert Bandura, behavior theory understood
psychological problems based on classical and operant conditioning, emphasizing the
role of associations and contingencies in shaping human responses and adaptation.
Behavior theory stressed the importance of commitment to the scientific approach,
including testable hypotheses, measurable outcomes, replication, and innovative research
strategies that allow rigorous evaluation of specific methods (Wilson, 2005). Behaviorism
initially focused solely on observable behavior, rejecting all cognitive mediating processes.
Newer revisions of behavior therapy, associated with scientists such as Aaron Beck and
Albert Ellis, however, recognized the importance of cognitive mediating processes (Beck,
1976; Ellis, 1962). Bandura (1969, 1974) unequivocally identified the fundamentally
important place cognition plays in learning and maintaining behavior. Thus, cognitive/
behavioral theory posits that environmental events influence behavior depending on how
the individual perceives and interprets them. For cognitive/behavioral theorists, whether
or not a death is traumatic depends on how the individual interprets it.
For example, a person might react with learned helplessness to the sudden, unex-
pected death of a loved one, and subsequently develop depression. In this case, cogni-
tive/behaviorists would stress current determinants of the depression rather than possible
historical antecedents. The cognitive behaviorist would note faulty perceptions and inter-
Historical and Contemporary Perspectives on Traumatic Death 293
pretations of the death, poor coping skills, impaired communication, maladaptive habits,
and self-defeating emotional conflicts. A cognitive/behavioral therapist would examine
how the traumatic death impacted the person’s beliefs about self, other people, and the
world. Along with psychodynamic and attachment theories, cognitive/behavioral theory
stressed individual responses to traumatic death.
In contrast, systems theory focused on the entire family unit. In the 1950s, Murray
Bowen (1985) and others began focusing on the family when treating disorders such
as schizophrenia, with the view that illness in the person is the product of a total family
problem. In the family systems view, traumatic death disrupts the equilibrium of the
family unit, particularly if the death is of the breadwinner, the parent in a young family,
or the head of the clan. Traumatic deaths send an emotional shock wave through all
family members, even those who were not close to the deceased person, disrupt family
equilibrium, and cause breaks in communication between family members. However,
one type of death commonly considered traumatic, suicide, would not necessarily be
considered traumatic death from a systems view. Suicides are commonly followed by
prolonged grief and mourning reactions, but not necessarily an emotional shock wave
unless the person who died played an essential role in the family.
Psychodynamic, attachment, cognitive/behavioral, and systems theories laid the
groundwork for contemporary theories. Arising out of existential theory, newer theories
addressing traumatic death include narrative/constructivism and terror management.
Existentialism arose among a number of psychologists and psychiatrists in Europe
in the 1940s and 1950s as a different way to understand humans than the prevailing
psychodynamic theory. Associated with Ludwig Binswanger and Medard Boss in Europe,
existentialism was introduced to the United States in 1958 with the publication of
Existence: A New Dimension in Psychiatry and Psychology, edited by Rollo May, Ernest
Angel and Henri Ellenberger. Existentialism asks fundamental questions about the nature
of being human, and identifies four ultimate concerns: death, freedom, isolation, and
meaninglessness. Existentialists note that death is unavoidable, and at the deepest
levels humans respond to this knowledge with mortal terror. A core conflict is between
awareness of inevitable death and the simultaneous wish to continue to live.
To existentialists, any death plays a major role in internal experience, haunting the
individual as nothing else can (May & Yalom, 2005). To cope with this terror, individuals
erect defenses against death awareness. These defenses are based in denial, and include
an irrational belief in being personally special and having an ultimate rescuer. Any death
reminds people of their own mortality, but a traumatic death fundamentally challenges
their denial and causes them to be terrified.
To help people confronted with traumatic death, an existentialist would strive to
understand their current life situation and fears. The therapist would focus on personal
responsibility for their own lives, such as by saying “You mean you won’t face the death
instead of you can’t.” The therapist would emphasize life choices, helping persons
recognize that they themselves must generate and choose among options. The goal
would be to help persons who have experienced traumatic death live life authentically,
being open to nature, others, and self.
According to existentialists, human beings spend much energy trying to transcend
personal experience. The confrontation with mortality that arises in traumatic death may
have the negative effect of blocking transcendence efforts, pushing survivors to anxiety
or despair. Alternatively, the confrontation with mortality that arises in traumatic death
may have the positive effect of being an impetus to live life more completely and fully,
with increased mindfulness. Traumatic deaths can motivate survivors to choose how to
bear the ensuing suffering and focus on the positive aspects of the experience. In this
case, survivors might count their blessings and let go of the petty concerns that previously
held their attention.
One outgrowth of an existential understanding of traumatic death, constructivistic/
narrative theory, stresses people’s basic assumptions about the world and themselves.
These assumptions typically include believing that the world is predictable, controllable,
meaningful, fair, safe, and benevolent, and that, generally speaking, other people can
be trusted (Janoff-Bulman, 1992). Assumptions of a benevolent world and a worthy
self provide tremendous comfort. Traumatic deaths are out of the ordinary, directly
experienced, and seem to threaten survival and self-preservation. In traumatic deaths,
individuals confront their own mortality, recognize their fragility as physical creatures, and
recognize that the traumatic death does not readily fit their longstanding, fundamental,
comfortable assumptions about themselves and the world (Corr, 2005). Traumatic deaths
can shatter a person’s assumptive world.
An early proponent of constructivistic/narrative theory, Ronnie Janoff-Bulman,
focused on grief, mourning, and bereavement following the traumatic death of a loved
one. Janoff-Bulman (1992) maintained that a person who is unable to reconstruct or
reinvent a new assumptive world is vulnerable to pathological grief, mourning, and
bereavement, and may manifest the dissociative symptoms characteristic of posttraumatic
stress disorder. Dissociative symptoms involve a disruption in the usually integrated
functions of consciousness, memory, identity, or perception. For example, the person
may be unable to recall important personal information (dissociative amnesia), have
two or more distinctively different personalities (dissociative identity), or have persistent
or recurrent feelings of being detached from his or her own mental processes or body
(depersonalization).
Constructivistic/narrative theory notes that immediately after a traumatic death,
survivors may be confused about what exactly happened. They ordinarily need to
review the events in detail and may be frustrated and dismayed by having insufficient
information to formulate a coherent account of the experience. Nevertheless, a starting
point in placing the experience in the context of one’s life is developing a basic narrative
that includes some plausible causal explanation. The person who loses someone from
Historical and Contemporary Perspectives on Traumatic Death 295
traumatic death needs to achieve a sense of cognitive mastery and reestablish a sense of
safety and control for the future. The process of forming an account of a traumatic death
includes the questions, What happened? and How did it happen? (Landsman, 2002).
Because traumatic deaths fall outside cognitive schemas, violate assumptions, or shatter
illusions, they are especially likely to lead to a crisis of meaning.
Traumatic loss also disrupts the continuity of the person’s self-narrative, undercutting
the associated sense of identity. Faced with such profound invalidation, the person
struggles to attribute sense to the tragedy, find something of value in the loss, and
reconstruct a new, viable sense of self as protagonist (Niemeyer et al., 2002).
Another outgrowth of existentialism, terror management theory, was inspired by the
writings of cultural anthropologist Ernest Becker, who synthesized ideas from the natural
sciences, social sciences, and humanities to formulate what he hoped would become a
general science of humanity (1971). Terror management theory (Greenberg, Solomon, &
Pyszczynski, 1997) posits that humans, because of their sophisticated cognitive capacity,
experience self-consciousness. As a byproduct, people are burdened not only with the
knowledge that their existence will inevitably end and but also the recognition that they
can never fully anticipate or control potentially lethal events. This knowledge, juxtaposed
with a predisposition for survival, creates the potential for debilitating terror. To cope with
the terror, people construct cultural worldviews, humanly created symbolic conceptions
shared by group members that give the acculturated individual a credible and security-
providing depiction of reality. Cultural worldviews give meaning, order, and permanence
to existence; provide a set of standards for what is valuable; and promise some form of
either literal or symbolic immortality to those who believe in the cultural worldview and
live up to its standards.
Cultural worldviews promise literal immortality in their explicitly religious aspects
that directly address the problem of death and promise heaven, reincarnation, or
other forms of afterlife to the faithful who live by the standards. Cultural worldviews
promise symbolic immortality by enabling people to feel part of something larger, more
significant, and more eternal than their own individual lives through connections and
contributions to their families, nations, professions, and ideologies. Cultural worldviews
emphasize the psychological separation between humans and nature through a wide
variety of cultural practices, such as eating with utensils, avoiding public nudity, and
creating cultural artifacts, such as Stonehenge or the Sistine Chapel. Cultural worldviews
buffer against anxiety, thereby facilitating day-to-day functioning. People devote a
substantial proportion of activity to maintaining faith in their own cultural worldview and
the belief that they are personally meeting or exceeding the standards of that worldview.
By heightening the tendency to turn to their cultural worldview, traumatic deaths greatly
intensify efforts to maintain personal faith and self-esteem.
According to terror management theory, people turn to their cultural worldview
when facing the crisis of traumatic death. Different cultures mold their members’
experiences differently, but all cultures provide order, stability, meaning, and personal
enduring significance (Pyszczynski, Solomon, & Greenberg, 2003). Research indicates
that making death momentarily salient, such as by asking people to remember the death
of a loved one, increases liking for members of one’s own cultural group and increases
hostility for people who are members of a different cultural group. Any threat to cultural
worldview, such as the mere existence of people with different cultural beliefs, makes
people especially likely to respond by derogation, attempts at assimilation, or annihilation.
Traumatic deaths would be especially likely to have this effect.
From the perspective of terror management theory, the traumatic deaths that result
from a terrorist attack make two blows on mortality salience. First, those who suffer a
terrorist attack, such as the 9/ll plane crashes into the World Trade Center in New York
City, experienced spectacularly vivid and gruesome images of death and destruction.
Experiences such as these render personal vulnerability and potentially imminent mortality
profoundly salient. Second, an accompanying symbolic blow was the brutal assault on
major cultural symbols. The destruction of cherished symbols severely undermined the
functional integrity of the psychological shield than enabled people to feel secure. Thus,
terrorism heightened the explicit and implicit thoughts of death that a secure belief in a
cultural worldview ordinarily served to quell (Pyszczynski et al., 2003).
Exposure to traumatic death breaches the boundary of the self, inflicting a sense of
profound and enduring peril. Psychologically, this violence attacks value and meaning,
resulting in feeling unsafe, distrustful, and extremely guarded. In traumatic loss the
person experiences persistent panic about helplessness and annihilation and believes that
there is no safe future. No safe future means that no future is imaginable, a dilemma that
is intense and overwhelming (Kauffman, 2002).
Reactions to the traumatic death are multifaceted, encompassing a wide range of
powerful emotions, cognitive distortions, physical health problems, and psychosocial dif-
ficulties (Bonanno & Kaltman, 2001). Although most people experience such reactions
mildly or moderately and return to preloss levels of functioning relatively soon (Bonanno,
Moskowitz, Papa, & Folkman, 2005), around 10–15% go on to suffer from more dis-
abling or pathological grief reactions (Prigerson et al., 1995). Complicated grief includes
intense longing and searching for the deceased, intrusive thoughts of the deceased, pur-
poselessness and futility, numbness and detachment, difficulty accepting the death, lost
sense of security and control, and anger and bitterness over the death. Many bereave-
ment researchers and theorists now believe that complicated grief is different from de-
pression (Newson et al. , 2011; Prigerson et al., 1995), and the empirical and clinical
literature on complicated grief is expanding rapidly.
Different theories may define traumatic deaths somewhat differently; stress personal
history or current circumstances; and focus on individual, family, and/or culture. All
recognize, however, that individual reactions are unique and personal needs vary for
individuals who lose a loved one to traumatic death.
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Chapter 31
Life Span Issues and Traumatic Death

Karolina Krysinska and David Lester
The experience of death has changed dramatically over the centuries. Life expectancy
has increased tremendously, and this phenomenon, together with the decline in extended
families sharing the same residence, has resulted in people today having less experience
of death of any kind. For example, in one parish in London in the 1580s, for every 100
babies born, about 70 survived to their 1st birthday, 50 to their 5th, and only 30 to their
15th (Forbes, 1970). Life expectancy in the United States rose from the 40s in 1900 to
the 70s in 2000 (Lamb, 2003).
In the United States, wars have not occurred on American soil since the Spanish-
American War of 1898-1902. The Civil War in 1861-1865 resulted in roughly 215,000
battle deaths, and the Spanish-American War in only 385 battle deaths.1 On the other
hand, natural disasters have continued to take lives, although not to the extent as those
in the past. The most lethal earthquake (in San Francisco in 1906) resulted in about 500
deaths, the most lethal hurricane (in Galveston, TX, in 1900) resulted in roughly 7,000
deaths, and the most lethal set of tornadoes (in the South in 1884) resulted in about 800
deaths (Lamb, 2003). More recent disasters have not come near to breaking these records,
and so traumatic death from these sources has become less common over the years.
In other parts of the world, of course, wars and disasters still account for deaths in
large numbers. In these traumatic deaths, those of all ages can be victims and, in wars,
children can even be perpetrators. However, there are few statistics available on the
involvement by age in these traumatic deaths, although www.child-soldiers.org reported
(March 27, 2006) that there were up to 300,000 children actively involved in armed
conflicts. Epidemics of disease such as AIDS have also had a disproportionate effect
by age, in some countries leaving a large proportion of children orphaned, while other
catastrophes (such as famines) can result in higher mortality in children than in adults.
However, accurate numbers on the impact of these events are not obtainable.
1 The attack on the World Trade Center in New York City on Sept. 11, 2001, resulted in 2,948 deaths.
Accurate data on the incidence and experience of traumatic death are available
primarily for suicide and homicide.
Homicide
The Victims
The incidence of homicide shows interesting trends. Lester (1986) found that the peak
rate for being a victim of murder was most often being an infant in the 1st year of life,
closely followed by being a young adult (25-34 years of age). Those nations with a peak
rate for infants were, surprisingly, primarily nations in Western Europe such as Austria,
Denmark, England and Wales, Germany, Norway, and Switzerland.
Even in the United States, the distribution of the murder rate by age is bimodal, with
a secondary mode for infants. For example, in the year 2000 (www.who.int), the highest
rates for being a murder victim for men were 20.9 per 100,000 per year for men aged
15-24, 16.2 for men aged 25-34, 10.2 for men aged 35-44, and 9.8 for infants. For
women, the highest rate of being murdered was for infants (7.4), followed by women
aged 25-34 (4.1)
These data suggest that more modern nations manage to suppress the murderous
impulses of adults toward one another, but are less successful in suppressing the
murderous impulses of parents and other adults toward children. Since stepchildren are
murdered at a higher rate than children in intact homes (Daly & Wilson, 1996), the high
rates of divorce and remarriage may be responsible in part for the high risk of being
murdered for infants.
The majority of victims of homicide are male. Lester (1986) found that this mortality
statistic was so in almost every nation. Interestingly, Lester and Frank (1987) found that in
the United States, babies of both sexes are murdered at the same rate. The sex difference
in victimization appears only after the age of 1. For the 1st year of life, the sex of the baby
does not affect its risk of being murdered.
The Murderers
Just as the risk of being murdered is greatest for those aged 15-24, so the rate of
murdering is greatest in youths of that age. In the United States in 2002, the rates of
being a murderer by age ranged from 26.8 per 100,000 per year for those aged 18-24 to
1.4 for those aged 50 and older (www.ojp.usdoj.gov/bjs). The high rate of murdering by
youths accounts for the fact that the proportion of youths aged 15-24 in the population
is a very good predictor of the nation’s homicide rate (Holinger, 1987). Mortality statistics
indicate that African-American males in particular are more likely than other persons to
be the perpetrators and victims of homicide among youth and young adults in the United
States (Kochanek, Xiu, Murphy, Minino, & Kung, 2011).
Suicide
Fuse (1980) described three patterns in the distribution of suicide rates by age: (1) in the
Hungarian pattern, the suicide rate increases with age; (2), in the Japanese pattern, the
Life Span Issues and Traumatic Death 299
major peak is in old age but there is a minor peak in young adulthood; and (3) in the
Scandinavian pattern, the suicide rate is an inverted U-shape with a peak in middle age.
These labels for the patterns are not the best (for example, the pattern in most nations
varies by sex), but these are the most common patterns found.
Lester (1982) and Girard (1993) found that the level of economic development was
critical here. The suicide rates for men peak in old age for almost all nations. For women,
the peak rises from 55-64 to 75+ as the economic development of the nations decreases
until, for the poorest nations, the peak is found in women aged 15-24. In the United
States in 2000 (the latest year with data available on www.who.int), the suicide rates
peaked at 42.4 for men aged 75 and older and at 6.7 for women aged 45-54.
Rising Youth Suicide Rates
Recent decades have witnessed a number of claims of rising suicide rates in the youth of
the world, sometimes in particular ethnic groups such as African-Americans or the Maoris
in New Zealand. With the exception of India and China, this increasing youth suicide
rate is found primarily in male youths and not in female youths (Eckersley & Dear, 2002;
Pitman, Krysinska, Osborn, & King, 2012). Furthermore, often other age groups have
higher suicide rates than youths. For example, Lester (1998) noted that, although suicide
rates had risen in black males aged 15-24 in the United States, their rates were still lower
than the suicide rate of black males aged 25-34. Not all nations experienced this increase
in youth suicide. For example, the suicide rate for men aged 15-24 in Japan dropped from
40.9 in 1960 to 15.8 in 2000, in contrast to the United States where the rate rose from
8.1 in 1960 to 17.0 in 2000.
To explain the rising youth suicide rates in some nations, many commentators claim
that the lives of youths have become increasingly stressful and unpleasant (e.g., Eckersley,
1993). Eckersley and Dear (2002) saw the high rate of suicide in youths as “the tip of
the iceberg of suffering,” arguing that the majority of youths today have a harder time
developing identity and attachments than they did in times past.
In contrast, Lester (1990) used Henry and Short’s (1954) theory of suicide to argue
that, as the quality of life improves, suicide becomes more common (since there are fewer
external sources to blame for one’s misery, and the responsibility is internalized). Thus,
the rising youth suicide rate, Lester argued, was a result of the improving quality of life for
the youth. Indeed, worldwide, suicide rates are strongly associated with the quality of life
in nations—the higher the quality of life in a nation, the higher the suicide rate.
Differences in the Circumstances of Suicide By age
The motives and circumstances for suicide differ for younger and older suicides (Leenaars,
1989). Younger suicides are often reacting to interpersonal conflicts, whereas elderly
suicides are often reacting to personal problems. Maris (1985) found that younger
suicides (in their teens and 20s) more often had experienced suicide in their families, more
often had divorced parents, had lower self-esteem, and more often killed themselves
out of revenge. Lester (1994a) noted that older suicides use guns and hanging more
than younger suicides, more often have an affective disorder (whereas younger suicides
more often have a personality disorder), have experienced less recent stress, and are less
motivated by interpersonal conflicts. Young people might also be particularly vulnerable
to the impact of portrayal of suicide in the media, including suicide-related information
on the Internet and information about suicide methods (Hawton, Sauders, & O’Connor,
2012; Pitman et al., 2012).
Lester (1994b) found that the major theories of suicide differed in how appropriate
they were for particular age groups. For example, Binswanger’s (1963) theory was more
appropriate for the elderly suicides, while theories of Jung (1974), Murray (1981), and
Sullivan (1956) were less appropriate. Binswanger’s theory of suicide views the potential
suicide as preoccupied with the past, detached and cut off from the future, living an
empty and meaningless existence, experiencing dread and fear. In these circumstances,
suicide becomes a meaningful event and an act of liberation. These themes seem to be
more appropriate for the elderly than for younger adults.
Suicide in the Very Young
Traditionally, medical examiners and coroners did not classify deaths of those under the
age of 15 as suicides, but this practice has changed in recent years as clinicians have
documented suicidal behavior in younger and younger children (Pfeffer, 1986). For
example, Leenaars (1996) presented the case of a suicide attempt in a 4 year-old boy who
tried to hang himself. Orbach described family dynamics centered round “an irresolvable
problem” that might be related to suicidality in children (Orbach & Iohan-Barak, 2009).
Solution of an irresolvable problem might be beyond the child’s capacity, not attainable
because, as soon as a problem is solved, a new problem emerges, or because the possible
solutions are limited or unrealistic. It may also happen that the problem is disguised as a
child’s problem, while the real source of the problem, is another family member or the
problem is a result of a constellation of family factors.
The Impact on Survivors Across the Life Span
Those who experience the suicide of a loved one are called survivors, and the variation
of suicide rates with age affects survivors of different ages. Countries that have a higher
youth suicide will more often leave parents bereaved, while countries with a high suicide
rate in the elderly will more often leave children bereaved. Since survivors are at increased
risk of suicide, this has important implications for the suicide rate of later generations.
Many studies on the grief process after suicide are conducted with heterogeneous
groups of survivors, typically individuals in different kinship relationships with the deceased,
such as parents, children, other relatives, and acquaintances. The research usually focuses
on detecting similarities and differences between the psychosocial sequelae of different
types of deaths (Jordan & McIntosh, 2011a). There has been only a limited number of
studies looking at the grief process in different age groups and virtually no longitudinal
studies looking at the impact of suicide on the subsequent development of child and
adolescent survivors. For example, two types of reactions have been observed in children
whose parents died by suicide: (i) anger, hostility, and deviance, and (ii) sadness, guilt, and
withdrawal (Cain & Fast, 1996). No follow-up studies have tracked the developmental
trajectories and impact of these two types of reactions on psychosocial adjustment, and
psychopathology in later life remains unknown (Cerel & Aldrich, 2011).
Adult Suicide Survivors
The majority of studies have looked at the impact of suicide on adults, mostly the parents of
children and adolescent suicides and the spouses of suicides (Jordan & McIntosh, 2011b).
Suicide bereavement in these groups shares many similarities with reactions following
other types of death, although some themes, such as feelings of guilt, responsibility,
and blame for the death and feelings of rejection and abandonment by the deceased,
seem to be more prominent in suicide survivors. As more suicides among adults occur
in men than in women, the majority of spouse survivors are women. No studies have
looked specifically at suicide bereavement in adult men, although it has been found that
bereavement increases suicide risk in widowers, especially if the wife (or partner) died by
suicide (Agerbo, 2005).
Similar to parents who have lost a child in an accident or as a result of a chronic illness,
parent survivors often experience death-causation guilt, that is, guilt for what was done
or not done to prevent the death, child-rearing guilt related to their parenting style, and
illness-related guilt linked to the regrets for not providing best care for the child or not
being present when the child died. Parents bereaved by suicide are also sometimes blamed
by others and held accountable for the child’s death, are less-liked, and are perceived as
more emotionally disturbed than other bereaved parents (Jordan & McIntosh, 2011b).
Experience of a suicide of an adult child increases the risk of mental health problems
in older survivors and increases their suicide risk (Waern, 2005). On the other hand,
biographical accounts indicate that adult survivors of a parent’s suicide (including the
suicide of an elderly parent) often struggle with feelings of abandonment, guilt, and
anger; concerns about their own suicide risk and the risk of suicide in their families; and
issues related to identification with the deceased parent (Stimming & Stimming, 1999).
Child Suicide Survivors
In general, the grief reactions of children and adolescents under the age of 18 who have
lost a family member or a friend to suicide seem to be comparable to the grief experienced
by adolescents affected by other types of deaths (Cerel & Aldrich, 2011). Nevertheless,
studies conducted in clinical samples show that youth survivors of family suicide might
show behaviors such as substance abuse, suicidal ideation and behavior, and interpersonal
aggression. Survivors of sibling or peer suicide might experience traumatic grief reactions,
adjustment problems, depression, and posttraumatic stress disorder (Melhem et al., 2004).
The family dynamics of young suicide survivors before and after the death (especially the
resulting turmoil and psychopathology), the adolescent’s perception of the death, and
the manner in which the suicide was communicated to them seem to be important factors
impacting their ability to cope with the loss.
The Impact of Traumatic Death on Survivors
There has been little research on the grief process and possible posttraumatic stress in
those of different ages, primarily because the same psychological tests are not appropriate
for those of varying ages. What little research exists suggests that the grief associated
with trauma is similar in children and adults (Melhem, et al., 2004). Repeated exposure to
traumatic experiences appears to protect children from adverse outcomes (Garbarino &
Kostelny, 1996) but, again, comparative studies of children and adults have not appeared.
A study by Pfefferbaum, et al. (2006) on the reactions of children in Kenya after the
1998 bombing of the American Embassy in that nation reported that posttraumatic stress
was associated with physical exposure to the bombing, stress from other negative life
events, the type of bomb-related loss and subsequent losses, associations that would be
expected in adults exposed to the same trauma.
Regarding the impact of suicide on the survivors, there seems to be a gap between
personal accounts of individual survivors and the narratives of clinicians working with
the bereaved versus the outcomes of research studies (Grad, 2011). The former indicate
the uniqueness of bereavement after suicide. They focus on the experience of guilt and
shame, social stigma and isolation, as well as the desperate search for the meaning of the
death by the bereaved and his or her increased risk of suicide. The latter often find more
similarities than differences among different groups of the bereaved in regards to major
themes and the trajectory and duration of bereavement.
In an attempt to explain the differences observed in clinical practice and research
studies, Jordan and McIntosh (2011a) have proposed a framework encompassing
various levels of grief reactions. According to this framework, in suicide bereavement
one can recognize (i) reactions present in bereavement after all types of death, such as
sorrow and a yearning to be reunited with the deceased; (ii) reactions characteristic for
bereavement after unexpected deaths, such as shock and a sense of unreality about
the death; and (iii) elements of bereavement after violent deaths, such as the trauma of
finding a mutilated body and a shattered illusion of personal invulnerability. In addition to
these shared reactions, suicide survivors experience features that seem unique to suicide
bereavement, such as anger at the deceased for “choosing” death over life and a feeling
of abandonment.
Discussion
For suicide and homicide, causes of mortality for which many nations keep accurate
statistics, it is easy to show variations in their rates over the life span. There is less infor-
mation as to how the meanings, motives, and circumstances of these acts change over
the life span. Although a few trends were noted for the act of suicide, acts of murder
have not been studied in depth. Future research should explore how the phenomenon of
murder varies with age and, in addition, endeavor to collect more accurate data on the
experience of other forms of traumatic death by age. Comparative studies by age of grief
and posttraumatic stress after traumatic loss are also scarce, and this is another area that
needs to be explored in the future.
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Traumatic Death
David A. Crenshaw
The Impact on the Family System of Traumatic Death

The wake of traumatic loss can reverberate through a family system for multiple
generations (Kaplow, Saunders, Angold, & Costello, 2010; Schonfeld, 2011). Attachment
researchers have found that unresolved grief and trauma reduces the flexibility of adults
to access information about childhood and hampers their ability to reflect upon such
information in a coherent manner and reduces their likelihood of raising securely attached
children (Siegel, 2012). Trauma disrupts the emotional life of the family and in some
respects may halt the family’s lifecycle progress. In a family, for example, whose father
died in a drive-by shooting, the children may be acting like much younger children 7 years
later as if they were trying to turn the clock back to the time before the trauma occurred.
While the effects of the trauma may be registered in each family member in different
ways, typically no one completely escapes the impact. At the same time as the family
system is deeply affected by the devastating blows of trauma events, it also contains
the healing forces often referred to as posttraumatic growth that potentially enable its
members to resume full participation in life in due time (Bonanno, 2012).
The Family Systems Approach to Reconciling to a
Traumatic Loss
Families who have suffered a traumatic loss can’t realistically expect to fully return to the
preloss state. A more reasonable expectation is that they can reconcile to the traumatic
loss and gradually resume full participation in life, but such events cause families to be
forever changed. We should not assume that the family will be changed in a pathological
way. The process of reconciling to such a devastating loss may strengthen the family’s ties
and deepen the inner resources of the individual family members leading to posttraumatic
growth in the family (Berger, 2009). The art of family systems work is to conceptualize
and intervene within a relational framework. Important relational questions are pursued
such as, Who within the nuclear family and the extended family was most affected by
the trauma events? or What changes have been observed by other family members as a
result of the traumatic loss and who else in the family has been most affected by those
changes? Additional questions to pursue would include Who is most worried about the
most affected members in the family? and Who in the family is having the hardest time
right now? These relational questions stem from the assumption of family systems theory
that changes in one or more family members will impact the homeostasis (stability) of
the entire family unit, and this issue needs to be carefully considered and sensitively
understood in planning interventions in the family.
An example may be helpful in illustrating the ripple effect of change within the
family. If an inner-city family living in an economically deprived neighborhood suffers the
trauma of their 17-year-old son dying in a shooting on his way to school, his 13-year-old
sister may soon develop separation anxiety and refuse to leave the house, even to go to
school. It would be logical to assume that the younger sister fears leaving her house and
going to school because of the murder of her brother while he was on his way to school.
By asking relational questions, however, it is learned that while those fears are part of the
explanation of her symptoms, it is only part of the story. It soon becomes apparent by
pursuing the trauma effects on different family members, that the daughter’s main worry
is about her mother who has been clinically depressed since her brother’s death. She is
afraid to leave her mother alone in the house. Further exploration leads to the revelation
that her worst fear is that her mother might commit suicide if she were left alone. If the
daughter’s symptoms had been viewed simply as part of a posttraumatic stress disorder
(PTSD) without the relational component the main underpinning to her fears would not
have been addressed.
Thus, the family systems approach to traumatic loss honors the centrality of
relationships and attachments in our lives and the focus is on the family unit as a whole.
The goal is to determine who else in the family is connected or affected by the traumatic
event. A valuable resource for all who work with traumatic loss in the family context is
Living Beyond Loss: Death in the Family, Second Edition (Walsh and McGoldrick, 2004).
Families need education about trauma issues so they can be enlisted as an ally and a
partner in trauma treatment. Recent research highlights the important role of families in
coping with traumatic death including helping members find meaning in the loss (Davis,
Harasymchuk, & Wohl, 2012). Families who are able to find congruent and shared
meaning in the wake of devastating loss are more likely to experience posttraumatic
growth.
The Trauma-Focused Treatment Approach for
Children and Families
An empirically derived treatment model for childhood traumatic grief (CTG) has been
developed that includes a parental treatment and family sessions as well (Cohen,
Mannarino, & Deblinger, 2006). The CTG model builds on the groundbreaking work of
The Family, Larger Systems, and Traumatic Death 307
Pynoos and Nader (1990) in helping children and families exposed to traumatic death.
CTG is defined as a condition in which the trauma symptoms such as intrusive images
and memories interfere with the ability of children to negotiate the normal grieving
process. The treatment model includes addressing both grief and trauma components
and involves separate sessions for the children and the parents but some family sessions
as well to facilitate sharing of the trauma narrative within the potentially healing context
of the family. The treatment protocol is relatively short-term (approximately 16 sessions).
A recent attempt to build on the solid foundation of the work of Cohen, Mannarino
and Deblinger to develop strategies for children and families who have suffered multiple
traumas and losses and who may require a more extended treatment intervention is
described in the current author’s previous writing (Crenshaw, 2005). The strategies
consist of projective drawing and storytelling strategies that offer clinicians tools to deal
with such seriously impacted youth and families. These techniques offer the advantage
of approaching the trauma events gradually in the relative safety offered by symbolism
and metaphor.
Mass Trauma and Death—When the Unthinkable Happens
The events of Sept. 11 and the more recent impact of Hurricane Katrina reminds us in a
shocking and horrifying way that trauma can occur on a massive scale even on our own
soil, not necessarily in some distant part of the world. Such events are so horrifying they
are unthinkable.
Kastenbaum (2004) notes that mainstream thanatology has focused its efforts on
improving the understanding, care, and social integration of people who are exposed to
life-threatening illness or bereavement, but that in light of the large-scale disasters the
world has recently witnessed, it may now be time to expand the vision, scope, and mission
to include large-scale death. He discusses the 9/11 terrorist attacks as an example of
mass death with complex correlates and consequences. A useful reference for counselors
involved in mass disasters is the book, Mass Trauma and Violence: Helping Families and
Children Cope (Webb, 2004). The book describes a range of effective interventions to
help children and families cope with major traumatic experiences such as community
violence, war, and terrorist attacks.
Issues Faced by Survivors
The 9/11 terrorist attacks led to a number of studies of the effects on survivors but has
resulted in more questions than answers. In a review of the studies by Eisenberg and
Silver (2011), the researchers concluded that the emotional impact for most children,
except those who witnessed or suffered direct losses from the attack, were transitory.
Similarly, Bonanno and colleagues (2010) concluded from a review of the research that
among youth, while elevated symptoms are common in the immediate aftermath of a
high-impact disaster (first few months), chronic elevations in symptoms rarely exceed
30% of the youth sampled. The likelihood of increased psychopathology is found with
preexisting vulnerabilities or actual direct exposure. Bonanno and colleagues stated that
a combination of risk and resilience factors, including contextual factors and personality,
also are contributing factors.
Of course, the severity of the trauma, what is sometimes called in the research the
dose gradient, is a crucial factor (Crenshaw, 2013). When former Ugandan child soldiers
were studied, for example, only 27% exhibited no signs of PTSD (Klasen, Oettingen,
Daniels, Post, Hoyer, & Adam, 2010). These researchers found that perceived spiritual
support (the belief that God had not abandoned them) was a significant contributor to
resilience in these children and adolescents and in fact nearly doubled the likelihood of a
resilient outcome.
Issues Faced by Rescue Workers
Those who courageously and selflessly rush to scenes of mass disasters or terrorist
events to help others are faced not only with physical dangers but mental health risks
as well. A study of disaster workers following 9/11 found that perceived safety is an
important factor in health and the ability to work after traumatic exposure to disaster
events (Fullerton, Ursano, Reeves, Shigemura, & Grieger, 2006). The study examined
symptoms of PTSD, depression, and perceived safety in disaster workers 2 weeks after
the 9/11 terrorist attacks. The findings indicate that perceived safety was lower in those
workers with greater exposure and was associated with greater symptoms of intrusion
and hyperarousal but not avoidance, depression, and peritraumatic dissociation.
Another study suggested the advisability of assessing and following up the partners
of rescue workers at the scenes of disasters (Pfefferbaum, Tucker, North, Jeon-Slaughter,
Schorr, Wilson, & Bunch, 2006). They evaluated 24 female partners of firefighters who
helped in recovery efforts with the terrorist bombing in Oklahoma City. The partners
were assessed 43 to 44 months later. Most of the participants with postbombing
symptoms suffered from preexisting conditions. 40% met both intrusive reexperiencing
and hyperarousal criteria. More than half met the criteria for hyperarousal criteria on
at least one measure. These researchers recommend that partners of disaster recovery
workers be assessed for mental health and physiological consequences related to their
indirect exposure since these symptoms may persist years after the event, even in the
absence of a diagnosable psychiatric condition.
An important study of first responders to the disaster of Hurricane Katrina included
1,382 people who were assessed at point one, 6 to 9 months after the disaster, and
then again at point two, 13-18 months after the hurricane (Osofsky et al., 2011). The
results revealed that 10% of the responders had significant levels of PTSD, 25% reported
significant levels of depression, more than 40% reported increased alcohol use, and 41%
reported increased conflict with their partner. A statistically significant decrease in the
symptoms of PTSD or depression was not found after 18 months following Katrina.
The Family, Larger Systems, and Traumatic Death 309
Issues Faced by Counselors

Counselors intervening in disasters now have some guidelines to intervention called
psychological first aid based on evidence-informed principles. Hobfoll and his colleagues
(2007) assembled a worldwide panel of experts on intervention with victims of mass
disaster and identified five empirically supported principles to guide intervention. The five
principles are promoting (1) a sense of safety, (2) calming, (3) a sense of self and community
efficacy, (4) connectedness, and (5) hope. In addition, eight core actions are included in
Psychological First Aid: Field Operations Manual (Brymer, Jacobs, Layne, Pynoos, Ruzek,
Steinberg, et al., 2006). The eight core actions are contact and engagement, safety and
comfort, stabilization, information gathering, practical assistance, connection with social
support, information on coping, and linkage with collaborative services (Allen, Brymer,
Steinberg, Vernberg, Jacobs, Speier, & Pynoos, 2010). The perception of providers
undergoing the training in psychological first aid was that they gained confidence
in working with both children and adults in disaster situations. Effective training and
evidence-based guidelines can help to combat the stress of this challenging work.
Counselors are human beings with their own history of loss and perhaps trauma
and concerns for their own safety and that of their families at the same time they strive
to be fully emotionally available and responsive to the victims of disasters. This complex
phenomenon presents both a unique challenge and an occupational hazard. Compassion
fatigue is the term elaborated by Figley (1995a) as a variant of secondary trauma
occurring in those helpers who become emotionally overwhelmed in their efforts to
provide comfort, compassion, and support for others facing traumatic stress. Figley (1995)
defined compassion fatigue (CF) “as the formal caregiver’s reduced capacity or interest in
being empathic or bearing the suffering of clients and is the natural consequent behaviors
and emotions resulting from knowing about a traumatizing event experienced or suffered
by a person”(p. 7). Figley views CF as consisting of two components: secondary trauma
and job burnout (Adams, Boscarino, & Figley, 2006).
It is crucial that those who do this heroic work make a priority of self-care that
involves maintaining a life balance. Aspects of such life balance include giving and
receiving nurture and support in loving relationships, the joy of engaging in passionate
hobbies and a variety of relaxing interests, eating properly, getting adequate rest, and
exercising regularly. (See Webb, 2004, for other self-care suggestions).
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Traumatic Death
David K. Meagher
Introduction
Events in the recent past have resulted in the need for grief counselors to become more
knowledgeable of the impact of trauma on the grief process. Human-caused events such
as the bombing of the federal building in Oklahoma; the terrorist attack on the World
Trade Center in New York and the Pentagon building in Washington, DC on Sept. 11,
2001; the underground bombings in London, England, on July 7, 2005; and the train
bombings in Madrid, Spain, on March 11, 2004, are not alone in demonstrating the need
to prepare more effective trauma-grief support personnel. Natural events such as the
2004 Indian Ocean tsunami, Hurricane Katrina of 2005, the Haitian earthquake in 2010,
and the 2011 earthquake and tsunami in Japan have also resulted in populations in need
for trauma support resources.
The purpose of this chapter is to introduce the reader to a number of legal and ethical
issues around the diagnoses of, treatment strategies for, and research into trauma and
traumatic grief. In addition, a brief discussion of the rights of the victims of traumatic deaths
will be presented. An awareness of the issues should provide sufficient motivation to those
skilled in grief counseling but not in trauma support to further their studies and training
prior to offering assistance to individuals who have experienced a traumatic event.
Definitions
A first step in a discussion of the ethical and legal issues in traumatic death must be the
task of arriving at universal definitions of trauma, traumatic death, and traumatic grief.
This agreement is necessary in order for there to be:
1. Objective criteria for assessing a response to a loss;
2. Reliable means of identifying needs of the affected individuals;
3. Valid instruments for data collection; and
4. The development of effective intervention techniques.
Trauma is defined as a “direct personal experience of an event that involves actual or

threatened death or serious injury, or other threat to one’s physical integrity; or witnessing
an event that involves death, injury, or a threat to the physical integrity of another person;
or learning about unexpected or violent death, serious harm, or threat of death or injury
experienced by a family member or other close associate” (APA, 2000, p. 461).
It may be said that trauma is defined by the experience of the individual. Allen (1995)
writes that there are two components to a traumatic experience: the objective and the
subjective. “It is the subjective experience of the objective events that constitutes the
trauma…” (p. 14).
Traumatic event is an experience that causes physical, emotional, psychological
distress, or harm. It is an event that is perceived and experienced as a threat to one’s
safety or to the stability of one’s world. The response to such an event must involve
disorganized or agitated behavior (APA, 2000).
Traumatic grief is defined as a response to a loss that included the elements of
sudden, perhaps horrific, shocking encounters. Traumatic grief is one in which the griever,
in addition to reacting to the loss of a loved one, “…is preoccupied with the scene of the
trauma, wishes to avoid reminders of the event, and is hypervigilantly aroused by and
oriented to threat, danger, or the return to a similar threat” (Jacobs, 1999, p. 16).
“When the circumstances of a loved one’s death are traumatic (as in cases of death
through homicide, suicide, or disfiguring accident) or when the loss itself violates the
‘natural order’ (as in the untimely death of children or young adults), then additional
challenges to the survivor’s adaptation arise beyond those associated with bereavement
per se. As with the basic impact of bereavement, these (challenges) can be observed on
both biophysical and psychosocial levels” (Neimeyer, 2002b, p. 936).
Although virtually all deaths may be perceived as personally traumatic, five factors
are usually considered necessary for the diagnosis of traumatic death:
1. Suddenness and lack of anticipation;
2. Violence, mutilation, and destruction;
3. Preventability and/or randomness;
4. Multiple deaths; and
5. The surviving mourner’s personal encounter with death, where there is either a
significant threat to personal survival or a massive and/or shocking confrontation
with the death and mutilation of others.
In addition to the above definitions, the professional literature also includes other
syndromes describing difficult responses to death loss. Prigerson, Horowitz, Jacobs,
Parkes, Asian, et al. (2009) employ the term prolonged grief disorder (PGD) for a loss
response associated with significant impairment. It is the position of these authors that
PGD is often referred to as complicated grief, traumatic grief, or complicated grief
disorder. These responses are different from major depressive disorders in the Diagnostic
Statistical Manual of Mental Disorder (DSM) and the International Statistical Classification
of Diseases and Related Health Problems (ICD).
Ethical and Legal Issues in Traumatic Death 313
Pathological grief has been defined as a grief response that becomes a threat to the
health and well-being of the person. Within this model, inhibited grief, delayed grief, or
chronic grief are the defining elements.
Complicated grief or complicated bereavement is often the term used to describe a
person’s failure to accept the fact of the loss (Rando, 1993). Complicated grief brought
on by the death of a significant other may evoke a traumatic grief syndrome (TGS). TGS,
according to Neria and Litz (2003), is a pathological response to the loss of a significant
other. TGS, these authors posit, is comprised of two sets of symptoms: separation distress
symptoms and traumatic distress symptoms.
The DSM IV (American Psychiatric Association (APA), 2000) lists five basic criteria
for posttraumatic stress disorder: the stressor event, a reexperiencing of symptoms,
avoidance behavior, a numbing of general responsiveness, and arousal. The disturbance
must cause clinically significant distress in significant areas of life (APA, 2000).
Although differences between PTSD and TGS have been reported in the literature
(Courtois, 2004; Davis, 1998), these differences are more theoretical than empirical in
nature. Clearly, “more exploration of the overlap between trauma and loss is needed,
including the processes involved, the nature of the responses, and theoretical or
conceptual notions that might link these two areas of study addressing some of the most
difficult experiences that we, as humans, must endure” (Green, 2000, p. 14).
Legal Issues
A major legal problem inherent in the area of traumatic grief is a lack of agreed-upon
definitions that permit the development of reliable and valid tools of diagnoses and
assessment.
Misdiagnosis and inappropriate techniques of intervention can cause harm to the
grieving person. Incidents of harm are considered a major reason for the institution of
malpractice suits against trauma specialists and grief counselors.
If there are not clear distinctions between traumatic grief syndrome and posttraumatic
stress disorder, as inferred earlier, then the chances of a misdiagnosis and subsequent
inappropriate intervention techniques are increased. Significant overlap in the signs and
symptoms of normal grief, traumatic grief and posttraumatic stress syndrome make it
very difficult to arrive at a valid diagnosis.
Other legal issues that will be discussed with ethical concerns later in the chapter
include:
1. Diagnosis and treatment of children;
2. The rights of victims of traumatic deaths, including the rights of crime victims;
and
3. Informed consent issues in trauma research.
When Pitman and Sparr (1998) write that the use of PTSD as a diagnosis of a
psychological disorder has severe diagnostic reliability and validity, they might have
also been describing issues of TGS. They identify common errors leading to both the
overdiagnosis and underdiagnosis of PTSD. The following table outlines these errors.
PTSD Diagnoses Errors

Overdiagnoses Errors Underdiagnoses Errors
Failure to separate expectable emotional Characterization of PTSD symptoms as normal
distress from the mental disorder reactions to a traumatic event
Applications of fewer criteria than are Basing opinion on inadequate, open-ended
required for the proper diagnosis interviews without an adequate attempt to
explore details of the traumatic event and
subsequent symptomatology
Failure to consider the contribution of Idiosyncratic thresholds for diagnosis.
earlier, unrelated traumatic events to the
client’s illness
Failure to diagnose preexisting Failure to acknowledge that the diagnosis of
psychopathology PTSD may be made despite the presence of
major vulnerability factors
Failure to identify a positive family history of Mistaking predisposition for preexisting
mental disorder that may point to another psychopathology
etiology
False attribution of the client’s symptoms to
other life events
(Pitman & Sparr, 1998, pp. 2-3)
Diagnostic Issues
The need for valid, reliable instruments of assessment is substantial. Although Baldwin,
Williams, and Houts (2004) support the use of current PTSD diagnostic tools, they do
remind the diagnostician that the assessment scales are based primarily on subjective
descriptions by the victim. Since many symptoms are self-reported, diagnoses often rely
on a client’s description of a traumatic event experience. Failure to review all of the
client’s symptoms may lead to a form of diagnostic error called confirmatory bias (Koch,
2001). Knowing that the client experienced a traumatic event, a counselor may conclude,
without a complete examination, posttraumatic syndrome disorder.
Simon (1995b) raises the legal issue of the objective validity of the instruments. It
is his position that both the psychological and physiological scales designed to objectify
the diagnosis of PTSD are based on subjective accounts. With regard to the physiological
measures, the results may indicate the presence of a general stress response not connected
to a traumatic experience (Simon, 1995b).
Questions concerning the ability to distinguish among the varied responses to a
loss need to be answered so that appropriate necessary forms of intervention may be
utilized. The issue becomes more clouded when the concepts of complex posttraumatic
stress disorder (CPTSD) and disorders of extreme stress not otherwise specified (DESNOS)
symptoms not addressed by a PTSD diagnosis, is added to the mix of possible trauma
responses. Instruments designed to diagnose PTSD may not reveal the complexities of
CPTSD/DESNOS (Courtois, 2004).
A number of problem areas reducing the reliability of assessment instruments to

diagnose CPTSD/DESNOS have been identified. They include:
1. Difficulties in controlling affective impulses;
2. Issues associated with maintaining attention;
3. Changes in self-perception;
4. Significant changes in a person’s belief system;
5. Inabilities to trust or feel close to others;
6. Onset of medical problems affecting all major body systems; and
7. Feelings of hopelessness and a lack of belief that others can understand them or
their suffering (Courtois, 2004, p. 414).
Ethical Intervention Issues
Certain issues are both ethical and legal in nature. For example, confidentiality is both
an ethical concept that often serves to protect the client or patient and a legal term that
refers to a client’s statutory right to have confidential information protected. National and
state mental health associations have developed and continue to refine ethical standards
in an attempt to create a model code of conduct to ensure the protection of patients’
rights. These standards are also promulgated to provide guidance for the profession and
help prevent patient exploitation and impairment of therapists’ judgment.
Two issues critics raise concerning the effectiveness and timing of trauma counseling
(Dyregrov, 2004) are:
1. What determines the need for professional assistance? and
2. Does professional assistance help (empower) or harm (disempower) a person
experiencing a traumatic reaction to a loss?
There have been several strategies offered for defining the limits of professional
assistance. They range from not intervening unless the affected individual requests help
to offering immediate debriefing assistance with or without long-term follow-up. Any
strategy of intervention must have, at a minimum, the following goals:
1. Normalizing the situation,
2. Minimizing recovery time,
3. Reducing distress,
4. Restoring functioning, and
5. Mobilizing resources (Dyregrov, 2004).
Dyregrov and Regel (2012) address the question of the timing of interventions.
They suggest that in place of what is termed watchful waiting a more proactive earlier
intervention tailored to the needs of clients may be more beneficial.
When selecting a treatment strategy, issues of age, severity level, type of trauma
response, and acuteness of the response must be taken into consideration. Overall,
the most highly recommended techniques are anxiety management, cognitive therapy,
exposure therapy, and psychoeducation (Dyregrov, 2004; Marotta, 2000).
Maguire (1997) suggests a recovery bill of rights for trauma survivors encompasses
four major areas of legal and ethical concerns: (1) personal authority… the right to
manage and direct one’s recovery; (2) personal boundaries …the right to have one’s
person respected and to be permitted to accept or reject any and all suggestions for
treatment; (3) communication… the right to clear explanations and respect for one’s
feelings; and (4) intervention…the right to choose one’s own counselor, to expect that
the counselor is trained in trauma treatment, and he or she will abide by the laws and
ethics of confidentiality. Clients should expect that they would be taught skills that lessen
the risk of retraumatization.
It is essential that grief counselors identify best practices for providing trauma loss
services. The counselor must develop practice guidelines so as to demonstrate not only
the effectiveness but also the ethics of the practice.
The Council for Accreditation for Counseling and Related Standards (CACREP)
has developed a set of standards for counselors involved in the theory and practice of
traumatology. Five general guidelines to assist counselors to be in compliance are:
1. Know the organizations and government agencies and their purposes.
2. Understand the major principles of trauma counseling.
3. Provide trauma counseling only to the extent of one’s competence.
4. Develop knowledge and practice competencies in disaster response, trauma
counseling, and crisis intervention if one is planning to train others to practice.
5. Recognize that disaster and trauma counseling is a growing specialty that needs
research and study to insure outcome-based practices (Webber & Mascari, 2009).
Intervention With Children
Children who have experienced a traumatic event present special legal and ethical issues,
and what little information is available is sometimes contradictory. For some, terrorism is
not a discrete event for children. It is a continuous stressor. This position holds that children
who develop PTSD after exposure to terrorism often continue to manifest symptoms of
PTSD over time, even though the terrorist threats are no longer present (Street & Sibert,
1998). Fremont (2004) suggests using the term continuous stress syndrome for children.
However, Henry, Tolan and Gorman-Smith (2004) found no differences between pre- and
post-September 11 in children in symptoms of traumatic grief or PTSD; specifically on
measures of child anxiety, depression, and feelings of safety. PTSD diagnostic measures
may not fully capture the spectrum of posttrauma symptom among children (D’Andrea,
Ford, Stolbach, Spinazzola, & van der Kolk, 2012).
There are many serious methodological problems inherent in, and specific to,
research on children and trauma: (1) current diagnostic formulations of PTSD may not
be operationally sound when applied to children as they lack age-appropriate diagnostic
sensitivity and specificity; (2) symptom characteristics unique to PTSD can affect reliability
and validity estimates of trauma measures; (3) few studies of trauma and children have
utilized control groups, and specific, trauma-related studies have assessed effects on small,
unique samples making generalization difficult; and (4) few treatment outcome studies
incorporate designs with adequate empirical rigor to explore effectively the respective
influence of possible moderator variables (e.g., race, age, or gender) or mediator effects
(e.g., treatment compliance or family support (Cook-Cottone, 2004).
D’Andrea, et al., (2012) suggest “…the need for the development of a construct,
developmental posttraumatic adaption, that could serve as a basis for diagnosis (in children
and adolescents) if research supports specific cutoffs for a categorical distinction between
clinically significant symptoms and normative levels of developmental posttraumatic
adaptation (p. 191).
The signs and symptoms of PTSD in children can vary dramatically with respect to
the severity, chronicity, and number of symptoms (Chibbaro & Jackson, 2006; Faust &
Katchen, 2004). Professional interveners must distinguish between an unanticipated
single event and repeated exposure characterized by massive denial, psychic numbing,
and personality problems. These manifestations may be consistent with classic PTSD
symptoms (Cook-Cottone, 2004; Faust & Katchen, 2004). The professional caregiver/
counselor must modify the treatment employed, especially with the child’s grief reactions.
Grief work must be conducted prior to addressing the PTSD reaction and the processing
of grief should be revisited periodically.
When becoming involved with children who are experiencing signs of a traumatic
response, or when designing studies to involve direct contact with children, consideration
must be given to their attention span, level of development, and literacy skills. Of course,
working with children requires consent of the child and informed consent of an adult
caregiver. The child’s consent is not sufficient to begin intervention or data collection but
it should be necessary to begin the process. Even assuming that parents or guardians
make decisions that are in the best interests of their children does not absolve counselors
or researchers of their responsibility to ensure that no harm is caused by the intervention.
Cunningham (2003) cautions potential interveners not to ask children to participate
in a trauma study that is not in the best interest of the child. Such studies should be used
when the information cannot be gained in any other way. If a child is still at risk, the
appropriate social services consistent with local ordinances should be notified.
Other Ethical Considerations
Trauma events do not leave a great deal of time or resources for negotiations between a
caregiver and a client about the types of assistance wanted or required. However, those
impacted by a trauma event should not be expected to accept intervention strategies
that do not meet their needs. It is the responsibility of the intervener to be attuned to
the cultural needs and developmental concerns of the client. Assistance offered must be
independent of any political agenda and be calibrated to the people and demands in each
unique situation (Flanagan, 2007).
Trauma intervention plans require a flexible approach that counters assumptions
and biases about victims, assures a favorable ethical cost-benefit ratio, and improves the
benefit to the survivors of traumatic stress (Newman, Risch, & Kassam-Adams, 2006).
Victim/Survivor Rights
Unlike many other countries, the United States does not have a national legislated set
of legal rights for trauma or crime victims. A constitutional amendment to protect the
rights of crime victims was introduced into Congress in 2003; however, the proposal was
referred to committee and never returned for a vote.
Every state has a victims’ bill of rights. These rights generally include the rights
associated with criminal cases and deal with issues of protection, intimidation, notification,
victim input at bail hearings, plea bargaining, sentencing, parole, the use of victim trauma
as evidence, and due process rights. What remains unaccomplished is any comprehensive
cataloging or interpretation of these cases. As a result, it is unclear whether there can
be any certain prediction about how victim rights will eventually be interpreted in the
criminal justice system (Young, 1997).
A summary of rights that have been suggested include the rights to be:
1. Treated as human beings, not as evidence;
2. Provided with information about case status and what to expect at trial;
3. Evaluated as to the onset of any psychological trauma the victim may be
experiencing;
4. Permitted to have someone present at the trial on whom the victim can count
for emotional support;
5. Informed and consulted with about potential plea bargain or diversion procedures;
and
6. Given the opportunity for input into proceedings when possible, including the
opportunity to make a victim impact statement (Kilpatrick, 1986; Jackson, 2003).
A few states have enacted measures allowing victims to recover damages resulting
from acts of terror. These measures generally allow victims and their families to recover
damages for emotional distress and any other relief that the local or state courts may deem
necessary. Kilpatrick and Resnick (1993) suggested guidelines for criminal justice and
victim service professionals that can increase their understanding of, and development of
policies related to, the mental health treatment of crime victims include:
1. Trauma victims and their family members may experience immediate, short-term,
and long-term trauma-related mental health problems that require treatment;
2. Considerable individual variations exist among trauma victims in the types of
psychological injuries they are likely to sustain and how long it will take them to
reconstruct their lives, with or without treatment;
3. For many victims, elimination of trauma-related psychological injuries might not
be a realistic treatment goal. Rather, helping victims to learn to cope is the main
objective; and
4. At times of stress (including criminal justice system-induced stress), victims are
likely to have exacerbations of psychological injuries.
The international community has agreed to the 1985 UN Victims’ Declaration that
includes the following statements relevant to this discussion.
1. The right to be treated with respect and recognition.
2. The right to be referred to and receive adequate support services.
3. The right to give input to any decision making.
4. The right to protection of physical safety and privacy.
Research Issues
A complete discussion of all the legal and ethical issues of trauma research is beyond the
scope of this chapter; a brief look at some of the more prevalent issues will be presented.
Methodologies to help subjects tell their stories in a respectful manner need to be
created. Instruments designed for a trauma study should be developed and employed.
Trauma research should be grounded in the needs of the study participants, to help them
receive more effective service. Seven trauma research principles are outlined below:
1. The research must adhere to all standards for the ethical treatment of research
subjects including informed consent, voluntary participation, confidentiality, and
anonymity;
2. The research should be gender, culturally, and developmentally sensitive in its
design and conduct;
3. The researchers must be prepared to provide appropriate referral or treatment
of participants who are identified as being in crisis or needing a mental health
intervention;
4. The researchers must treat research subjects with respect, attend to their privacy
interests, and chose methodologies that are not unduly demanding of their time;
5. Those conducting the study should communicate and distribute research results
in language and formats which are accessible to practitioners, clients, policy
makers, and legislators;
6. In designing and conducting the study, the researchers need to identify the
implications of their findings for legislative and policy reforms and work
cooperatively with community partners to communicate those implications to
relevant officials;
7. The researchers should consider the potential for unintended consequences of
laws, policies, and programs as well as the benefits (Cunningham, 2003, p. 3).
Summary
Before strategies of intervention or research of trauma response can begin, there must
be an agreement on what is being treated or studied. Clear distinctions must be made
among normal grief, complicated grief, traumatic grief syndrome, and posttraumatic stress
disorder. Many legal problems arising from trauma intervention programs evolve from
what is sometimes perceived as the subjectivity of the employed measures of diagnoses.
In addition to the need for agreed-upon bases for professional actions, there are
special areas of concern when children are the object of support and study. Informed
consent and privacy issues may be more problematic when children are involved.
A number of factors influencing trauma response have not been addressed; i.e.,
the impact on victims when experiencing difficulties with such organizations as the
U.S. Federal Emergency Management Agency, Social Security Administration, insurance
companies, and/or banks. In addition, studies of the grief responses of family members
who have lost a loved one in an act of capital punishment or other socially stigmatized
ways may reveal unique legal and ethical considerations. While studies addressing these
issues were not found in the literature, the professional caregiver must be cognizant of
their potential influence on traumatic grief.
321
Death Education
Chapters 34 – 39
Chapters 34 through 39 focus on death education. The Body of

Knowledge Committee defined this major category of thanatology
knowledge in this way: formal and informal methods for acquiring
and disseminating knowledge about dying, death, and bereavement.
The chapters in Part 6 focus on death education in terms of these

indicators: culture and socialization, religion and spirituality, historical
and contemporary perspectives, life span issues, the family and larger
systems, and ethical and legal issues. All the chapters in Part 6 are
revised from chapters that originally appeared in the first edition of
the handbook.
323
Chapter 34
Culture, Socialization, and

Death Education
Lynne Ann DeSpelder and Albert Lee Strickland
As the television camera was turned off, the interviewer turned and asked quietly: Why
are Anglo funerals so serious? Answering this question requires cultural competency,
that is, the ability to explore, consider, and respond appropriately to cultural differences.
An individual’s values, beliefs, and worldview are significantly influenced by his or her
culture. Culture can be defined as “all that in human society which is socially rather
than biologically transmitted” (Marshall, 1994, p. 104; see also Brenneis, 2002; Erickson,
2002). Many different elements go into making people who they are; culture is just one
of these elements (Weaver, 2005). It is nonetheless a key influence in guiding thinking
and shaping behavior (Weaver, 2005).
Reading this chapter, you have an opportunity to add to your knowledge and gain
skills relative to culture, socialization, and systems for dealing with death. In Greek
mythology, Thanatos was the personification of death. Our word thanatology, the
study of death, is a linguistic heir of the Greek term. Within the realm of thanatology,
cultural competence implies being knowledgeable about the cultural scripts that influence
persons in a given culture, being informed about cultural differences, and being able to
ask culturally sensitive questions that acknowledge another person’s belief system and
values regarding death and dying, end-of-life choices, and grieving (Hayslip, Patrick, &
Panek, 2011, p. 294).
Because of our mortality, death has an important role in shaping the organization
and experience of life. A person’s cultural identity is developed through a process termed
socialization, a topic that is touched on in several other chapters in this handbook. The
process of socialization involves a variety of influences, beginning with the family and
extending to the mass media and the global transcultural environment. Although the
primary phases of socialization occur during the years of childhood, this process continues
lifelong. How we are socialized is significantly tied to the fact that we will one day die
(Settersten, 2002).
As Italian thanatologist Francesco Campione (2005) points out, death is not only a
topic for reflection, study, and research; it is also an existential problem, which touches
every aspect of human existence and every field of knowledge. Kastenbaum (1993, p.
75) says that, although the term thanatology is usually defined as the “study of death,”
it is perhaps better defined as “the study of life with death left in.”
One of our jobs as thanatologists is to provide our clients and students with materials
to deepen their intellectual understandings about death. At the same time, we must strive
for a balance between the cognitive and the affective aspects of death education. Both
the intellectual and the emotional aspects of death apply to our endeavors (DeSpelder,
2006; DeSpelder & Strickland, 2004). Further, death education takes place across the
life span. Socialization experienced in childhood and adolescence is not enough to meet
the demands of the adult years (Settersten,2002). In a fast-paced and ever-changing
world in which life spans seven or more decades, individuals must prepare for successive
resocialization as they move through adult life (Settersten, p. 34). Re-socialization, a term
that refers to the “uprooting and restructuring of basic attitudes, values, or identities,”
occurs when adults take on new roles that require altering or replacing their existing values
and modes of behavior (Goodman, 1992, pp. 84-85; see also Etzioni, 2000). Examples
of occasions that may necessitate such secondary socialization include starting a new job,
getting married, having children, and surviving the death of a mate. Widowhood involves
changes in many areas of life, as new roles and activities are taken on (Silverman, 2004).
Attitudes that we bring from our cultural experiences reflect practices that are a
familiar part of our heritage. Paying attention to how people use language reveals a great
deal about personal as well as cultural attitudes toward death. By becoming aware of
the metaphors, euphemisms, slang, and other linguistic patterns that people use when
talking about death, we can appreciate more fully the range of attitudes and responses
elicited by encounters with death, dying, and bereavement (DeSpelder & Barrett, 1997).
Take our television reporter. Notice that she used the word Anglo. Considering her
word choice, her name, and her appearance, you might guess that her background is
Hispanic. Her use of the word serious also deserves attention.
Cultural competence depends on the ability to listen and gather information. Con-
sider the reporter’s question. What kind of response might you give to gain a better un-
derstanding of her heritage? It is best to get information before framing a response. Thus,
a useful question is: What has been your experience with Anglo funerals? It is doubtful
that she is talking about a British Anglo-Saxon funeral. More likely, she is asking about
North American Caucasian funerals as contrasted to rituals of her own family or ethnic
group. By matching her language and using the term Anglo in response, she is likely to
give you more specific information.
She describes two recent deaths, one of a Caucasian colleague and the other of a fam-
ily member. The contrasts between the two funeral ceremonies were quite perplexing to
this young woman. The Caucasian funeral was a Protestant service held at a mortuary. The
reporter talked about her experience at the visitation and funeral for her colleague. She ar-
Culture, Socialization, and Death Education 325
rived at the mortuary to find the deceased’s body in a small, empty room. Walking through
the door, she noticed a condolence book set out for her to sign. She did so, briefly viewed
the body, and left. During the funeral, the family sat behind closed curtains, cut off from
the view of the casket and the mourners sitting in the public portion of the funeral chapel.
The funeral for her uncle was held in his parish church (Catholic) in an area of Miami
populated mostly by Cuban immigrants. The funeral itself was preceded by several days
and nights of viewing at a funeral home where family members, including small children,
visited. Cuban music played in the background, and central to the gathering were jokes,
laughter, and stories about the deceased. Laughing and crying together, the family visited
with other members of the community who came to pay their respects.
As she talks about the differences in the funeral rituals, her use of the word serious
is placed in context. Now we have much more information about the cultural differences
that spark her curiosity. As you imagine the contrast between these two gatherings, it
makes sense that, to the reporter, one seemed to be more serious (solemn and staid) than
the other.
Death is a universal human experience, yet, as this example illustrates, our response
to it is shaped by our cultural environment. Understanding attitudes toward death, our
own as well as others, is an essential component of death education (DeSpelder, 1998).
Consider the terms used to describe thanatology, and death education in particular, in
Japan. Thanatology is usually translated as shiseigaku. Shi means death, sei means life,
and gaku means learning or study. Thus, shiseigaku literally means the study of death
and life. Many scholars prefer the word shiseigaku, and this word is often used in books
and articles. Some people translate thanatology as shigaku. That means simply the study
of death. The main death education organization in Japan is called Seitoshi wo Kangaeru
Kai, which translates as the Association for Thinking About Life and Death. Thus, in
this case, life comes first. The Japanese translation of the phrase death education also
has variety. Some translate it as seitoshi no kyoiku, meaning the education of life and
death. The internationally known Dutch expert on Japanese thanatology Alfons Deeken
(1999), uses the words shi eno jyunbi kyouiku, meaning preparatory education for death.
Some use the words, shi no kyoiku, meaning the education of death. Recently, it seems
schoolteachers prefer the words, inochi no kyoiku. This phrase translates to the education
of life. Inochi means life. Inochi no kyoiku includes not only topics about death and
bereavement, but also topics about the birth of life, the preciousness of life, life stages,
and so on. With this usage, the word death, or shi, is omitted from the description of
life and death studies among schoolteachers at the elementary and secondary school
levels (personal communication, K. Takeuchi, Reitaku University, Chiba, January, 2006).
Perhaps this phrasing makes death education more acceptable in the Japanese school
system?
Learning how people in different cultures relate to death in their lives can shed light
on our own attitudes and behaviors. However, there is no formula or recipe that can be
applied to understanding a particular cultural group. While generalizations about beliefs
and practices might be helpful guides, the map is not the territory. Culture does not consist
of rigid principles that dictate behavior (Weaver, 2005). Do not assume that all individuals
of a particular religion, race, or cultural or national group share the same beliefs. Each
person is unique. Norms can be used only as a guide. They are not a substitute for
individual assessment. Operating with a stereotype or generalization in mind can block
an authentic understanding of a particular individual or family’s attitudes, beliefs, and
practices. Relying on stereotypes will trip you up.
When you hear a generalization about a cultural group, ask yourself how this might
help you understand a particular individual or family. Understanding culture requires
knowledge of how an individual defines his or her heritage. The Barrett inferential model
points out that this heritage may be better understood by exploring factors such as
cultural associations, spirituality, and social class (Barrett, 1998, pp. 88-91; DeSpelder
& Barrett, 1997, p. 68). Research on African-American death customs shows that, even
within particular cultural groups, there is tremendous diversity. The African-American
experience, as an example, is more heterogeneous than homogeneous. Thus, skin color is
not the determining factor in matters of death, dying, and bereavement (Barrett, 1995a).
Other factors include geographic location, rural or urban setting, family influences, and
the number of generations from immigration to a particular country.
Consider the power of social class. The celebrations around the dead in Mexico, el
Día de los Muertos, seem more fully embraced by the poor. The Mexican government has
instituted a program in the city of Oaxaca to interest the middle and upper class in the
traditions of their ancestors. As noted in the African-American research, the affluent in
a culture are more likely to move away from their communities of origin, thus becoming
less traditional. The poor are more likely to follow traditional practices.
Different religions and religious affiliations shape spirituality in different ways. The
more conservative the religious experience, the more conservative and traditional will
be the attitudes, beliefs, and values that ultimately affect behavior. More conservative
believers can be characterized as the keepers of the tradition. They hold to old ways of
relating to death, dying, and funeral rites. Some conservative or traditional believers, for
example, object to practices such as autopsies and tissue or organ donation.
In central California and other areas of the United States, where there is a large
Hispanic population, the impact of the number of generations from immigration can
be seen also in the celebration of el Día de los Muertos (Lomnitz, 2005, p. 467). Many
second- and third-generation individuals and families are rediscovering the elements of
the celebration that their parents and grandparents had left in the old country.
The study of dying, death, and bereavement compels us to look at our own
stories, as well as the stories of our neighbors, both locally and globally, with the aim of
comprehending not only the diverse social and cultural influences on our understanding
of death, but also our personal mortality.
People sometimes talk or write about death in the United States, but this phrase
conceals what, in fact, are many different ways of death, reflecting attitudes, beliefs, and
customs of culturally diverse groups. In describing families from the United States, Olson
and DeFrain (2006, p. 32) remind us that “tremendous diversity exists among people
who are commonly grouped together.”
The extent to which people identified as belonging to a specific cultural group maintain
distinctive attitudes and practices varies widely, both between different subcultural or
ethnic groups and among people who share a particular heritage. In a cosmopolitan
world, individuals may find themselves wrestling with the dilemma of seeking to maintain
their cultural distinctiveness while also taking steps to broaden the conventional terms
of what it means to be a member of their culture. When a person’s opinions or views
differ markedly from those commonly held within his or her culture, this divergence can
lead to cultural dissent from majority views. For example, influenced by body disposition
practices in a global context, an individual might opt for cremation instead of burial,
despite the latter being the strongly held preference and conventional practice within
his or her own cultural group. Such choices reflect the fact that today’s societies are
increasingly homogeneous (similar) across cultures and heterogeneous (diverse) within
them (Sunder, 2001, pp. 497-498).
Nevertheless, ethnicity and other cultural factors often have an impact on such
matters as methods of coping with life-threatening illness, the perception of pain, social
support for the dying, behavioral manifestations of grief, mourning styles, and funeral
customs. A comparison of bereavement customs among ethnic and other cultural groups
in the United States shows that, “while adapting partly to Western patterns, these groups
also adhere to the bereavement procedures of their own cultures” (Stroebe & Stroebe,
1993, p. 201; see also Eisenbruch, 1984; Goss & Klass, 2005, pp. 92, 188; Hayslip &
Peveto, 2005; Howarth, 2007, pp. 227, 266; Sanders, 2002).
African-American funerals and mourning practices illustrate how traditional customs
can persist despite the passage of time and changed circumstance. Elements of traditional
West African practices retain their importance for many African-Americans (Barrett,
1995a; Barrett, 1995b). This cultural persistence is evident in customs such as gathering
at the gravesite to bid godspeed to the deceased and referring to funerals as a home-
going ceremony honoring the spirit of the deceased. Roediger (1981, p. 163) says such
customs “grew from deep African roots, gained a paradoxical strength and resilience
from the horrors of mid-passage, and flowered in the slave funeral—a value laden and
unifying social event which the slave community in the United States was able to preserve
from both physical and ideological onslaughts of the master class.”
Similarly, Spanish-speaking people in northern New Mexico continue to practice
traditional forms of recuerdo, or remembrance, which memorialize the dead and comfort
the bereaved. Presented as a written narrative or ballad, the recuerdo tells the story of a
person’s life in an epic, lyrical, and heroic manner. This story telling is a kind of farewell, a
leave taking or la despedida, on behalf of a deceased person. Such memorials frequently
contain reminders of the transitory nature of life and express the notion that life is on
loan from God for only a short time, that we are only shadows. Korte (1995-1996. p.
254) says, “The wisdom of the culture has provided many termini [points on the journey]
where family, friends, and community may take their leave and depart from a deceased
person.” The poignant beauty of the recuerdo, given to the bereaved family and often
published in local newspapers, suggests that life has meaning because there is death.
Another source of meaning making is children’s literature. Many classic children’s
stories and fairy tales depict death, near deaths, or the threat of death (Tatar, 2002).
There are “tales of children abandoned in woods; of daughters poisoned by their mothers’
hands; of sons forced to betray their siblings; of men and women struck down by wolves,
or imprisoned in windowless towers” (Windling, 2001, p. 227). Death has often had a
place in children’s stories, and this fact is especially true of the earliest versions of familiar
stories that parents and other adults share with children. Children in the United States
taught to read with textbooks such as McGuffey’s Eclectic Readers found that death
was presented as tragic, but inevitable, and many of the death-related stories conveyed
a moral lesson (Lamers, 1995). In the 19th century, the violence in children’s stories was
usually graphic and gory so that it would make the desired moral impression (Marvin,
2000). The manner in which death is presented in children’s stories communicates cultural
values. Consider, for example, the contrasts between the European and Chinese versions
of the tale of Little Red Riding Hood.
In the Western version, Little Red Riding Hood goes by herself to visit her grandmother,
encounters the wolf, and is tricked into believing the wolf is her grandmother (Orenstein,
2002). In the traditional version of the story, the wolf eats Little Red Riding Hood, but she
is saved by a woodsman who kills the wolf and slits its stomach, allowing Little Red Riding
Hood to emerge unharmed. In more recent versions, Little Red Riding Hood’s screams
alert the woodsman, who chases the wolf, and then returns to announce that she will be
bothered no more (the killing of the wolf occurs offstage and is not mentioned) (Morel,
1970, pp. 11-13).
The Chinese tale of Lon Po Po (Granny Wolf) comes from an oral tradition thought
to be over 1,000 years old. In this version of the story, three young children are left by
themselves while their mother goes away to visit their grandmother. The wolf, disguised
as Po Po (Grandmother), persuades the children to open the locked door of their house.
When they do, he quickly blows out the light. By making perceptive inquiries, however,
the oldest child cleverly discovers the wolf’s true identity and, with her younger siblings,
escapes to the top of a ginkgo tree. Through trickery, the children convince the wolf to
step into a basket so they can haul him up to enjoy the ginkgo nuts. Joining together, the
children start hauling up the basket. But, just as it nearly reaches the top of the tree, they
let the basket drop to the ground. The story says, “Not only did the wolf bump his head,
but he broke his heart to pieces” (Young, 1989, p. 27). Climbing down to the branches
just above the wolf, the children discover that he is “truly dead.” Unlike the European
version, which has a solitary child facing the threat of the wolf by herself and ultimately
being saved by someone else, the Chinese folk tale emphasizes the value of being part of
a group effort to do away with the wolf.
Although death is fundamentally a biological fact, culturally shaped ideas and

assumptions create its meaning. This cultural influence is borne out in the experiences of
Hindus living in England who encounter cultural imperatives related to their customary
death rituals. In India, where there are few undertakers or funeral directors, funeral
arrangements are usually made by the deceased’s family. Cremation is a public event,
and a principal mourner lights the sacred flame of the funeral pyre. In Britain, the body
is placed inside a coffin and concealed from view inside the cremator, which is operated
by employees of the crematorium. “For the mourners there is neither the smoke to sting
their eyes, nor the fire to singe their hair, nor the smell of burning flesh to bring the
poignant immediacy and reality of the experience to their consciousness” (Laungani,
1996, p. 198). Living in a different cultural environment, some Hindus in England feel
that they are socially constrained to give up a communal and spiritual ceremony and,
in its stead, are left with an anonymous, individualistic, materialistic, and bureaucratic
procedure.
The examples given illustrate the multicultural nature of modern societies and the
resulting challenges to traditional cultural identities. Such challenges apply not only to
members of immigrant populations, but to people generally. Social scientists point out
that diversity of identity is growing along with increasing globalization, such that most
people worldwide now develop a bicultural or hybrid identity that “combines their local
cultural identity with an identity linked to elements of the global culture” (Arnett, 2002, p.
774). The cosmopolitan nature of life is transforming a rigid conventional understanding
of socialization. “Where a child grows up now matters less than in the past in determining
what the child knows and experiences” (Arnett, 2002, p. 782 ; see also Buchholtz, 2002).
People tend to acquire their learning about dying and death on an ad hoc basis; that
is, in a disorganized and impromptu fashion. Formal education about death is offered
through courses, seminars, and the like, but these avenues of socialization are not part
of most people’s experience. Tactical socialization refers to strategies that palliative care
staff or hospice caregivers, for example, use to informally teach people about death and
dying (Mesler, 1995). Such strategies involve an intentional effort to change or expand
an individual’s or family’s perceptions and behaviors relative to some aspect of their social
world.
Just as societies have a natural interest in the way the educational system is organized
to provide services to individuals, they also have an intrinsic interest in such matters of
public policy as procedures for legally defining and making a determination of death,
rules governing organ donation and transplantation, ways of classifying different modes
of death into socially useful categories, the manner in which investigative duties are
carried out by coroners and medical examiners, and the criteria that apply to performing
autopsies—to name just a few aspects of the death system; that is, the elements of a
society that have an impact on how people deal with dying and death (Kastenbaum, 2009,
pp. 77-88; see also Doka, 2003a; Hayslip, 2003, p. 35; Kastenbaum, 1989; Kastenbaum,
1996, p. 113). These various aspects of public policy are sometimes interrelated, mutually
affecting one another and differing between nations. For example, in recent decades,
new legal and administrative procedures for defining death had to be created when
modern medical technologies led to organ transplantation.
Kastenbaum says: “We may think of the death system as the interpersonal,
sociophysical, and symbolic network through which an individual’s relationship to
mortality is mediated by his or her society” (2009, p. 104). According to Kastenbaum,
the components of a death system include people (for example, funeral directors, life
insurance agents, weapons designers, people who operate slaughterhouses, as well
as people who care for the dying), places (for example, cemeteries, funeral homes,
battlefields, war memorials, disaster sites), times (for example, memorial days and religious
commemorations such as Good Friday, anniversaries of important battles, Halloween),
objects (for example, obituaries, tombstones, hearses, the electric chair), and symbols (for
example, black armbands, funeral music, skull and crossbones symbols, language used to
talk about death).
How the death system functions varies among different societies and at different
times in the same society. The functions of a death system include:
1. Warnings and predictions about potentially life-threatening events (for example,
storms, tornadoes, and other disasters, as well as advice to specific individuals, such
as doctors’ reports of laboratory results or mechanics’ warnings about faulty brakes)
2. Preventing death (for example, emergency and acute medical care, public health
initiatives, antismoking campaigns)
3. Care of the dying (for example, hospice, home health aides, trauma workers,
family caregivers)
4. Disposing of the dead (for example, funerals and memorial services, cemetery
plots, memorialization processes, identification of bodies in disasters)
5. Social consolidation after death (for example, coping with grief, maintaining
community bonds, settling estates)
6. Making sense of death (for example, religious or scientific explanations, support
groups, poetry and consolation literature, last words)
7. Killing (for example, capital punishment, war, hunting, raising and marketing of
animals)
In practice, there are many interconnections and mutual influences among these
functions. It is clear from this brief listing, however, that the elements composing the
death system touch on virtually every aspect of social and individual life. As you study
the various topics related to dying and death, you may find it worthwhile to keep in
mind how they fit into the death system. As Kastenbaum says, “Everything that makes
a collection of individuals into a society and keeps that society going has implications for
our relationship with death” (Kastenbaum, 2009, p. 104).
The concept of the death system is a helpful model for contemplating how death
shapes the social order and, in turn, our individual lives. Technology, in the form of the
digital online universe, has had a significant impact on the death systems of societies
worldwide, as people create Web-based memorial sites, blog about grief, stream funerals
online, offer support to the bereaved, and launch novel initiatives with respect to death
education (Sofka, Cupit, & Gilbert, 2012). As a network of people, places, and times
as well as objects and symbols, the death system affects our collective and personal
relationships to mortality in many ways. Thus, again, we see that culture is influential in
shaping attitudes and practices with respect to the range of elements that relate to dying,
death, and bereavement.
Diversity in death attitudes, customs, and death systems can benefit society as a
whole by making available a broader range of resources for coping with death. Yet it also
presents challenges in pluralistic societies. When everyone in a society shares essentially
the same attitudes, beliefs, and customs, there are known and socially accepted ways
of dealing with death and grief. Cultural diversity may jeopardize this comforting
situation because there is less agreement among the members of a society about which
practices are socially sanctioned for managing death and minimizing existential dread
(Mellor, 1993, pp. 12-13, 18-19; see also Littlewood, 1993; Mellor & Schilling, 1993).
Uncertainty about the social norms for dealing with death is apparent, for example, when
individuals at funerals are anxious about how they should act or what they should say
to the bereaved. In today’s cosmopolitan societies, people find themselves in situations
where socially sanctioned rites for dealing with dying and death are in flux.
Remember our reporter and her question about Anglo funerals?
Becoming culturally competent, can give greater understanding of and connection to
people whose customs are unfamiliar to us. Instead of making a judgment that a funeral
is “serious” as our TV reporter did, we might understand that socialization, culture, and
death systems produce different actions and reactions to dying, death, and bereavement.
Becoming culturally competent allows each of us to better understand our own lives and
to better serve diverse populations.
333
Chapter 35
Religion, Spirituality, and Death Education

Robert G. Stevenson
Every person and society holds certain things to be of value. Death, both in its nature
and its rituals, has long been an area where there are clear personal and societal values.
However, there is a lack of agreement on many of these values. There seems to be a need
for a dialogue that can foster both awareness of these values and greater understanding
of differing points of view.
There is a relative new discipline that examines the origins of such values. It is known
as consciousness studies. This discipline is based on the premise that the meaning given
to an object comes from subjectivity. That is, the meaning we give to a thing comes from
internal thoughts and it is each person’s internal reality that enables the person to decide if
a thing matters and, if it does, to what degree it matters (Black, 2011). To understand this
internal reality in each person requires input from both science and religion since, after all,
values come from each source sometimes what each source says about particular values
can be quite different. Taking this idea into schools, which are being asked increasingly to
teach values can be quite a challenge. However, the school may well be an appropriate
place for providing information that can allow such a dialogue to begin. Part of such
values education would be education about death. Nowhere is examining the role of
values more important than in teaching about death. This curriculum would include the
way death as a concept is viewed in a society as well as an examination of the rituals and
beliefs and the role they play in trying to understand what death means to each of us. In
schools, parts of this examination can take place in history class, or in biology class, or in
a type of course referred to simply as death education.
This chapter examines the connections among death, religion, and spirituality and
suggests a need to include all three—death and spirituality and religion—in an education
program. The vehicle for such inclusion would be death education. Death education has
been defined as “instruction that deals with death, dying, grief and loss and their impact
on the individual and on humankind” (Stevenson, 1984). It has also been defined as:
education about death that focuses on the human and emotional aspects of
death. Though it may include teaching on the biological aspects of death,
teaching about coping with grief is a primary focus (Wikipedia, 2011).
Such instruction can be formal, through texts, courses, conferences, workshops
and/or lectures/sermons. It can also be informal, through life experience, observation or
something as simple as a parent’s use of a teachable moment. Formal death education
may contain components dealing with religion and spiritual beliefs as they relate to death,
to life after death, and/or to the grief process. Instruction may also include lessons on
scientific findings and the way in which they can cause one to view death. These units
and their effects can be studied and evaluated.
In contrast, informal death education can vary widely from incident to incident.
It can occur during or after any loss. By its nature, this informal death education may
include religious beliefs, rituals, statements, or spiritual exercises. It may even consist of
watching scenes in a cartoon, a movie, or on the evening news. Religious or spiritual
beliefs and traditions are often used at such moments in an attempt to soften the blow of
a loss. However, it is also possible that in individual informal situations, for some people,
none of these things will be present and they must try to deal with the event and any
accompanying feelings alone.
Death education takes place on many levels and in many contexts. It can be found
in secondary schools, undergraduate and graduate college curricula, professional
development programs, as well as in religious teachings. It may even be needed at the
elementary school level.
Children are exposed to death at home, at school, and in the media. It has been
estimated that approximately 4-7 percent of children experience the death of a
parent by the time they are sixteen years old. Others will experience the death
of a sibling, a grandparent, or other family member. The death of a loved one
affects not only the child, but also has a ripple effect on the rest of the children
in the classroom. Alternately, the class as a whole may experience the death of
a member of the school community (e.g., teachers or staff) or the death of an
individual in the media (e.g., Michael Jackson). In other cases, children may be
exposed to the media reports of a national or global tragedy (e.g., the earthquake
in Haiti). Children who experience death will have a range of reactions in a
variety of settings, including school, where they spend much of their time. Thus,
schools are a critical setting for children who are dealing with death and loss.
Talking to children about death is a common problem faced by educators who
are confronted with children’s questions. It is a challenging subject and one that
is often ignored and avoided (Talwar, 2011).
Talwar stated that (1) schools are a critical setting for children who are dealing with
death and loss and (2) that some educators encounter problems when speaking with
children about death.
Religion, Spirituality, and Death Education 335
Farther along the education graduate spectrum, studies of graduate students find
they have needs in this area that are still unmet. Even those who are preparing to enter
the schools as counselors seem to benefit from taking courses that cover such material.
One study found that graduate students studying in the field of counseling benefitted
from a death education course in three areas: (1) a greater openness in discussing death
and death-related issues, (2) an increased understanding of death, and (3) a reduced
personal fear of death (Harrawood et al., 2011).
Despite the certainty of Talwar and others and the findings of Harrawood et al.,
when the students are adolescents, or younger children, the place of death education is
still a cause of active debate. It is sometimes assumed that, when the students are adults,
there would be less difficulty merging the topics of science, religion, and spirituality with
death education because these students are able to choose whether they wish to pursue
this avenue of investigation and are operating at a higher intellectual level. However,
even for adults the topic can be sensitive. In one New Jersey college, the chair of the
sociology department refused to allow any text to be used that spoke of religion when
discussing death and the grief reaction of a community or an individual to a death.
In formal death education courses, the connection shared by death education, religion,
and spirituality can appear obvious because the common areas of interest are numerous.
However, recognizing this connection is not always the case. When teaching a course
on death, grief, and loss to sociology and psychology majors and student nurses at the
college referred to above, one instructor was denied permission to select for the students
any text on death and/or grief that referred to religion, even indirectly. His supervisor
stated that the study of religion and spirituality had no place in an objective examination
of death, loss, or grief. He believed that religion and science were two separate and
distinct fields and that neither field was needed to understand the other. For that reason,
the supervisor rejected two texts that were being used in many death education classes at
that time. Each of the texts had a chapter that mentioned religion (Vernon, 1970; Bender,
1974). Students often brought up issues linked to religion, but found no references within
the approved course texts. The course was intentionally limited in its ability to address
the needs of the whole person. It is now possible for a defense of such inclusion to be
made using consciousness studies, formalized in the 1980s, as a basis for that part of the
curriculum (Black, 2011).
How can the needs of the whole person in relation to death, loss, and grief be addressed
if religion and spirituality are excluded even though people have spiritual needs? Hospital
chaplain Carole Smith-Torres (1985) examined this question when she addressed Spiritual
Care of Patients at a Columbia-Presbyterian Symposium in New York City. She spoke of
the need to work with the whole person. She expressed agreement with the earlier work
of Fish and Shelly (1978) who said that, “Man is a physical, psychosocial, and spiritually
integrated being, created to live in harmony with God, himself and others” (p. 33). If
people are meant to life this way, issues related to the end of life impact each of these
aspects of humanity as well. One need not personally hold such beliefs to understand
that there are many people who do. It is possible to see that there will be many students
who will be unable to fully grasp the meaning of death, dying, and grief if the issues
related to religion and spirituality are never addressed.
Mwalimu Imara (1980), a hospital chaplain, worked with Elisabeth Kübler-Ross in
Chicago, during the time when she was engaged in developing her five-stage model of
dying. In a 1980 interview concerning death education, he described a concept known as
authentic religion. His research found that belief in a particular religion did not, by itself,
necessarily influence the way in which a person dealt with death or with grief. He stated
that it was authentic religion that described what it takes to be a “real” person. Imara
defined authentic religion as one that provides answers to the following three questions:
1. Who are you? This question is answered by relationships, not through a single
title or job description. Authentic religion helps the individual form his or her
self-identity.
2. What are your priorities in life? Every religion requires its members to set and
follow priorities. Those who believe in authentic religion take their life priorities
from that faith.
3. What is it that makes sense out of life/death? To be a whole person one must
make choices and be willing to face the consequences of those choices.
Imara’s work led him to conclude that authentic religion, because it helped the person
to answer important life questions, was a key to coping with death, loss, and grief.
Spirituality has been defined as the name given to issues related to the nonmaterial
aspects of life (Morgan, 1993). It involves a quest for answers to the questions posed by
life and by death. If that is the case, then Imara’s concept of authentic religion describes
a quest that is part of spirituality. People who are able to use religion to answer the three
questions identified by Imara (1980) were said to have authentic religion. People with this
authentic religion have found a way to answer the questions that life and death pose to
everyone. As a group, they had less anxiety about, and less fear of, death. These people
were better able to cope with loss and to move through the grief process to recovery. If
religion can offer such a seemingly effective way of coping with death and grief, how
does one justify omitting it from any curriculum that addresses those topics?
Before examining the relationship that exists between religion/spirituality and death
education, it is important to remember the many forms of death education and the
variety of contexts in which education about death occurs. One now must also look at
loss education. Formal death education courses, having become broader to cover more
of the types of loss and grief that impact students, have evolved and are now a part of
some guidance seminars that deal with loss and grief. What had once been referred to as
death education is now subsumed into learning about loss and developing ways to cope
with its effects. If death will one day touch every life, so too does loss, of which a death
is but one example. Loss education may well be the name that will eventually be given to
curriculum that was once called death education.
To discuss the connections of death education, religion, and spirituality, it is necessary

to start with an operational definition of each. In this reading, religion is defined as
codified belief in the transcendent in an integrated system that is oriented toward helping
people find meaning and purpose in life (Gladding, 2011). Spirituality is defined as a
unique, personally meaningful experience of a transcendent dimension that is associated
with wholeness and wellness (Gladding, 2011). The chief difference between the two
terms is that religion is defined as a set of beliefs, and related practices, which can provide
meaning, while spirituality is defined as an ongoing quest to find meaning. The two
concepts are not precisely the same but they are interwoven. In simple terms, one can
say that religion is external, while spirituality is internal (Gamino, et al., 2003). Religion
addresses the group while spirituality is individual. Gilbert (2002a) says, “The function of
religion is to build the person spiritually” (p. xiv). Now science is added to this mix. Like
religion, science provides a set of beliefs and is external. Some see the relations of science
and religion as adversarial with religion—in the area of evolution, for example. However,
others say that the two can work with each other and that it need not be an either/or
choice of which set of beliefs will be presented.
Religious orientation does go beyond science in that it can be described as either
intrinsic or extrinsic. Those people with an intrinsic orientation tend to see religion as an
end in itself, while those with an external religious orientation use religion as a means to
an end (Allport & Ross, 1967). Either orientation can influence the behavior and feelings
of those facing death or the coping of survivors after a death. This insight would appear
to make religious orientation an integral part of any examination of attitudes toward
death.
Religion and spirituality can influence the content and organization of death education
courses, programs, and workshops. Science is already there when one asks What happens
when someone dies? or What causes a death? In terms of content, religious beliefs and
practices are often included in:
• definition of the moment of death
• views of the afterlife
• funeral rituals
• the role of ritual
• the grief process
• ethical issues (such as euthanasia, suicide, or abortion)
Religion has been one of the means used to examine these topics. It has also
provided some people with answers to the questions that the study of these topics can
raise (Stevenson, 1993). Sigmund Freud linked death and religion by claiming that, for
early man, death was “natural, undeniable and unavoidable” (1915/1959) and that the
basis of religion is an attempt by man to lessen his terror of death (Hardt, 1979).
Young people have at least as many questions as adults about these issues. Religion
has provided many with answers to these questions, but how might the different
teachings of different religions and the values they hold be included in a death education
or loss education course? How can educators avoid offending the beliefs of some while
describing the beliefs of others?
Religion in a Pluralistic Society
Religious institutions have always provided a type of death education, even if it was not,
as yet, labeled such. Diversity of religious belief, or the lack of such belief, in our pluralistic
society makes it difficult to generalize about the impact of religion in the education of
young people about death. Christians may view death as a transition to eternal reward.
They may also see it as punishment for sin. Some Christians have attributed their feelings
of guilt to a traditional religious portrayal of death. On the other hand, their faith can also
offer comfort in times of grief. Jesus said, “Blessed are those who mourn for they shall
be comforted” (Matthew 5:4). The comfort is said to come through the belief that Jesus
is the resurrection and the life and that one who believes in him “will live, even when he
dies” (John 11:25). The reaction to any of these individual statements can vary among
individuals—becoming a source of comfort, suffering, or a combination of both.
Science defines death as “the permanent cessation of all life functions” (Miriam
Webster, 2011). However, Eastern religion speaks of death as a transition in which the life
force moves on to a new plane of existence or another life in this world. Eastern faiths, such
as Hinduism, Buddhism, or Taoism do not speak of personal salvation. There is common
ground with Western faiths, however, in religious teachings about death. In general, religious
belief offers explanation for events that may otherwise seem incomprehensible, such as,
Why did he have to die? Science might answer that the reason was because something
made the body unable to live (illness, accident, advanced age). Religion offers belief that
can help calm fears regarding the fate of the deceased (heaven, reunion with Brahma,
movement to a new physical form through reincarnation) and through ritual (wakes, shiva,
cremation, graveside services) and can be a source of communal strength. In addition, when
one feels hopeless, religion can be a source of hope...hope that the deceased in now beyond
this “vale of tears” and that those who mourn may one day be reunited with their loved
one. Religion generally offers the belief that life continues in some form after the event of
physical death and may help the bereaved to move on with their lives.
The roles of family and religion must both be taken into account when working
with bereaved individuals. When death education is offered in schools, it is not done in
isolation. Teachers must try to be conscious of the many influences in the lives of their
students. Cultural, regional, and religious differences must all be acknowledged if death
education is to be truly responsive to the needs of students (Stevenson, 1993).
In a secular environment, even in American secondary schools where it is required to
preserve the separation between church and state, there is clearly a difference between
teaching religion and teaching about religion. There are numerous courses that traditionally
teach about religion. Social studies include information about deities of the ancient world
(Egypt, Greece, and Rome), the beliefs of the Hebrews, the rise of Christianity in the
Roman Empire, the teachings of Mohammed and the rise of Islam, the Renaissance, the
Reformation, and the beliefs of Europeans who emigrated to the New World seeking
religious freedom. World cultures classes describe the teachings of Hinduism, Buddhism,
and Islam in order to understand their role in the cultures they have helped to create and
to shape. In humanities classes, the Bible, the Torah, the Quran, and other religious texts
are studied as keys to understanding human values and beliefs (Stevenson, 1993).
Death education courses in schools present religious information related to death and
grief in much the same way. Zalaznik (1979) created a curriculum that used student writings,
guest speakers, and/or group discussion to cover the beliefs of a variety of religions. An
earlier high school curriculum, started in 1972, used religious sources, along with secular
sources, to address student questions in units entitled Death and Beyond, Death and Ritual,
and Why Do People Die? (Stevenson, 1972). The inclusion of religion in these courses is
consistent with the use that young people have made of religion since long before death
education courses existed. It has been shown that students use religion to:
• provide a framework to discuss death (Mills et al., 1976)
• confront and cope with the fear of death (Hardt, 1979; McHugh, 1980)
• answer questions about death and what happens “after we die” (Grollman,
1967; Mills, 1976; Stevenson, 1993)
• understand the religious origins and role of many death-related rituals (Grollman,
1967; Vernon, 1970)
These uses of religion are not relegated to young people alone. One study of
the elderly in rural communities showed that they used religion to “render the world
intelligible”(Tellis-Nayak, 1982). If these uses of religion to understand death-related
issues continue throughout the life span, surely religion should be included in any course
attempting to discuss the topics in which religion plays such an important role.
Treatment of Controversial Issues
Even if religion is used by individuals to help them understand the world in which they
live and cope with the crises they face in that world, the inclusion of religion in death
education is still seen by many as controversial. It should be noted that death education
itself is still seen by many as controversial. In an amazing piece of writing, combining
partially correct information (selectively chosen) and personal opinion, Blumenfeld stated
that death education was being used “in virtually every public school in America for at
least the last fifteen years” (1999, p. 1). That is simply not true, unless one defines death
education as never mentioning the word death. The reason for such gross overstatement
is to raise concern in parents, and it can create a split between parents and educators.
Blumenfeld particularly attacked the inclusion in death education of the topic of
reincarnation—implying that such teaching was the reason for the killings at Columbine
High School.
Blumenfeld’s article first appeared on the Internet in 1999. It is still, in the second
decade of the 21st century, being circulated as if it were written only yesterday. The
Internet gives such articles a life of their own, with little or no way for an individual to
check their validity or how current the information may be.
There is yet another reason why teaching about religion and spirituality belong in
a curriculum that deals with death and other losses. It has been pointed out that the
modern denial of death may be a result of the decline in the belief in personal immortality
(Kovacs, 1982). It has also been stated that religious belief in an afterlife can provide
support to the bereaved and that the secularization and deritualization of grief deprives
individuals of the solace such rituals may provide (Brennan, 1983). Denial of death has
been shown to be ineffective for adolescents in dealing with death-related issues and/
or the grief process (Stevenson, 1984). In attempting to prolong their use of denial in
dealing with death and bereavement, some adolescents engage in risk-taking behavior
to prove to themselves the validity of their belief in their own personal immortality. It
is this sort of affirmation of personal belief that is taking the place of traditional belief
concerning an afterlife. Both Hostler (1978) and Yalom (1980) attribute increased risk-
taking behavior to adolescent attempts to preserve the coping mechanism of denial. The
belief that adolescents should “learn to deal with bereavement and grief on their own”
(p. 284) when developing coping skills is not borne out by the facts and may be itself
a contributing factor to the increase in potentially self-destructive adolescent behavior
(Stevenson, 1993).
Religion and Spirituality as Controversial Issues
If educators are to avoid negative pressure being brought to bear on their courses when
religion or spirituality are discussed, it may be helpful to have a procedure in place in
advance for dealing with these issues as controversial issues. There are a variety of policies
and practices in schools for dealing with controversial issues when one looks beyond the
United States and Canada to other countries and cultures. However, it seems that in
the United States there has been the greatest need for a policy that allows controversial
issues, such as religion or spirituality, to be included in death education. One school
district’s approach will be used as an illustration of what can be done.
There is an existing policy that has been in place for over 40 years in one school
district in New Jersey. It is a policy that can be used to fit this situation. This policy,
approved by the River Dell Regional Board of Education, defines a controversial issue as
a question in which,
…one or more proposed answers…arouse strong reaction in a section of the
citizenry…The immediate cause of this reaction may be personal belief or
interest, or allegiance to an interested group. The most critically controversial
questions are those characterized by current importance and by group opinions
and interest (River Dell, 1970, p. 4).
Religion and spirituality each fits this definition. Personal beliefs will be addressed if
religion and spirituality are addressed. Interested groups can include all organized faiths,
as well as persons who do not believe in a higher power, or those who do not want any
mention of religion in public schools. In a time of increasing diversity it also allows for
inclusion of Asian religions and philosophies, such as Hinduism, Buddhism, Shinto, and
others.
The decision whether a particular question should be a matter for school study is made
by the board of education, through approval of the course of study. When a potentially
controversial issue arises unexpectedly, the educator is guided by five key questions.
1. Is this a question of timeless importance? Questions related to death, suffering,
life after death, and the quality of life have been asked by people since the
beginning of recorded history. Religion and spirituality have played a key role in
providing answers to these questions.
2. Are the students mature enough to deal with this question? With religion and
spirituality, as with any other topic in education, it is important that the topic be
addressed in a way that is age-appropriate.
3. Do answers to this question help meet student needs? A balanced presentation
of religious values and teachings that can have an impact on the lives of students
can be beneficial to the students involved.
4. Is consideration of this question compatible with the purposes of the school?
Public schools in the United States are charged with educating the whole child.
With the importance of religious and spiritual belief in the developing lives of
children (as described most significantly by C.G. Jung and by other contemporary
researchers), it would be difficult to meet this charge if the major role of religion
and spirituality in the life of each child were to be ignored.
5. Is the teacher prepared for the responsibility of dealing with this question? The
question of “adequate” preparation is a tricky one. Rather than state specific
characteristics of such preparation, the policy states the following, “The wise
teacher avoids going into a controversial topic which is beyond his or her own
depth (of understanding). A student would be better uninformed about a ques-
tion than misinformed about it” (Stevenson, 1993, p. 286).
The following list of suggestions can serve as a basis for procedures to apply with
courses that include religion in a death education curriculum. It is based on a similar list
of points related to teaching about religion in public schools developed by the Public
Education Religious Studies Center (PERSC) of Wright State University, Dayton, Ohio,
(Smith, 1981). In any procedure for including religion and spirituality in death education
courses/programs in secular institutions, it is suggested that in the United States:
• A public institution may sponsor the study of religion, but not the practice of
religion.
• A school may expose students to all religious views, but may not impose any
particular view.
• The approach to religion is one of instruction, not one of indoctrination.
• The function of instruction is to educate about religions, not to proselytize any
one religion.
• The approach of death education to religion is academic, not devotional.

• Death education courses/programs in a secular context should study what
people do believe. These courses/programs should not teach students what
people should believe.
• Death education courses/programs should strive to increase student awareness
of the beliefs and the role(s) of religion, but should not press for acceptance of
any one religion, or even religion is general.
• Death education courses/programs seek to inform students about a variety of
beliefs, but should not seek to conform to any one belief (Smith, 1981, p. 65).
Policies and procedures, such as those cited above, may assist death educators to avoid
unnecessary controversy if they decide to include religion and spirituality in a curriculum.
To not include religion or spirituality because these are potentially controversial issues
implies that these topics are either not important, or that they are important, but schools
and educators are unable to discuss them in an objective manner. As a consequence,
students may believe that:
• such topics are not important enough to be considered by students, or
• such topics are too difficult for educators and schools and are therefore beyond
the ability of students to comprehend.
The existence of a policy on the treatment of controversial issues, by itself, shows
there are educators and boards of education that believe some questions lack one correct
answer and that these questions are of such importance that they still deserve to be
addressed throughout society, including schools.
Death Education in Religious Schools
One might think that curricula dealing with death, loss, and grief would already be in
every religious school. The worry that a discussion of religion, or religious values, in public
school may undermine the influence of religious advisers need not be an issue in this
environment. In most religious schools, there would be a clear central focus—the core
beliefs of the religion that supports the school—and students would not necessarily have
to confront beliefs contrary to their own. However, there can be concerns here as well.
In one parochial high school, for over a year after a teenage student had died by suicide,
the faculty members were prohibited from speaking about the death with any students.
They were not to even use the word suicide in the presence of students. The principal, a
psychologist herself, believed that this discussion would increase the likelihood of other
suicides. What resulted was emotional chaos as everyone tried to cope with the death,
and with the suicide that caused it, without the ability to actually speak about it directly. It
was only when an outside speaker was brought in to address the faculty on a professional
development day that the silence was finally broken.
In a nearby community a parochial elementary school father had a psychological
breakdown. He killed his children and his wife with a knife. He then stabbed himself
multiple times. The principal visited every class and spoke about the deaths of their
friends and classmates. However, she then cautioned the students not to speak about
this to “the little ones.” The principal then went to grades 1 through 3 and told those
students that the family had moved away. This principal’s approach created a situation
where children in the same family could not speak to each other. Some of the children
asked their parents, Why did Sister lie?
Each of these cases could be viewed as an exception that had no connection to death
education. However, the point is that we cannot assume that all religious schools address
issues related to death and grief. In these schools there is a place for prayer. The faith
of these students allows prayer to be used as a way of coping with a loss and in most
religious schools the underlying theology of the sponsoring religion allows comments,
such as, They have gone to be with God, to be made in all sincerity. Yet, some of these
schools believe that death education had no place.
The main point here is that in religious schools, as in any other institution, death
education needs to be offered in an age-appropriate, planned manner. The presence
of religious faith, by itself, does not guarantee that the topic will be dealt with in a
professional and caring way.
Death Education in Clergy Education
It was stated above that, it might be assumed that, when the students are adults there
would be less difficulty merging the topics of religion and spirituality with death education
because these students are able to choose whether they wish to pursue this avenue of
investigation. Religion offers many definitions for, and explanations of, death. It has been
identified in ways that range from death as the wages of sin to death as the ultimate
step in reunion with God. These broad differences in meaning must be understood by
clergy if they are to be able to assist their followers in ways that take personal spirituality
and religious differences into account. An issue for clergy, especially those serving as
chaplains in a medical or military setting, is the ability to help individuals deal with the
need to cope on some level with the problems posed by loss and by suffering. When
the death education is offered in the context of a particular faith system, there is not as
great a concern about offending the beliefs of others as might exist in a secular context.
Pastoral counseling typically includes discussion of helping others to deal with loss and/
or suffering, and death education is a part of such preparation.
While pastoral counseling in general may be more attuned to psychological responses
to loss and suffering than was the case some years ago, there are clergy/spiritual advisers
who receive a broader preparation that acknowledges differences in belief and tries to
prepare the clergy to assist individuals whose religious practices or spiritual beliefs they
may not share. That group consists of military and hospital chaplains. For chaplains, the
possibility of death and the reality of suffering and grief are constantly present. These
possibilities affect the individuals whom they are trying to assist. These affected individuals
hold a wide variety of beliefs that may come from different religious traditions. They may
also have very different ways of relating to the spiritual dimension in their lives. In this
context death education takes a different approach.
In a study of practicing chaplains, Sakurai (2006) examined the themes the chaplains
themselves found to be important in their pastoral roles. The responses showed that 84%
saw “attending to suffering” as the major theme in their work. They then saw inviting the
individual to share his or her story or dialogue as the next most important theme (59%).
Any professional death education programs aimed at assisting chaplains, with the very
diverse beliefs of this client base, would do well to share personal stories as a starting
point.
Reverend Richard Gilbert, a director of Chaplaincy Services, has studied the role of
spirituality in helping individuals to face illness and loss. He offers the following common
threads that chaplains can use to carry on in the face of suffering and grief. His points
seem to parallel the questions identified earlier by Imara (1980) (and listed previously).
Gilbert sees these common threads as:
• the person’s understanding of God/his or her beliefs (creed)
• the person’s sense of the transcendent in his or her life
• the role of the religious leader/spiritual adviser
• the symbols identified as important by the individual
• how this set of beliefs/practices engages the individual
• the way(s) in which this religion/set of beliefs helps the individual to determine
the meaning of life, suffering, and death
• the ritual(s) that may be beneficial to individuals coping with personal loss and
suffering (Gilbert, 2002a)
These common threads shared by most religions should also be a component of any
professional death or loss education program for clergy. Chaplain education programs
have already begun to broaden their approach with greater numbers of Muslim chaplains
training for service. In 1999, Georgetown University, a Jesuit Roman Catholic institution,
named Imam Yahya Hendi as the first Muslim college chaplain in the United States
(Petersen, 2011). In 2011 he is trying to help that institution solve the lawsuit that
has resulted from values in conflict. Georgetown is being sued to remove all religious
symbols from its buildings since they offend the values and beliefs of Muslims. Fuad
Rana was a student on the search committee that brought Hendi to campus. He said the
university was terrific in its recognition and response to the growing needs of the Muslim
community, and Hendi’s presence was invaluable in that response. “Having an imam is
a great resource in terms of providing a link between students and campus ministry, and
offering support and developing programs that students couldn’t do otherwise,” Rana
says. “I’m sure there are students on campus today who could not imagine what it was
like without an imam on campus” (Petersen, 2011, p. 1). Now, because the university
has been unable to reconcile different values and cultural beliefs, Hendi is in the center
of a legal case that will may have far-reaching consequences. If actions are taken without
looking at underlying values, this can be the result.
Some of the points mentioned above may also be included in death and loss education
programs in the schools where, too often, the spiritual dimension is omitted. When such
omission happens, the rituals and coping styles of grieving individuals can become more
difficult for young people to comprehend (Cox, Bendiksen, & Stevenson, 2002; Gilbert,
2002b; Gilbert, 2006). The Georgetown situation shows that a failure to examine such
values can lead to problems for adults and for the institutions as well.
Religious Values and Society
Traditionally, religion has fulfilled several functions in society. It has been a kind of social
glue that provided people with a common set of values and beliefs that helped to develop a
sense of community. It can give people a sense that life and death have some larger mean-
ing or purpose. Religion reinforces most of the norms of a society. In addition, religion can
provide help during major life events or periods of change by assisting people to face, and
to deal with, these events and the stress that accompanies them (Robertson, 1977).
Religious values can provide a sense of belonging to those who share those values.
They have provided some with a feeling of security when one is confronted with the
reality of personal mortality or the death of loved ones. Finally, religious values have been
shown to give to some a sense that life has meaning…even a life of suffering. This last
function of religious values in society is of increasing interest to educators and parents
at a time when schools are being asked to take a more active role in stemming a rising
tide of adolescent suicide. Schools are being asked to take on values education to place
greater emphasis on life and its relationships. Death education can assist in meeting this
challenge.
A simple goal of all education is, or should be, to have students accept as fact the
belief that each of us is responsible for the consequences of his or her actions (Stevenson,
1983). A decision about an act being right/wrong or good/evil is essentially a value
judgment. Gordon and Klass (1979) saw such value judgments as one of the major goals
of death education. They saw this death education goal as “defining value judgments
raised by issues related to death.” They cautioned that educators would need to be aware
of their own values and personal beliefs and to understand the complexity of the issues
involved to be able to present all sides in a clear, straightforward manner (Gordon & Klass,
1979). Even if we were to decide that religion, religious values, and spirituality had no
place in death education, how can anyone be sure of the personal values (religious and
otherwise) that educators may be using to create and implement lesson plans? If we first
set guidelines for discussion of values, including religious values and discussion of religion
as these apply to death education, there is a greater chance to approach such values in a
conscious manner.
A conscious understanding of our values and those of others can give us a greater
feeling of control over our lives. Such an understanding, to be complete, must include
religious values and the spiritual questions asked about the meaning of life and death.
In some cases, discussion of values is said to be limited to humanistic values. However,
since humanism is seen by some as becoming more and more like a religion in its own
right, adopting humanistic values may not solve the situation. It may merely add a new
dimension to it.
Summary
Death is a topic about which individuals and societies hold strong values. One vehicle to
facilitate communication about these different ideas and values is formal death education.
Death education, defined earlier as “instruction that deals with death, dying, grief and loss
and their impact on the individual and on humankind,” exists to provide individuals with
information. Those who take such courses/programs typically want such information to
(1) better understand themselves and others and (2) to make informed decisions related
to issues in their lives, including loss and grief. Religion and spirituality, as well as the lack
of any formal religious belief, play a role in the lives of most people. Since no decision can
be better than the information upon which that decision is based, it is necessary to include
all relevant areas in any course/program that seeks to educate students about death, loss,
and/or grief and their impact on a person’s life. To try to have a meaningful curriculum
about death and grief without examining the role played by religion/spirituality means
that such a curriculum is consciously omitting a body of important information on this
topic. Anthropological interpretations of religion have generally held that the supportive
effects of religion and spirituality on a culture outweigh disruptive consequences (Barra,
et al., 1983). The possible pitfalls in adding religion and spirituality to death education
can be addressed in advance of their inclusion in a curriculum. By creating appropriate
policies and procedures for the inclusion of this important information, death education
students will be better equipped to examine death, loss, and grief in the context of their
impact on the whole person.
347
Chapter 36

on Death Education
Illene Noppe Cupit
It could be easily said that death education began as soon as human beings realized
the boundaries of their own life spans. Death education, or the formal and informal
study of issues pertaining to dying, death, grief, and loss, has been a significant part
of folklore, oral traditions, rituals, literature, art, and, of course, religion, throughout
history. How death was understood paralleled the historical and social institutions of a
particular culture anchored into a specific time. Greek mythology, the changing nature of
the understanding of the universe in relation to humanity’s place within, the black plague
of Europe in the 14th century, a Western shift emphasizing individualism over communal
thinking, world wars, and changes in life expectancy may serve as organizing frameworks
for understanding how both life and death was known (Cruz, 2010). And these factors
give perspective and meaning to why contemporary death education is so important to
a global citizenry.
Generally speaking, prior to the 20th century individuals learned early on in life that
people died. They also learned what behaviors and ideas were expected in the face of
death and derived a concept of the afterlife from religious teachings and secular responses.
Death was acknowledged as a fact of life, and a scant few were shielded from it for very
long. In fact, during the latter part of the 19th century, childrens’ mourning kits containing
the accoutrements of funeral and ritual (e.g., black armbands) could be purchased to
teach young girls how to properly execute the behaviors associated with death rituals
(Stearns, 2010). What a perfect blend of American capitalism and death education!
The history of death education has been viewed primarily through a Western/
European lens. According to Stearns (2010), knowing the history of thanatology is
important because how death was and is currently known has gone through a number of
profound changes that we, as a society, have yet to completely understand. This complex
evolution in thinking may especially be the case with regard to the cultural revolution
heralded by the information age.
The social historian Philippe Aries (1981) described how Western concepts of death
approximated sociohistorical events. Thus, the cultural view of death prior to the Middle
Ages was shaped by the attitudes of knights and monks, into a “tamed death.” This
notion was simple death, orchestrated by the dying person him- or herself, publicly
acknowledged and ritualized as a known aspect of life on this earth. Death was viewed
not as much about personal loss, but more as a part of the natural order of things.
Death education during this period most likely took the form of learning via observation
the appropriate rituals and behaviors accompanying the deathbed scenario. This form of
death changed during the Middle Ages, when self-awareness and religion’s emphasis on a
judgment day led to a focus on death of the self. Death education, in the form of religious
teachings, reflected the emphasis on living life in preparation of the afterlife and eternal
salvation. The concept of dying well (known as Ars moriendi) was heralded during this
time in Christian-based handbooks outlining deathbed rituals. Another change in death
attitudes occurred during the 18th century. In tandem with the Industrial Revolution
and trends toward social secularism, romantism, and spiritualism, the mourning and
memorialization of the death of significant others became central to the concept of death.
Proper mourning behavior, typically different for males and females, was an important
aspect of learning about death and dying. Whereas Aries (1981) concedes that these
past themes reflect an acceptance of death, he notes that significant demographic trends
and historical events in the 20th century changed how people related to death. People
lived longer, became increasingly mobile, and were more easily distanced from immediate
contact with death. Death, dubbed by Aries (1981) as “denied and forbidden,” became
wrapped in a conspiracy of silence, at least in Western society (Aries, 1981). Perhaps
the most significant death education lesson learned was that this subject was neither to
be acknowledged nor studied. Although Freud wrote of death and grief in Mourning
and Melancholia (1917/1959), death as a topic of teaching and learning was largely
nonexistent. Too culturally toxic for conversation, death was not formally discussed until
individuals were directly confronted with the death of their loved ones or the impending
death of themselves. Uneducated, fearful, and poorly socialized into the multifaceted
aspects of issues such as dying, grieving, and legal aspects of death, stress from dying and
death was compounded by cultural ignorance.
Perhaps then, it was inevitable that the need for education about death would emerge
during the latter half of the 20th century. Death education as an articulated focus of
study is traditionally dated to Herman Feifel’s (1959) landmark publication, The Meaning
of Death, an edited set of articles that sought to remove the taboo of honest discussion
about death. It was from such humble beginnings that the multidisciplinary field of
thanatology arose (the study of death and dying) evolving into books, journals, courses,
workshops, and Internet offerings throughout the world. Because the field of thanatology
is so new, death education has undergone significant transformation in a relatively short
period of time, approximately 50 years. This chapter will provide a brief road map of
Historical and Contemporary Perspectives on Death Education 349
death education, with a discussion of its informal and formal aspects particularly with
respect to higher and professional educational contexts (where the “movement” began).
The current status of death education (and speculation of the future) will be examined,
particularly with regard to the profound influences of the Internet on “the way we do
death.” Death education specific to different periods of the lifecycle will be discussed in
chapter 37 in “Life Span Issues and Death Education.”
There are three main themes that will be used as the overarching conceptual
framework for understanding death education: (1) the definition and articulation of the
field, (2) pedagogy and death education, and (3) the current and future concerns of
death education.
The Definition and Articulation of Death Education
Death education involves an interdisciplinary approach. A true understanding of what
death means for contemporary societies stems from examining death through an his-
torical lens, through the perspectives of other cultures and belief systems, and through
individual and shared meanings. Even political events, environmental factors, and eco-
nomic policies impact the ways in which we “do death.” In the United States, our death
education can be affected by debates on health care, in Sub-Saharan Africa it may be the
rampant HIV/AIDS crisis, and in the Mideast it could be the loss of life due to violence
and war. The content of death education is holistic, as its four central dimensions engage
the intellectual (cognitive), affective (emotions), behavioral (actions of people in death-
related situations), and personal and social values (Corr & Corr, 2013).
From its earliest days to the present, death education is recognized as occurring both
in formal and informal settings. At the informal level, death education occurs whenever
there is a teachable moment that spurs conversation and discussion about death. Unless
a family’s communication is completely closed, children are exposed to such talks
when a pet or grandparent dies, when there is a death affecting a classroom, or when
newsworthy events make such discussion unavoidable. Many adults engage in these
informal discussions as well, stimulated by a movie, current events, family crises, a child’s
questions, or an issue arising in a professional setting as when a coworker dies. Such
spontaneous discussions rely on attitudes and knowledge arising from religious teachings
and past exposure to death and dying. Unfortunately, with little education, misconceptions
and misinformation could be the result of such conversations. In cultures where death is
more accepted as a fact of life, many informal death education opportunities are available
as children and adolescents participate in deathbed vigils and funeral rituals, and sadly
are not shielded from the traumas of war, famine, and interpersonal violence. The latter,
by the way, is also a tragic fact of life for U.S. children living in impoverished inner cities
where children learn early that when somebody dies in a drive-by shooting it means the
person is not coming back.
The formal aspects of death education center on educational goals and objectives,
a curriculum, and assessment/evaluation. Its history has been traced to the first few col-
lege courses that were created in the 1960s, such as Robert Fulton’s course at the Uni-
versity of Minnesota, and Robert Kastenbaum’s course at Wayne State University, with
new course offerings subsequently appearing in departments of psychology, religion, and
sociology (Pine, 1977). Their number has mushroomed to the point that virtually every
college campus now offers some form of thanatological coursework (Doka, 2003). Death
education also can be found at primary and secondary grade levels, although the extent
to which younger students are exposed to information is difficult to gauge, as it typically
does not appear as a standalone subject but rather is integrated into other course content
as a module (Doka, 2003b). The work of Kubler-Ross (1969) highlighted the need for
death education for the medical profession and was of particular interest to nurses, who
thirsted for guidance in the care of patients who were dying of chronic degenerative
diseases.
Although the goals of those first death education courses varied, their major focus
was to create an environment where it was safe for participants to discuss a culturally
taboo topic. Additionally, they were designed to promote values clarification, reflect on
the experience of death as structured by cultural and social forces, promote understanding
of the processes of grieving and dying, prepare citizens for politically informed decisions,
and promote professional development (Corr & Corr, 2003a; Leviton, 1977; Pine, 1977).
Leviton (1977) aptly noted that the thematic glue of the goals of death education were
improve the quality of life and living as well as dying, an emphasis that remains central to
the field today. Thus, thanatology can be defined as “the study of life with death left in”
(Kastenbaum, 2004, p. xviii).
According to Leviton, the value of education about death and dying would be to
improve communication amongst those whose death is imminent and their loved ones,
help students to become more aware of measures that could be taken to prolong life
with quality, and to be able to recognize and cope with the symptoms of grief. Leviton’s
(1977) perceptive and prescient writing also called for measurable and testable means
for death education’s learning outcomes. The most apparent of these approaches has
been in the assessment of death education as a means toward the reduction of death
anxiety through increased knowledge (Durlak, 1994). Although research does suggest
that students do gain increased knowledge about topics in thanatology, such as funeral
rituals, theories of grief and mourning, the process of dying, and life span issues in death
and dying, research also indicates that the goal of lowering anxiety about death and
dying is only partially successful (Durlak, 1994; Maglio & Robinson, 1994,). However, an
evaluation of how courses on palliative care and end-of-life issues for Hungarian medical
students was more encouraging with fear of the death of significant others and fear of
the dying process significantly lowered as a result of taking the course (Hegedus, Zana,
& Szabo, 2008).
As a testimony to the farsighted vision of the pioneers (dubbed by Pine in 1977)
of death education, the goals and learning outcomes of contemporary courses in death
education have not changed significantly from those of the recent past. Rather, what has
changed is the virtual explosion of materials available to students and scholars. Scholarly
and trade books on topics of death and dying regularly appear, instructors have an
increased array of textbooks from which to choose, including several now in their 7th, 9th
and 11th editions (e.g., Corr, & Corr, 2013; DeSpelder & Strickland, 2011; Kastenbaum,
2012, respectively). Journals and newsletters (e.g, Omega: The Journal of Death and
Dying; Death Studies; Mortality; The Forum: Newsletter of the Association for Death
Education and Counseling) provide recent theoretical and empirical work in thanatology,
and of course, the Internet abounds with websites related to a cornucopia of topics in the
field. Professional organizations such as the International Work Group on Death, Dying,
and Bereavement, the Association for Death Education and Counseling, and the Hospice
Foundation of America were formed during the 1970s and 1980s and currently enjoy
respect as major contributors to knowledge in the field. Included in their missions is the
promotion of education about death and dying. As the recognition (and sensationalism)
of the importance of knowledge of death has grown, informal death education now
regularly occurs from information provided in newspapers, television, the movies, and
the Internet. Death, still a taboo topic, has nonetheless become the quirky darling of the
media (as in witnessed in several television shows with euphemistic titles such as Six Feet
Under, Pushing Up Daisies, and Go On).
Pedagogy and Death Education
Cognitive and affective components of death education
The holistic features of death education provide students with opportunities to explore
the subject both on intellectual and affective planes. A death educator needs to know if
students are taking a course in thanatology as a requirement, to satisfy their intellectual
curiosity, or to help them work through a personal issue. For a number of students, all
three of these motivators may be operating.
Over the years, two major teaching methodologies evolved. One is didactic, involving
the dissemination of knowledge, and the other is experiential, providing a focus on
affective factors, While the didactic method, emphasizing lecture, reading, and discussion
of content-driven material promotes increased cognitive awareness, Durlak’s (1994) and
Maglio and Robinson’s (1994) meta-analysis of death anxiety indicated that it is the
experiential method, with a focus on personal reflection, or a combination of didactic
and experiential methods, that aids in reduction of death anxiety. Students’ knowledge,
behavioral, and affective changes with respect to death-related issues are tied to the type
of education received.
Death Education as Interdisciplinary and Multidisciplinary
The first contemporary death educators recognized the need to draw knowledge and
approaches from a number of different perspectives, a multidisciplinary approach that
involved fields as diverse as philosophy, religion, anthropology, history, psychology, and
sociology (Corr & Corr, 2003; Noppe, 2010). The early courses frequently drew upon
guest speakers from a number of disciplines as a way of ensuring the inclusion of differing
perspectives (Morgan, 1987). That tradition continues today (Wass, 2004) and ensures
creative collaboration across disciplinary units. However, as thanatology has evolved
into its own specific field of study, it has also developed a scholarly and pedagogical
tradition that is inherently interdisciplinary in nature, the creation of an orientation that
integrates the wisdom and approaches of many traditional fields into its own framework.
Once considered experimental or renegade, courses in death education now are viewed
as legitimate on most college campuses and may even be part of the requirements for
general education or for a major. A survey of the syllabi of recent thanatology courses
by Noppe (2007) indicated that the most common topics were medical ethics, funerals,
process of dying, crosscultural perspectives, death and public tragedy, hospice, spiritual
issues, bereavement and grief, and children and death. The increase in death education
that is seen in higher education has not necessarily been true for lower grade levels,
although there is little research to confirm this assertion. It can only be a speculation that
most of the death education that takes place at lower grade levels is informal.
The “New” Pedagogy of Death Education
The teaching of death and dying has always demanded a certain degree of creativity
from instructors. However, as undergraduate education has recently enjoyed an upsurge
in interest in enhancing the effectiveness of teaching and learning via new classroom
experiences, many ideas have been adapted in death education courses. From the
earliest days of college courses in death and dying, instructors recognized the value of
experiential learning. Activities and projects have been greatly expanded in contemporary
courses, ranging from cemetery analysis, visits to funeral homes and interviews of funeral
directors, examining children’s literature on thanatological content, and student-initiated
research projects that may be presented at professional conferences. The Forum even
has a regular feature article on teaching thanatology. Recently, service learning, wherein
students perform volunteer work relevant to the course topic and simultaneously engage
in related academic activities, offers many rich experiential opportunities for thanatology
students and has been demonstrated by Basu and Heuser (2003) as an effective learning
tool in death education.
Perhaps the most significant pedagogical change in thanatology courses has been
increased involvement of the computer as a tool for teaching and learning (Cupit,
Sofka, & Gilbert, 2012). Fifty years ago, the early thanatologists could not have possibly
envisioned the information age of the new millennium. Today, thanatology courses are
offered online, sources of material are studied from a variety of websites, and students
have access to materials from sites physically remote but readily accessible in their virtual
state. The Internet has also been a wellspring of resources for informal death education,
particularly Facebook, where postings and information sharing amongst “friends” leads
to the sorts of death-related discussions (particularly when there is a tragic death) that
can bring comfort and knowledge as well as misinformation and cruel jokes (Cupit, Sofka,
& Gilbert, 2012). Even online gaming and video games, particularly those that involve
killing or warfare, may play a role in informal death education (Simpson, 2011). In chapter
37, such use of the Internet, particularly with respect to the impact on adolescent and
young adults, is further explored. (See Chapter 42 of this handbook.)
On the formal level, the number of online death education courses has mushroomed
(Cupit, Sofka, & Gilbert, 2012). These courses open up accessibility to a wider, potentially
global population utilizing original source materials in ways that were not available in
the past either to students or instructors. In addition, communication barriers between
student and scholar interaction fall away as e-mail and Internet discussion sites offer a
level playing field for intellectual interchange. Both didactic and experiential components
can be included in such courses leading to a flurry of creative pedagogical methods.
Inherent to course effectiveness of such sensitive content, however, is the need to build
a sense of community online that is perceived as a safe place to explore issues, cultural
differences, and values (Gorman, 2012).
Current Issues and Future Concerns of Death Education
The early years of death education typically saw survey courses that were part of a liberal
arts curriculum. Professional fields such as medicine, social work, and mental health saw
little in terms of formal course work; rather death education occurred in workshops and
extracurricular events that largely were one-shot affairs. Many of these modules of death
education were driven by nursing educators, who as frontline caregivers felt the a great
need to learn how to help the dying, although palliative care issues are still inadequately
covered in undergraduate nursing curricula (Mallory, 2003). The inadequacies of the
health care system to care for the dying, the right-to-die movement, and other public
policy concerns have led to increased demand for such education. The Association for
Death Education and Counseling and the Hospice Foundation of America have been
at the forefront in trying to expand death education, by offering webinars focused on
topics such as children’s grief, loss, and public tragedy, and ethical dilemmas at the end
of life. Adult and continuing education courses have also reached out to professionals
and the general public. However, most of the material is integrated within the basic
curriculum and in workshops with few full courses offered (Dickinson, 2002; Wass, 2004).
In addition, medical textbooks offer limited coverage of material pertaining to end-of-
life care (Rabow, Hardie, Fair, & McPhee, 2000). Nursing education is more progressive
and thus more courses that increasingly are a blend of classroom and online learning are
successfully offered (Kavanaugh, Andreoni, Wilkie, et al. 2009). Some specialties such
as emergency medical services do not, for the most part, offer death education, and for
those that do, the units are taught by instructors with no formal training (Smith & Walz,
1998). Also needed is more course work and workshops in medical schools that examine
and teach strategies to cope with dying patients to medical students (Williams, Wilson,
& Olsen, 2005). This development may reflect a new trend in professional training that
emphasizes more of a holistic approach, including care for the caregiver.
Today, death education has expanded into professional and graduate education.
Graduate level programs, such as the master’s level programs at Brooklyn College in New
York, Hood College in Frederick, MD, and Marian University in Fond du Lac, WI, and
certification programs, as offered by the Association for Death Education and Counseling,
are valuable in helping to develop death educators for medical and mental health
professionals. Clinical psychologists are also recognizing that they may play a significant
role in treating individuals facing end-of-life issues, although opportunities are sparse for
training in death and dying content, clinical assessment, the understanding of evidence-
based practice, and supervised practica (Haley, Larson, Kasl-Godley, & Neimeyer, 2003). A
recent study by Ober, Granello, and Wheaton (2012) of 369 mental health professionals
reported that more than half of their sample had no formal course work on grief.
A second issue that has received more extensive discussion among death educators
involves recognition of the need to understand the influence of culture and race on the
dying process (Crase, 1987; Surbone, 2008). In death education, this requirement means
going beyond treating varying cultural practices and beliefs toward death as interesting
oddities. Rather, it involves examining how culture and diversity permeate the social
construction of the dying process, the meaning of death, spirituality and religiosity,
and moral and ethical issues at the end of life. In addition, global studies have become
increasingly important in higher education in the United States, and death education has
responded to such international trends. Learning about how death education is taught
in other countries can lead to an important crossfertilization of ideas in the teaching of
multicultural content and teaching techniques. Faculty from American universities who
have the opportunity to teach death and dying abroad, learn a greater appreciation
for the role of culture in end-of-life issues and may be more effective in imparting that
approach in their death education courses in the United States (Shatz, 2002). Study
abroad programs that include death education as part of the curriculum also provide rich
opportunities for students to learn about death and dying in other cultures (Cupit, 2011).
As the United States becomes increasingly diverse, and as more student-faculty and
student-student interactions take place online within a global classroom, understanding
the impact of culture on values and cognitions about death and dying will do much
to diminish miscommunication and disenfranchisement (Cupit, Sofka, & Gilbert, 2012;
Noppe, 2004). Bordere (2009) named such understanding cultural consciousness.
Fortunately, there are a number of death educators who have worked hard to infuse
their courses with materials that recognize that we cannot homogenize thanatology
(DeSpelder, 2009; Fowler, 2008; Ruffin, 2010).
A third issue concerns the continued presence and role of the Internet in death
education. There is no doubt that both formal and informal learning will continue to
evolve and expand at an incremental pace. As new tools and technologies emerge, death
educators will have to keep up with the latest trends and learn how to effectively translate
their materials and instructional tools to an online environment (Cupit, Sofka, & Gilbert,
2012). Death educators will also have to be attuned to cultural differences as students
reach across the globe. These educators will need to be sensitive to students’ coping
with time differences, different styles of communicating and learning, and offering online
activities that will effectively educate the next generation of thanatologists. Educating the
educators to teach in an online universe should be a major aspect of graduate education.
Kastenbaum (1977), in an early examination of death education, raised a number of
important questions regarding educational techniques, the qualifications and motivations
of the death educators themselves, expectations of and by students, and the dangers
and benefits of such courses. We should not become complacent about such issues just
because three decades have passed and death education is legitimized on most campuses.
Thus, the three major trends of the future are dependent upon a focus and emphasis on
a pedagogy that relies on what is known as evidence-based practice. According to Balk
(2007), evidence-based practice refers to the mutual interaction between researchers and
practitioners to inform one another so that researchers can evaluate what are the most
effective methods in clinical practice, and practitioners can inform researchers about the
important issues that need to be evaluated. Evidence-based practice is increasingly being
applied to medical and clinical work. In education, the call for evidence-based practice in
the classroom is now being heard. Known as the scholarship of teaching and learning or
SoTL, this type of research is essential for determining if the classroom methods and goals
of educators are being met. This need for evidence-based practice may be especially
true for death education courses because of its holistic, interdisciplinary focus (Noppe,
2008). Death educators will need to know if the ways in which they deliver their content,
the ways in which they assess student learning, and the ways in which they devise
experiential exercises meet their intended purpose—and this evaluation of achieving
course objectives may be especially true for online course work. In all fields of higher
education, and for death educators who train in more informal settings, the same tenets
apply: Death education involves knowing the research, understanding its usefulness, and
translating it into educational action (Wass, 1995).
Conclusion
In a relatively short period of time, death education has changed in terms of its number
of course offerings, its broadening beyond traditional liberal arts curriculum into graduate
and professional education, recognition of the significance of a multicultural perspective,
and increased reliance on electronic media for teaching, learning, and scholarship. Yet,
the central motivation behind the creation of such educational experiences remains the
same—the belief that as more is learned about dying, death, and loss, the greater the
potential for enhancement in the quality of living.
357
Chapter 37
Life Span Issues and Death Education

Illene Noppe Cupit
Learning about death, reflecting on personal and cultural values, and understanding
one’s own emotions and those of others with regard to death and dying are lifelong
tasks. Hopefully people fill their typical days with the chores and joys of living, but there
are junctures during the lifecycle when the need to know and to be knowledgeable
about death are central. Whether the teachings about death are experiential, handed
down in cultural or family lore, learned through media interactions, or formally taught
in a classroom, all humans are continuous recipients of death education from childhood
until old age. How such death education is received is influenced by gender, social and
cultural context, life experiences, and religious orientation. Most significantly, the life
span demands and associated normative developmental tasks impinging on an individual
are important to the design and effectiveness of any educational experience in death and
dying. The purpose of this chapter, therefore, is to examine how the ways in which death
education may be enhanced when it is placed within the context of human development
Death Education and the Normative
Death Issues of the Life Span
Erikson (1968) presented the life span as a series of psychosocial issues and tasks that
confront individuals from birth until death. These issues (or crises) appear throughout the
life span, but one issue takes on a particular salience at each stage of the life span—for
example, trust during infancy. As Erikson (1968) insightfully noted, these developmental
tasks are embedded within cultural context, so that the entry into adulthood and the
tasks associated with childhood and adult life will vary with social structure. It is helpful,
therefore, to link the awareness and meanings of death with the major developmental
tasks of each stage. In addition to developmental tasks, conceptual understandings of
death framed by overall cognitive development and individual experiences, such as the
death of a parent or a sibling, greatly influence the meaning of death throughout the
life span.
Early Childhood and Death Education

During the early childhood years, death education typically and appropriately is taught in
informal ways. However it is taught, death education for children must be contextualized
in terms of how their death concepts evolve from early to later childhood. Nagy (1948)
suggested that children initially perceive death to be a transitory, reversible phase where
the dead exhibit limited life functions. During a second phase, death is perceived as a
person such as a bogeyman, who may be outsmarted by a fast and clever child. Finally,
toward childhood’s end, a mature concept of death evolves, which involves a consensual
agreement amongst adults of a particular culture and religious background as to what
death means. In the Judeo-Christian traditions of the Western world, a mature concept of
death incorporates the principles of universality, inevitability, nonfunctionality, causality,
and noncorporeal continuation (separation of body and soul, with the soul continuing on).
During the developing conceptualizations of death, a major source of education, which
may be spontaneous, comes from the behaviors of adults, both verbal and nonverbal,
and from the real and fantastic deaths portrayed in the media (Wass, 2003). Aside from
their modeling of behaviors, parents and teachers in the early grades are a major source
of information about death in the ability (or inability) to answer spontaneous questions
and offer reassurance to their children about their fears and anxieties. These are known
as teachable moments (Corr & Corr, 2003a), typically arising out of a death-related
situation (e.g., the family dog dies) and they may catch adults off guard. Many adults are
uncomfortable with such discussions, unaware of the developmental differences in death
conceptions, and are at a loss as to what words to use to explain death to young children.
Stammering through or avoiding such a conversation teaches children much about the
taboo nature of death. In such cases, books specifically designed to guide children through
the concept of death, paying mind to how death concepts differ from adults’ concepts,
have been helpful in breaking the ice (see Corr & Corr, 2013). Parenthetically, one aspect
of adult death education is how to explain death to young children. A key feature of such
explanations is providing adults with the developmentally appropriate words to use with
young children. Schaefer (1988) suggests that adults can tell children that it is a sad time,
that death refers to the time when “a person’s body stops working and will not work
any more” (p. 132). Referring to death as sleep, going on vacation, or passing away is
misleading, confusing, and ultimately frightening to young children.
Of course, one of the most potent death educators during the early childhood years is
experience. Recent work has suggested that an early acquisition of a mature understanding
of death occurs when the child has experienced a death of a loved one (Silverman, 2000a;
Silverman & Kelly, 2009), experienced a life-threatening illness (Bluebond-Langner,
1978), or has lived in an environment rife with death and violence (Barrett & DeSpelder,
1997). Unfortunately, in many areas throughout the world, children are quickly reminded
of how easily one can die from heinous slaughters, natural calamities, or rampant disease
such as HIV/AIDS (Richter, Somai, Zuma, & Ramsoomar, 2008). Perhaps the best form of
Life Span Issues and Death Education 359
education is what Corr and Corr (2013) call effective communication that occurs prior to
a death. In the absence of an immediate crisis, such effective communications provide an
attitude of preparedness in an environment of calm. It involves active listening to what
the child needs to know, not overexplaining the issue, clarifying their understanding, and
speaking honestly and in language that they can understand. It may mean that adults
have to admit I do not know.
Children also learn much about death through the media. Television, video games,
and movies provide much exposure to death-related content. For example, Cox, Garrett
and Graham (2005) content analyzed 23 death scenes from animated Disney films. They
concluded that many of the classic films distort the depiction of death, and recommend
that discussions between children and their parents could be a positive consequence of
viewing such films.
Not all media events are detrimental to a child’s death education. In April 2010,
public television premiered a special created by the Sesame Workshop entitled “When
Families Grieve” (http://www.pbs.org/parents/whenfamiliesgrieve/). The intent of this
workshop was to provide a model dialogue about death for parents of young children.
In addition to the television special, Sesame Street made a number of online and printed
resources available. Unfortunately, no assessments of the effectiveness of educational
components of this ambitious project are available. The workshop does provide a link to
bereavement camps, which are another valuable resource for the education of parents
and their grieving children. Many camps have as one of their primary goals to normalize
their grief experience through providing information and discussions of what is normal in
the grieving process (Noppe, Hames, & Schreiber, 2010) within a friendly camp setting.
Few formal death education programs exist for young and elementary schoolchildren
because teachers may be unprepared for such lessons, because of the concern that it may
do more harm than good, and because of the belief that this topic is better taught in the
home (Wass, 1985; Shackford, 2003). However, mental health professionals who work
with children in the schools have been increasing their calls for more formal school-based
death education for children (Aspinall, 1996; Shackford, 2003). Such concerns have been
voiced abroad as well. In Ireland, a survey of parents and educators of children aged 5-12
years generally supported the idea that death education should be taught in schools,
particularly with appropriate teacher training. As is true in the United States, the mixed
message stemmed from teachers’ concerns that parents would abdicate responsibility for
the children’s death education if this school-based teaching were to happen (McGovern
& Barry, 2000).
Adolescence and Emerging Adulthood
Formal types of death education may be seen in middle school and high schools, although
such coursework is relatively uncommon. The material may be integrated as units within
other subjects (health education is a favorite) or may appear as independent courses in
the curriculum (Corr & Corr, 2003a). Stevenson (2009) notes that in countries other than
the United States, death education, even the formal type, is mostly available outside of
school. Death education programs for adolescents tend to focus upon proactive education
(i.e., providing information prior to the occurrence of a death), intervention when a
crisis occurs, and long-term support (postvention). The foundation of such proactive
programs are rooted in death educators’ ability to actively listen to the adolescent,
showing acceptance of his or her feelings, and respecting the adolescent’s ability to find
solutions to his or her own problems (Corr & Corr, 2013.) Educators themselves need to
be trained to learn how to discern which of their students, facing a death-related crisis,
might be having an especially difficult time coping with their intense emotions (all the
more so during adolescence). These teens might be at risk for failing in their schoolwork.
Their social relationships may suffer. Significant changes in these behaviors may be at-
risk indicators that active intervention is necessary, a tricky challenge because many
adolescents do not trust adults enough to bare their grieving souls. Furthermore, there
are significant individual differences in physical and emotional maturity that can affect the
degree to which social support systems treat the adolescent as an adult or a child when
it comes to crisis events such as death. In this regard, culture must also be considered,
as in some countries an adolescent can be functioning with adult responsibilities and
expectations (Stevenson, 2009).
Death educators also must recognize that whereas adolescents clearly have a mature
concept of death, what concerns them about death is linked to the developmental tasks
of this period of the life span. Developmental tasks involving identity development,
increasing independence from the family, and increasing reliance on peers for support
and socialization intermingle with sophisticated use of technology and the media,
biological maturation, and the demands of a complex, global society. It is not surprising
that adolescents’ thoughts of death may be manifested in risk-taking behavior, and a
fascination with death in music, television, and on the Internet (Noppe & Noppe, 1997;
Sofka, Cupit, & Gilbert, 2012). However, because this developmental period is associated
with life-affirming activities, with an underlying assumption that adolescents are not as
vulnerable as children when it comes to death, there may be little social support available
or it may be short term. We tend to disenfranchise grieving adolescents. Unfortunately,
many adolescents actively avoid seeking help from adults, particularly those whom they
do not know; they may seek isolation, or may receive faulty advice and misinformation
from their peers. Thus they do not have the opportunity to learn that what they are
experiencing in their grief is normal.
Bibliotherapy might be particularly useful for the grieving teen. For example, Markell
and Markell (2008) offer a most interesting and creative way to teach children and
adolescents about loss and death—through the use of the popular Harry Potter series.
Sofka (2012a) found that there are a number of contemporary books, written for teens
and young adults, that explore a variety of death-related issues such as dying and death
of the self, the death of a significant other, and even explorations of the paranormal.
She recommends that future researchers investigate whether such books enhance an
adolescent’s knowledge and understanding of end-of-life issues and facilitate a change
in their beliefs or behavior. In addition, she offers perceptive recommendations regarding
the use of literature for death education for adolescents including training for librarians
and parents about resources on these scary topics. These recommendations would also
include resources found on the Internet.
For many adolescents and young adults, death frequently occurs in a sudden and
tragic way through suicide, vehicular accidents, and homicide (Hayslip & Hansson, 2003;
Noppe & Noppe, 2009). As a result, death education may be framed by crisis and occur
within the context of peer grief support groups or counseling sessions run by school
psychologists or guidance counselors. Aside from work on suicide prevention, attending
to the acute grief needs often are primary goals of those running such groups (Corr
& Corr, 2003) and as such, are not a part of continuing instruction (Wass, 2003). In
addition, educators frequently are at a loss as how to handle information during public
tragedies—they may even be required by administrative personnel to minimize exposure
of the news to their students (Noppe, Noppe, & Bartell, 2006).
It is only a slight exaggeration to suggest that many sources of information about
death pale in comparison to the amount of information available to adolescents via social
media, websites, and other online materials (Sofka, 2009, 2012b; Sofka, Cupit, & Gilbert,
2012). The Internet may serve primarily as a social networking resource; a place for
group support, blogging, and posting heartfelt memoirs to a lost loved one. However,
there is much education, for better or worse, that accompanies the time spent in these
endeavors. As Cupit, Sofka, and Gilbert (2012) point out, many informal lessons about
dying and death occur via use of websites that offer postings from grieving individuals,
memorial tributes, letters to the deceased, or information about loved ones facing a
life-threatening illness. In the privacy of their rooms, the adolescents can find solace
and learn much about the multifaceted aspects of dying and death (e.g., end-of-life
decision making, funeral rituals, controversies regarding assisted suicide). Furthermore,
the Internet is a valuable resource in exploring global concerns regarding thanatological
issues. Adolescents may be more savvy and tolerant about the richly diverse approaches
and belief systems of death and dying across the globe, although this possibility is not
empirically verified. The concern, however, is that there is no stopping of the malicious
sites that provide misinformation and communications that could be potentially harmful.
This concern is where death educators play an important role. Ideally included in any high
school education about information literacy would be lessons on determining what sites
could be misleading or potentially harmful. It is here that an environment of trust between
school personnel who have received death education training becomes valuable.
Formal courses in death and dying are found on virtually every college and university
campus in the United States (Doka, 2003b) and are well-received by students. These
courses are taught in a variety of different departments by faculty from a number of
disciplinary perspectives (e.g., psychology, sociology, religious studies). Although the

content of these courses may vary, they usually cover material on dying, bereavement
and grief, funeral customs, and medical issues. These courses have become increasingly
popular over the past two decades (see chapter 35). Many college courses are now being
offered online, reaching a broader group of students in the United States and abroad.
In addition to being intellectually engaging, students may find such courses helpful in
their coping with personal crises. College death educators must respond to the fact that
approximately 22-30% of traditionally aged college students are in their first year of
suffering the loss of a significant other (Balk, Walker, & Baker, 2010). As in the adolescent
years, young adults encounter death most often through sudden and traumatic ways
(Cupit, Servaty-Seib, Parikh et al., in review). In addition, the very real prospect of going
to war or seeing friends sent to life-threatening political hotspots and normative deaths
of grandparents and pets make such courses valued.
The developmental tasks of the college years may have undergone a change in the
past two decades. Taking an Eriksonian perspective, Arnett (2000, 2004) characterizes
the years 18 – 29 as a period of emerging adulthood. This period in between adolescence
and adulthood is defined by transitional lifestyles in terms of residence and education, lack
of role constraints, and continued identity exploration and self-focus. College instructors
of death education courses need to be aware of the anxieties created by the instability
and transitory characteristics of this period of the life span. Young adults live in very
challenging times—job prospects are poor, they have much to juggle at one time, and
are delaying marriage and family until their late 20s. If they are death anxious, they may
not find relief from their thanatology courses (Durlak, 1994), or they may question the
value of going to school and find coursework not personally relevant to their immediate
lives (Cupit et al. in process). Educational opportunities may be provided by several
thanatological organizations. The National Students of AMF (www.studentsofamf.org)
is a grief support network for college students. This organization also provides training
and an annual conference whereby information about death and loss is presented to the
attendees (primarily college students and personnel working in student services).
Not all emerging adults are found on college campuses. A number of them are
currently serving in the military or are returning veterans. Awareness of mental health
issues amongst military personnel has increased over the past several years, as the number
of mental health problems, suicides, and highly publicized violent acts by veterans have
become an almost daily feature in the news. Yet, to date, few opportunities for death
education are available for mental health counselors working with military personnel,
or for those overseas or at home who may have been traumatized by all of the death
and destruction they had witnessed (Christian, 2006). One notable exception is in the
organization Tragedy Assistance for Survivors (TAPS, www.TAPS.org) that offers webinars
and other education programs on death and loss.
Adulthood and Middle Age

The period of the life span between emerging adulthood and old age covers many decades,
and there is much variability in the ways in which life is negotiated. The normative tasks
of adulthood and middle age involve commitment—to relationships (including children),
to work, to belief systems, and to remaining active and engaged in continued growth or
generativity (Erikson, 1968). Such commitments have profound implications for end-of-
life decision making, clarifying values regarding death, and nurturing others with regard
to their own quest for understanding. It is no small task in a society that still harbors death
phobia. The need for information leads many adults to seek out both formal and informal
ways of learning about death.
In terms of career development, those interested or involved in work in the medical
field may receive formal instruction in death. Once notably lacking in the professional
curricula such information is increasing (Chapter 35, Dickinson 2007; Wass, 2004). In
health care education, material on death and dying typically does not appear in stand-
alone courses, but rather is integrated as modules in larger courses or as a part of a
clinical internship (Dickinson & Field, 2002). Dickinson (2007) notes that course work in
death for medical personnel is still limited in time devoted to the topic and in the depth
that is given. Course modules, webinars, online courses, and professional development
workshops, often associated with conferences, such as the annual conference of the
Association for Death Education and Counseling, are offered for individuals who see
themselves encountering death issues in the workplace, such as nurses, social workers,
educators, hospice workers, funeral directors, and clergy. More also needs to be offered
to human resources departments in all types of places of employment on how to help
grieving coworkers. Such training ostensibly could be offered in graduate managerial
programs as well. The need for such death education is increasing, because as the
demography of developed and developing nations shifts toward a larger proportion of
older people with longer life expectancies, many adults seek out training and careers in
the health care professions. In the United States, pressure to move to managed health
care systems demands an educated citizenry in order to make informed political and
personal decisions. Medical personnel, mental health therapists, missionary workers and
others who travel to parts of the world that have been devastated by the HIV/AIDS crisis
(e.g., South Africa), war (e.g., Afghanistan), or natural disaster (e.g., Haiti) need to learn
how to work with large populations or traumatized and bereft children and adults (Gupta,
2008; Lewis, 2008).
As the adult years involve increasing responsibilities in family and work, many adults
seek out information about death and loss in order to know how to provide for their
families in the case of an untimely accident or terminal illness. In their parenting role,
adults may desire to learn something about how to discuss death with their children. The
market has certainly responded to such demand, as witnessed by a surge in the number of
publications about death intended for children and adults. Online courses and educational
materials make such information accessible to ever more people (Cupit, Sofka, & Gilbert,
2012). In addition, some adults may face the tragic loss of a child (Hayslip & Hansson,
2003), and support groups, such as Compassionate Friends, frequently have speakers
who offer education as well as comfort.
These issues will continue on into the middle adulthood years, but as parents die and
as the possibilities for life-threatening illnesses such as heart disease and cancer increase,
the awareness of one’s own mortality moves to the forefront (Hayslip & Hansson, 2003;
Corr & Corr, 2013). As people age, they must learn how to adjust and cope with the
constraints (and opportunities) related to this time in their lifecycle (Heckhausen, Wrosch,
& Schultz, 2010) potentially leading to an increased desire to learn about dying and death.
Aside from the career-related workshops and seminars, middle-aged adults rely upon
informal death education such as from the media, books, and the Internet to enhance
their understanding about death. Most baby boomers fit this demographic, encouraging
the media to respond to concerns about their increasing encounters with dying and
death with articles in newspapers and magazines, discussion groups in book clubs and
churches, public radio programs and movies, and television shows that explore these
issues in serious and comedic venues. Admittedly not all of these sources provide accurate
information in a sensitive, effective manner, but they nonetheless open possibilities for
dialogue and exposure to issues that were considered taboo not so long ago.
Older Adults
That older adults must frequently confront death is a given as they increasingly experience
the loss of their friends and spouses (Hayslip & Hansson, 2003). Thus, encountering death,
to the point of bereavement overload, can lead to a framework of life wherein death
and loss predominate. Despite the obvious association between aging and death, older
adults are given few opportunities for education about end-of-life issues and death other
than the popular modalities discussed above. The literature on death anxiety (Fortner
& Neimeyer, 1999) suggests that relatively speaking, older adults do not necessarily
manifest high levels of death anxiety. Yet, as Wass (2004) notes, many older adults do
express concerns and fears about dying and death. Fortner and Neimeyer’s (1999) meta-
analytic study of the aged and death anxiety found higher levels of death anxiety in older
adults who were in relatively poor physical and mental health. Death educational content
specifically geared to the developmental issues of the aged, such as coping with pain
and negotiating the medical system, aspects of widowhood, or the dying process may
help to alleviate some of these worries (Wass, 2004). Furthermore, many older adults are
genuinely interested in the topics covered in death education. Learning about various
funeral customs, differing religious beliefs about death, and perspectives on grief and
loss can be favored topics in community workshops and university outreach programs for
retirees. For example, Doll (2006) reports on the success of a human development and
aging (including thanatological content) college course that involved older adults from a
local retirement community. Learning in retirement programs, now being offered by many
institutions of higher education, may be a valuable mechanism for offering courses in

death and dying. In addition, hospice nurses and volunteers may be particularly effective
in providing one-on-one educational experiences for older adults. Wass (2004) suggests
that nursing home personnel and family members be taught how to communicate more
effectively about death-related issues to older adults. Grief in an aged population may
also involve the loss of an adult child, a grandchild, or sibling, and should be addressed in
death education programs for those who work with the elderly.
The Efficacy of a Life Span Approach to Death Education
Teaching and learning implies change and development, and death education is no
exception. Given that the goals and content of death education vary as a function of
the developmental needs of its recipients, it is not surprising that a clear and consistent
picture of the efficacy of the pedagogy of death has not emerged. Relevant to the
developmental needs of the intended audience, death educators face the decision of
how to measure the effectiveness of their educational program. How do you know, for
example, if preschoolers have benefited from a teachable moment when a class pet dies?
Is it enough to report anecdotally that the children are more considerate of one another
subsequent to the discussion (Hopkins, 2002), or should they have advanced toward a
more mature concept of death?
Most of the research on the effectiveness of death education assesses content and
death anxiety, especially in college courses. For younger age groups, few systematic
assessments using psychometrically sound instruments exist. For the adult courses, those
that emphasize content in a lecture style format are more likely to encourage cognitive
changes, whereas those that focus on experiential dimensions that provide opportunities
for learners to process their own personal understandings show modest success in
modifying feelings and attitudes (Durlak, 1994).
Assessment of death education for professional development tends to focus on the
adequacy of preparation of materials for medical and mental health personnel (Dickinson,
2007; Chapter 33). Given the inadequacy of intervention efforts in communication among
physicians and patients (SUPPORT, 1995), longitudinal research needs to be continued
on the relationship between education and intervention efficacy.
Wass (2004) points out that data need to be obtained about the preparation received
by death educators, as well as standards and guidelines that would serve to improve
the quality of death education for grief counselors, many of whom work with children
and adolescents. Given that death education occurs across the life span in a variety of
formats, systematic assessment on the interaction of pedagogical techniques and age-
related needs of learners, known as the scholarship of teaching and learning would further
advance the field (Noppe, 2007). As death education increasingly becomes an online
endeavor, it is imperative that the efficacy of such courses, in terms of best practices,
delivery of content, and student learning outcomes be carefully assessed (Cupit. Sofka,
& Gilbert, 2012).
Life Span Death Education: Present and Future Needs

Age-related concerns about death and dying are normative but also reverberate to the
rhythms of a rapidly changing world. In order to maximize its humanistic potential, death
education and death educators must be responsive to contemporary issues and how these
affect youth, adults, and the aged. For example, death educators should consider how to
teach death to youngsters who are coming of age in a world of increased globalization,
terror, and violence that confront them daily on television, the Internet, and in their
personal lives. Death educators need to learn the characteristics of emerging adults, and
how emerging adulthood plays out on an international level (Cupit & Servaty-Seib, in
press). Death educators must learn how to effectively use the Internet and electronic
technology, particularly for those populations (e.g., adolescents and young adults)
who rely on such technology as primary sources of information. The development of
educational programs responsive to the needs of middle-aged and older adults, many
who are living longer, healthier lives in age-segregated communities away from families
of origin, will become of increasing importance in the future. And finally, a pressing issue
will consider who are to be the next generation of death educators and how are they to
be trained, as the field of thanatology itself matures.
Regardless of how the many questions of death education evolves in the future, there
is consensus that death education is needed and important for all ages—an important
component of life-long learning in all senses of the term.
367
Chapter 38
The Family, Institutional/Societal Systems,

and Death Education
Kathleen R. Gilbert and Colleen I. Murray
The intent of this chapter is to provide information on the ways in which families educate
their members about death and orient them to ways to behave in situations associated
with death. In addition, we will address ways in which institutional/societal systems, such
as the media, broadly defined, also serve to educate. Consistent with Corr and Corr
(2003a), we define the term death education as efforts to educate on any topic that
is somehow death-related. This notion includes both formal and informal educational
efforts regarding dying, death, grief, and bereavement.
The development of an understanding of death is a meaning-making process
(Gilbert, 1996; Nadeau, 2001; Neimeyer, Prigerson, & Davies, 2002), and this process of
making meaning begins early in life. We come to an understanding of death and how we
should respond to it through what is an essentially collaborative meaning-making process
with others. Through interaction with others, our subjective interpretations of death are
confirmed by others and given an objective reality (Berger & Luckman, 1966), which we
come to view as real because significant others reinforce its reality. The family and larger
systems are integral parts of this social construction of reality (Gilbert, 1996), and we will
explore its role in death education.
The Family as a Death Education System
Our family is the first source of death education we encounter in our lives, and its influence
continues throughout our lives. It serves as a—many would say the—primary force in
initially shaping our worldview and then contributes to the way in which we encounter
and comprehend new information throughout life. This shaping occurs in many ways:
formally and informally, directly and indirectly, in concert with other sources of death
education. It occurs obviously through such socially recognized rituals as funerals and
memorials, but less obviously through small rituals like bedtime prayers or, in the old
days, watching one’s father remove his hat when a funeral cortege passed. Everyday
activities within the family also contribute to the family’s education of its members (Keeley
& Baldwin, 2012). A family that easily deals with issues of death likely will produce
individuals who are less fearful of death than a family in which death is only spoken of in
hushed and fearful tones, if discussion is permitted at all (Weber & Fournier, 1985). The
family that struggles to deal with loss and complicated grief may present members with
pathways to resilience or withdrawal. Attempts to shield children from an adult’s pain
still result in nonverbal messages indirectly conveyed to the child. Regardless of a family’s
approach to death education, in every case, an essential role of the family is to convey,
both verbally and nonverbally, information about death—that is, to serve as sources of
death education.
The Family an Agent of Death Education
The family contributes to each member’s acquisition of cultural norms and expectations
while also leading them to adapt their behavior to fit those norms. Typically, we think of
this influence in terms of values, standards, beliefs, and appropriate behaviors associated
with those values, standards, and beliefs (Day, 2010). Acquiring such socialization allows
family members to function within society.
An example of this informal education is the way in which children often are socialized
along gender lines toward different male and female roles. According to Doka and Martin
(2001), boys and girls are informed in different ways, leading them toward approaching
death and grief differently. Boys engage in team play, with interactions centered around
activities. They are encouraged to view relationships in a hierarchical rather than col-
laborative way and focus on control of their emotions. Girls, on the other hand, are en-
couraged to be more cooperative, have more empathy for others, to share confidences,
and to be more supportive of others. The result is different, resulting in complementary
approaches to life and death and to grief that generally follow along lines fitting each
gender role. Recent work in Canada found these patterns continue into adulthood, with
bereaved fathers demonstrating more focus on work and task-focused coping (Alam,
Barrera, D’Agostino, Nicholas, & Schneiderman, 2012). In contrast, bereaved mothers
used more child-focused coping and were more actively nurturing the relationship with
their surviving children.
This educational process occurs most obviously in children’s early years. Less obvious,
and less studied, is death education that takes place across time as family forms shift and
change when members join, leave, and create new families. Yet, this process continues
throughout life, as members respond to the needs to fulfill new roles within their family as
it evolves over time. One of the authors of this chapter (KG), having grown up in a family
whose death-related behavior was heavily influenced by its Eastern European heritage,
was shocked when attending the funeral of her grandmother-in-law, to see, among other
alien sights and experiences, Mammaw dressed in a negligee in the casket. She was not
“waked” for long hours, with coffee provided in the basement of the funeral home.
Instead, the family held a viewing that lasted 2 hours, in the evening. Although there
were similarities, many aspects of the funeral and its aftermath were different, requiring
The Family, Institutional/Societal Systems, and Death Education 369
that she (KG) be quickly tutored on role-appropriate behavior. The other author (CM)
grew up in a rural family that routinely took photos of family members in the casket after
death. These served as reminders of the actual loss and a source of comfort. Only when
she enrolled in her first graduate course in thanatology did she realize that other students
found this to be a bizarre practice since the topic had never come up in interactions
outside the family prior to this exchange. A practice that had been common during the
advent of the camera for mailing to those family members who lived too far away to
attend the funeral had fallen into disuse as family mobility changed, cameras became
commonplace, and visual images were out of step with the focus on remembering the
deceased as they had been—active and vibrant.
Talking about death in the family. Family members attempt to anticipate questions,
concerns, and needs when they prepare for an impending death-related event, such as
a funeral. This preparation is most obvious with children, but, as noted above, continues
through the life of the family. In terms of children, and depending on the family, parents
might talk with their child about what to expect and how to behave, they may provide
coaching, or they might simply tell the child to behave, not ask questions, and not act
out. Some parents might choose not to involve the child or refuse to answer questions.
In adulthood, couples might rehearse appropriate ways to respond. The film The Funeral
(Hosogoe & Itami, 1984), demonstrates such rehearsal clearly as a bereaved daughter
and her husband watch instructional films to prepare for their roles as bereaved family
members in her father’s Buddhist funeral.
Children’s books about death and loss along with other media may be used as a
resource by parents who wish to supplement their own knowledge base as they address
their child’s questions (Carney, 2003-2004). Portrayals of parents in these books can
be used as models or standards (by children or parents) as to how they should interact,
educate, or help children cope with death (Corr, 2006-2007). These types of information
exchange may be planned, possibly in response to a death or in anticipation of a death in
the family. They may also happen spontaneously, in response to some sort of triggering
agent or event. Losing a pet (Kaufman & Kaufman, 2006) or hearing someone discussing
a death can be such an event or agent. The death of a pet can be a particularly difficult
loss for a child, and parents must be sure not to trivialize the death (Kaufman & Kaufman,
2006) as they discuss it with their child.
In addition to children’s books on death, family members may refer to informational
books on death, dying, loss, and grief for their own use or as a resource to help other
family members. Increasingly, websites and other Internet resources serve as informational
resources (Sofka, 2012a). In addition, other media, like television programs (Charkow,
1998) or films (Cox, Garrett, & Graham, 2004-2005) might be used as a planned or
spontaneous triggering agent for discussion.
Families also can be involved in the direct and indirect death education of adolescents.
In addition to informal education during teachable moments (e.g., after a vehicle-related
death of a peer, or the media reporting of soldiers’ deaths in war, or suicide of a celebrity)
they can share in death education that combines school instruction with family discussions.
Waldrop and her colleagues (Waldrop, Tamburlin, Thompson, & Simon, 2004), found
that the addition of family discussions to school activity increased students’ comfort level
with the idea of organ donation. Although the study looked only at students’ response
to the discussions and did not look at family changes, it would be interesting to learn
about effects of the discussions on the larger family, that is changes in comfort level in
discussing death, the effects on the discussions, or any end-of-life decisions that were
made by others in the family.
Modeling of death-related behavior. Another way in which families teach their
members about how to behave when they are confronted with death is through the
modeling of appropriate behavior associated with death, essentially serving as role
models for family-approved behavior. Young children, in particular, learn by example,
and significant others in the family become role models for how to behave in situations
associated with death. In this modeling, the family members serve as examples of the
norms and behaviors associated with death.
Families and learning styles. Family members often try to adapt their informal or
formal teaching about death to the needs of each child, considering the child’s cognitive
level and needs. One factor families may consider is the child’s learning style (e.g.,
whether a child learns best through visual, auditory, or tactile experience). Dozens of
theories have been proposed on the learning styles of individuals, and there is much
debate among psychologists and neuroscientists as to where general education tailored
to the learning style of the child has any effect on learning (cf. Pashler, McDaniel, Rohrer
& Bjork, 2008). There is a lack of systematic research on this issue as applied to families
and to death education in particular. Although some family members may share a style
of learning, there is no evidence that there exists an overall family learning style. Studies
of learning and death education would need to consider the adult’s own learning style as
it may impact the presentation of death education to younger family members. A parent
who learns best visually or through touch may encourage the child to view the body in
the casket and feel the hand of the deceased to better understand how death differs from
life. Others who don’t share this style may be uncomfortable with such an approach.
Regardless of the particular learning style or method of presentation, an understanding
of death includes both cognitive and affective components.
Families Making Meaning: Collaborative Death
Narratives in the Family
From the family systems perspective, the critical process that underlies all interaction
in the family is the process of meaning making (Nadeau, 2001). It is important to note
that the family’s involvement in the attribution of meaning is embedded in the broader
culture and society (Gilbert, 1996) and is a process that is ongoing throughout the exis-
tence of the family. As family members encounter new information in their environment
or are faced by situations when old meanings no longer fit, they test their theories and
use other family members as a reality check on what things mean and how one should
respond. If family members find their own views confirmed by others in the family, these
views are given objective reality—what they perceive comes to be seen as reality because
significant others also see it that way (Berger & Luckman, 1966; Thomas & Thomas,
1928). If their views are challenged, they may question their views, that of their family
members’, or both (Gilbert, 1996). The death of a child in the family, for example, may
result in radically different perspective on the meaning of the loss and the implication
for family members. Parents may feel a need to protect the surviving children, may feel
overwhelmed by their own grief, or may perceive the other children as unaffected by the
loss. The children may end up with a distorted view of their sibling’s death, its meaning
for them, their culpability in the death, and the legitimacy of their own rights as a griever
(Schwab, 1997). During periods of uncertainty, stress, or the terminal illness of a family
member, informal education from voluntary, recurring experiences with small talk or the
creation of rituals can lead to a sense of security, reassurance, and calming for children
(Keeley & Baldwin, 2012). It can strengthen family identity (Baxter & Braithwaite, 2006).
Members can socially construct meaning of the loss by generating, renegotiating, or even
resisting change in everyday interactions (Hollander & Gordon, 2006).
Mutually validated views facilitate communication, provide structure and meaning
to family interactions, and serve as the basis for familial coping behavior (Reiss, 1981).
However, the various family systems and larger systems in which we live may result in
family members holding contradictory or competing views on appropriate beliefs and
behaviors associated with death. This discrepancy in views can be seen most clearly with
children of divorce, who may face contradictory views from their parents in each of their
households. An example would be when religious beliefs are a key source of disagreement
and conflict in the divorce. These children could then find themselves pulled between two
different and conflicting belief systems about death and the afterlife and might find the
views and expectations of their parents, now untethered from each other, changing and
evolving away from each other over time.
Most authors in Western cultures have made the assumption that optimal family
education about death includes open communication, emotional disclosure, and sharing
of experiences (Hooge, Neimeyer, & Rober, 2011). However, recent empirical studies have
not demonstrated that this sharing of emotions results in bereavement recovery (Meads
& Nauwen, 2005; Zech & Rimé, 2005). Avoidance and not expressing grief may, in some
situations, add to adult resilience by providing a distraction from the death (Boelen, van
den Hout, & van den Bout, 2006). In those families where anger and hostility commonly
occur during interactions, communication between the members may not effectively
facilitate death education or grieving. Extroverts may benefit more from social support
than introverts, and those whose personalities tend toward neuroticism may not reap the
benefits of making sense or finding benefits from loss that can occur for others (Boyraz,
Horne, & Sayger, 2012).
Decision making in the family. The same potential for conflict or collaboration on
attributed meaning may be found in families dealing with a variety of decisions that
are made in the family: choices made about end-of-life care, advance care planning
discussions, wakes, funerals, and periods of mourning. These decisions come with
significant transitions in the family’s life course and are associated with high stress
(White & Klein, 2007). In her study of end-of-life decisions, Gauthier (2005) found
that family concerns were an important factor in the decision making of terminally ill
patients. Increased dependence, the need to relocate to be near family, decisions made
to accommodate the needs of family caregivers, the economic burden on family, concerns
about a lack of communication were all social concerns that were associated with family
function. Interestingly, the study did not identify family factors that positively affected
end of life decision making, but it may be that the participants saw the focus of the study
on impediments to easy decision making.
Rituals as a tool for dealing with death. Rituals often become more valuable to the
family during times of loss. Rituals are composed by metaphors, symbols, and actions that
are packaged in a highly condensed, time and space-bounded, dramatic form to establish
and maintain family identity (Imber-Black, 2004). Family rituals serve five functions
within families: relating, issues of expressing and maintaining relationships; changing,
transitions for self and others; healing, recovery from relationship betrayal, trauma, or
loss; believing, voicing beliefs and making meaning; and celebrating, affirming deep joy
and honoring life with festivity (Imber-Black & Roberts, 1992).
In their overview of cultural variations in approaches to end-of-life decisions as well
as associated rituals, Searight and Gafford (2005) described a wide range of approaches
to decision making in the family, even to the extent of whether or not the dying person
should be involved in the decision-making process or even if he or she should be informed
that a decision needed to be made. In a world that allows greater mixing of culturally
diverse individuals and the blending of cultures in families, issues of meaning may become
intense at these times (Klessig, 1992).
Death Education in Institutional/Societal Systems
Just as the family plays a role in death education, so too do societal and institutional
systems. From our general society and our personal communities, we are exposed to
information and beliefs about dying, death, and bereavement through formal and
informal means. In addition, we learn about responses and practices surrounding death-
related events from various social institutions.
Although they are a key source of death education, and the principal venue for
formalized death education, the role of educational institutions (i.e., schools and colleges)
as well as religious organizations will not be addressed in this chapter. The ways in
which death education plays out in these more common sources of death education are
addressed in greater depth in other chapters in this text. Instead, we focus primarily on
the role of media as a source of death education. We will address traditional forms of
media (i.e., print and broadcast), but will place more emphasis on the role of the Internet
in death education, as it incorporates elements of earlier forms of media and includes the
unique aspect of interactivity and bidirectional communication among members of the
Internet community. An example of how the Internet is being incorporated into death
education at the time of the publication of this text then will be presented.
Media and Death Education
Print media. Books and other printed materials are readily available resources for death
education. As noted earlier in this chapter, these resources can be used either directly,
as a tool for discussion of death, particularly with children, or as a source for detailed
information on death, dying, and bereavement. Schuurman (2003-2004) has identified a
selection of high-quality texts that can be used for a variety of audiences so they may talk
with children. Other resources, like self-help or professional texts, articles in newspapers
and news magazines, pamphlets, and circulars may be used for both informal and formal
death education, both for adults and for children. An excellent example of a journalistic
resource for adults is the article by Klein (2012) mentioned earlier. The difficulty is in
selecting high-quality resources that meet the specific needs of the reader.
Often, when a major loss event occurs, journalistic and other publishing sources
will produce death-related articles and other materials. Examples range from personal
accounts to depictions of the response to natural disasters, like hurricanes and related
flooding and human-made disasters, like the mass shooting at a movie theater in Aurora,
CO, in 2012. A more personal and relatable example of the first is “The Long Goodbye,”
(Klein, 2012), addresses issues of difficult end-of-life decisions the author had to make
through his parents’ dying process, as well as his own progression through grief and
life review that resulted from his parents’ failing health and death. Articles such as this
one can be an informal death education resource, but could be used for guided student
discussion in a formal death education course.
Public television. Public television has had a long history of developing and presenting
content that addresses death and dying. PBS, with its inherent educational mission, has
provided death education programming over the years. Many of these programs continue
to be available for purchase or immediate play and have accompanying educational
materials for download on the PBS website. “Dealing With Death” presented under the In
the Mix banner, is an example. This program, directed at teens and with its own website,
has a companion discussion guide, for use in formal death education. Studies have been
conducted on the effects of death-related content in educational service programs. In the
case of Sharapan’s (1977) study of death content on “Mr. Roger’s Neighborhood”, for
example, letters from families indicated that they engaged in discussions of death-related
themes after viewing the show.
Death education in news media. Journalists engage most frequently as informal
death educators. Newspapers and magazines publish stories of individuals who have
been diagnosed with a life-threatening or terminal condition or have coped with the
death of loved ones. Narratives of these stories often are selective and serve a social
purpose. Following the Oklahoma City bombing, the narrative that developed was one
of brave, highly resilient Midwesterners. Levine’s (1996) content analysis of news media
reports showed that any contrasting story line was seen as somehow abnormal.
Similar to the media stories of deaths of common people, the death of a public
figure often takes on more significance in the media than the simple recognition and
memorializing of an individual. These celebrity deaths often become media events
(Hearsum, 2012; Water, 2010), providing opportunities to present an inspiring death
narrative, as well as implied rules for ways in which the bereaved should behave (Thomas,
2008). The impact of the coverage of these deaths can extend over decades. We, the
authors of the chapter, still can remember childhood images of President Kennedy’s
funeral in 1963 and the admiring observations of television commentators as they talked
about Jackie Kennedy’s behavior. The message was that contained, reserved, tear-free
mourning was socially desirable while any overt display of grief was, by implication,
wrong.
Television and, to a lesser extent, radio news can have a uniquely intense emotional
impact, and concern has been raised about the coverage of death and grieving in the
news media (Gamino, 2005). Of particular concern are images of violence as news
content and the coverage of personal details. The phrase “If it bleeds, it leads” is said to
describe and define the guiding rule of television news. Graphic images sell programs and
sensationalistic stories have a longer shelf life. Violent images are used in news coverage
to portray consequences of events and, as education about death and that which is
valued in the society, the portrayal of those who should receive sympathy and support,
those who deserve to die, who should receive our attention if missing, are all part of a
possibly unintended educational process.
Saylor and his colleagues (Saylor, Cowart, Lipovsky, Jackson, & Finch, 2003) studied
elementary students’ media exposure to images of the 9/11 terrorist attacks. Even though
the children in their study were in South Carolina and did not know anyone directly
affected by the attacks, evidence of effect of television viewing of both positive and
negative images resulted in higher levels of symptoms of posttraumatic stress disorder
(PTSD). Thus, the exposure to trauma-related media images appeared to have been the
trigger for higher symptoms, regardless of valence of the images. They did note that
the children who developed symptoms may have been predisposed toward developing
them. Saylor and his colleagues also found that the media balanced positive and negative
images, so it was not that the children were exposed to primarily negative images.
Therefore, the situation may be more complex than simply searching for a simple solution
to negative effects.
TV and Film (fictional). Fictional death scenes in film and on television can trigger
strong emotion, can emotionally engage the viewer, and can serve as a tool for discussion
of death and dying. Schiappa and her colleagues (Schiappa, Gregg, & Hewes, 2004)
examined the effect that college students’ viewing of a television show, “Six Feet Under,”
had on the death attitudes. They found that viewing the program adversely affected
death attitudes among students, a finding consistent with earlier studies. On the other
hand, concerns among students about what happens to the body after death seemed to
have lessened. As discussed earlier, television viewing is a common tool for parents to use
as they address their children’s questions about death. Perhaps the goal, then, should not
be to desensitize people to death through the use of television but to help them explore
their attitudes and beliefs.
Criticisms of fictional depictions of death, dying, and grief in the media include the
fact that images presented of death are unrealistic. Meyer (2005, p. 3) looked at major
films and identified several distortions: narrative shortcuts that advance the story of the
revenging hero, often after the death of an innocent; a primary focus on the violent act
itself; consequences that are commonly abbreviated and edited to include only glimpses,
or are verbally or visually implied; in some films, violent consequences are shown in
graphic and gory detail; on television, where the Federal Communications Commission,
viewer complaints, and advertisers’ concerns limit the range of options, images of death
may be sanitized.
Cox, Garret and Graham (2004-2005) examined the depiction of death in Disney
films and found the depictions of death were also unrealistic and often accompanied
by some sort of moral message. Because of this moral message, they recommend that
children should view these films under parental supervision, as the children may need to
process, among other things, the idea of someone “deserving” to die.
The Internet. The Internet holds a unique status as a medium for communicating
information regarding dying, death, and grief. Indeed, it holds a unique capacity for
transmitting all other media discussed here—and more. It is possible to acquire all of
the information available through print and broadcast media through the Internet. In
addition, an ever-expanding variety of resources for both formal and informal death
education is also available. Universities and colleges now provide online death and dying
courses and professional organizations like ADEC offer webinars that provide needed
information and provide continuing education units for professional advancement.
Informal death education is available from a variety of resources. Open to Hope (Horsley
& Horsley, 2012) and Griefnet (Lynn & Rath, 2012) are examples of resources that are
directed primarily at a lay audience, providing material authored by scholars in the field,
written with bereaved readers and their supporters in mind. A casual search of the Web
provides an astonishing array of informational resources: static Web pages; chat rooms;
bulletin board systems that may include online support groups; Web logs (i.e., blogs),
which are personal web pages established by individuals to tell their personal story or to
address concerns of personal interest; video diaries; podcasts; audio recordings or videos;
and online book and media stores. Given the organic, growing nature of the Internet, this
list may provide only a subset of available resources at the time that you are reading this
chapter.
As with any form of information exchange, the quality of these resources is a concern.
The information may be inaccurate or biased, information that is developmentally
inaccurate or culturally insensitive, websites that are not user-friendly or are poorly
designed—these can all make the use of the Internet for death education problematic,
especially when used for informal death education. Sofka’s (2012a) guide to evaluating
the quality of informational websites is a useful tool and one we highly recommend.
Death Education, the Internet, and Returning Military Personnel
With the end of the Iraq war and the drawing down of the war in Afghanistan, military
personnel are returning home, many with significant challenges. One that has received
considerable attention in the media is what has been described as a suicide epidemic
(c.f. Mulrine, 2012). Military personnel typically have a lower suicide rate than is found
among the general population; this prevalence rate is not true for current military/veterans
who have seen active duty in Iraq and Afghanistan (Kang & Bullman, 2009). Although
Kang and Bullman argue that the rates do not reach epidemic proportions, others have
expressed greater concern (c.f. Kuehn 2010), principally because of gaps in care provided
to military and veterans and in the willingness of military personnel to avail themselves of
resources (Kuehn, 2009).
Death education, as it focuses on suicide risk and suicide prevention, may prove
useful in meeting the needs of returning military and veterans. At present, potential
contributing factors and their role in suicide risk are hypothesized, but the evidence for
their role is still uncertain (Kuehn, 2010).
Various forms of media noted earlier in this chapter serve an educational purpose for
returning military and their families and many of them are available through the Internet.
Also, as noted earlier, heavy dependence on news media may result in a skewed and
sensationalistic view. A resource that has been established by the U.S. Department of De-
fense, Military OneSource (www.militaryonesource.mil), provides clear, straightforward
information that is well-sourced and written for a lay audience. In addition, the website
of Tragedy Assistance Program for Survivors (TAPS, www.taps.org) has been established
to serve as a resource for survivors of the death of military personnel. It is, however, not
as extensive as Military OneSource; it serves primarily as an access point for finding care
and support.
Conclusion
Both the family and societal systems contribute to the education of family members with
regard to death and behavior related to it. They make this contribution through the
sharing of information, and in maintaining a structure in which collaborative meaning
about death can come to be known. The societal/institutional system also contributes to
the knowledge of individuals about death and related behaviors. Images of death, dying,
and grief presented in the media are only partially realistic, intended to move a storyline
forward, and to serve a larger purpose. Thus, caution should be taken in using these as
resources for death education, in formal settings or in the family. The Internet can be seen
as a cornucopia of information on dying, death, grief, and bereavement, allowing access
to other forms of media for both formal and informal death education.
379
Chapter 39

Death Education
Carla J. Sofka
Perceptions of ethical and legal issues related to death education are quite polarized. This
chapter will summarize ethical and legal issues related to death education from a range of
perspectives. Literature can be categorized into contributions from two camps of authors:
the advocates or believers (widely published thanatology scholars, death educators, and
experienced clinicians affiliated with hospice or thanatology-oriented areas of practice)
and the critics (stories published in the mass media or by conservative columnists). The
absence of literature representing a third camp—the skeptics—is surprising.
Death education, once called a nasty little secret by vocal critic Phyllis Schlafly (1988),
has been in the public eye for many years since Schlafly’s scathing exposé and the video
she helped produce with the Eagle Forum of Colorado that aired on 20/20 on September
21, 1990. Death education has also been described as an edufad (McKeever, 1999).
Patrick Vernon Dean (1995), a death educator and advocate, was grateful to the critics
for breaking the alleged silence about death education. Death education efforts continue
on many levels as do the debates and discussions about ethical and legal issues connected
with them.
Ethical Issues
Merriam-Webster Online (2012) defines ethics as “a set of moral principles or values,
or a guiding philosophy,” and ethical as “involving or expressing moral approval or
disapproval as well as conforming to accepted professional standards of conduct.” Ethics
and ethical issues are relevant to death education from personal and professional points
of view. Significant differences exist in personal and professional perceptions of the
appropriateness and value of death education.
One must be mindful that remarkable variations in personal values about these
topics are influenced by factors including, but not limited to, individual differences in
age, life experience, cultural and religious/spiritual background, and differences in
political perspectives and other societal factors. Corr (1984) notes the importance of the
valuational dimension of death education—the role of death education in identifying,

articulating, and affirming basic values that influence human lives and death-related issues
in society. While some persons assume that fundamental values can be separated from
everyday interactions with life and death (Corr, 1984), death educators must respect that
“individuals bring to their educational programs experiences that have emerged from a
diversity of social, cultural, and religious backgrounds” and “provide for an appreciation
and utilization of individual differences” (International Work Group on Death, Dying, and
Bereavement, 1992, p. 63).
There are legitimate concerns about death education that focus on (a) when does
death education occur, (b) to whom and under what obligations does death education
occur, (c) where does it occur and by whom it is taught, (d) what content is included,
(e) how death education opportunities are delivered, and (f) how the outcomes of death
education efforts are evaluated. These factors will be used to structure this examination
of ethical issues related to death education.
When Does Death Education Occur?
What event might prompt an individual to seek out an opportunity for death education?
Why might death education efforts be initiated to reach a specific audience? Corr and
Corr (2013) note that death education can occur in three ways: formal education, informal
education, and teachable moments.
Opportunities for formal or planned education are affiliated with organized instruction
at levels ranging from K-12, college courses, professional and postgraduate education,
in-service trainings, or workshops for clients or the general public (Corr, 2004; see also
chapter 37 in this handbook). Significant concerns arise when participants are minors. If
a death education opportunity is sought out by an adult capable of informed consent to
participate, ethical issues may arise if the teacher is not competent or if there is a negative
reaction to the course by a participant. Materials for use in death education exist for
individuals of all ages, including children’s books and young adult fiction that can be used
in a variety of ways (Berns, 2003/2004; Markell & Markell, 2008; Sofka, 2011).
Informal education, often unplanned, is provided by parents or within family or social
group interactions (see chapter 38 in this handbook). Informal education is a lifelong
process of lessons learned as a result of personal experiences, the experiences of others, or
exposure to thanatology-related issues through the media or travel (Corr & Corr, 2013).
Opportunities for informal education also arise as a result of teachable moments:
unanticipated events in life that provide educational insights and lessons for personal
growth (Corr & Corr, 2013). These moments often combine a need for support with
opportunities for education about life and death. Silverman (2000a) also advocates for
wisely using teachable moments in the lives of children to promote competence in dealing
with loss and grief.
Ethical and Legal Issues in Death Education 381
To Whom and Under What Obligation Does

Death Education Occur?
Who is the intended audience and what are the obligations of death educators to the
intended audience? The answer to these questions varies tremendously depending on the
setting and the intended goals and content. Ethical issues often come into play when the
target audience includes minors, when parents have not been involved in the planning, or
when parental consent has not been secured prior to their children’s participation.
Death education efforts for children may be a necessity in light of the situations
involving loss and grief that are commonly experienced by children in our society. At what
age is it appropriate for children to participate? Developmental levels of children and
the readiness for children and adolescents to deal with death education topics should be
carefully assessed (Gibson, Roberts, & Buttery, 1982). A child may be involved in death
education at an early age due to a teachable moment combined with the presence of an
adult who is comfortable discussing relevant topics and skilled at communication using
age-appropriate language (e.g., Brent, 1977-78). Death education efforts for children
with special needs and adults with developmental disabilities must also be tailored to
account for developmental and cognitive challenges (Hoover, Markell, & Wagner,
2004/2005; Kauffman, 2005). Markell (2009) and Stevenson (2010) provide detailed
discussions of death education as potential interventions for children and adolescents.
Participants of any age may have negative reactions to a death education effort.
Kübler-Ross and Worden (1977-78) reported that adults attending death education
workshops were people who, for professional or personal reasons, wanted to come to
grips with death. The relationship between personal experience with loss and participation
in death education opportunities merits consideration.
What information about students should be considered prior to their participation
(Gibson, Roberts, & Buttery, 1982)? Are there contraindications for participation? Using
data collected from death education classes over a span of 20 years, Brabant and Kalich
(2008-2009) documented that the number of students with personal grief issues enrolled
in these courses were “both substantive in number and consistent across time” (p. 15).
Their findings support the following suggestions documented in previous literature that it
is the responsibility of the instructor to (1) anticipate and be sensitive to the death-related
experiences of their students and (2) be skilled in counseling and crisis intervention
techniques or identify skilled professionals to be available for follow-up with participants
for whom the experience triggers a need for support and/or access to community resources
(Doka, 1981-82; International Work Group on Death, Dying, and Bereavement, 1992;
Leviton, 1977). Brabant and Kalich (2008-2009) also discuss the relevance of the Code
of Ethics of the Association for Death Education and Counseling (http://www.adec.org/
Code_of_Ethics/1725.htm) for death educators who utilize experiential exercises in their
teaching, noting the importance of respecting the student’s right to determine the degree
to which he or she self-discloses and the need to separate evaluation of the student
from any consideration of self-disclosures made within the course. They also encourage
educators to carefully consider how to ensure the confidentiality of students who self-
disclose about personal experiences.
Cook, Oltjenbruns, and Lagoni (1984) explored a fascinating issue: Do death
education programs have a ripple effect on individuals who do not even attend? These
authors noted that “death education programs appear to serve as stimuli for death-
related thoughts and conversations that extend beyond the boundaries of the instructional
setting” (p. 189). Identification of these types of ripple effects and the mechanisms by
which they operate is an important topic for future research.
Where Does Death Education Occur? By Whom Is it Taught?
The answers to the questions Where does death education occur? and Who is the
teacher? have a significant impact on whether ethical issues are present. Key issues of
debate include the implications of the setting, how the teacher is related to the student,
and the qualifications and characteristics of the death educator.
Some believe that death education should not occur in schools but in the home
(Noonan, 1999). Some advocate for death education within the context of religious
education, health education, or family-life education (Crase, 1981; Moore, 1989;
Somerville, 1971). Death education is increasingly occurring in community-based settings,
through the media, and online (Cupit, 2013; Cupit, Sofka, & Gilbert, 2012; Gilbert
& Murray, 2013). One’s views about the appropriate setting for death education are
largely influenced by the valuational component of death education previously defined
(Corr, 1984). At the center of this debate is the following question: Does instruction that
instills critical thinking (instead of values clarification) undermine parental authority? This
important question remains to be empirically explored.
Dean (1995) found that parents and teachers, with very few exceptions, share the
goal of acting in the best interests of the children. Family-life educators have been noting
the importance of death education for many years, and it should be noted that life
education, of which content on loss, death, and grief is included, is commonly occurring
in schools in Japan (Yomiuri, 1998) and Taiwan (Wong, 2003). The view held by Dean
(1995) of the parent-teacher relationship as a meeting of the minds rather than the
battleground envisioned by Schlafly (1988) can guide the development of effective death
education partnerships in the schools.
These partnerships can be facilitated by: (1) considering the readiness of the
community and the compatibility with community value systems when selecting and/
or developing appropriate curriculum materials and (2) identifying strategies to deal with
moral, ethical, cultural, and religious/spiritual considerations based upon the societal and
family context of students (Gibson, Roberts, & Buttery, 1982; Leaman, 1995; Markell,
2009; Stevenson, 2010). Common concerns raised by parents and community members
about death education initiatives can be effectively managed by proactively involving
them in the planning stages and monitoring for reactions once the initiative has been
completed (Gibson, Roberts, & Buttery, 1982; Leaman, 1995; Silverman, 2000). Death
education should be viewed as an ongoing process throughout the lifecycle, with
responsibility shared by the home, church, other community agencies, and the schools.
The most common forums for death education on a daily basis are the print, electronic
(radio, television, and online), and entertainment media. Most death professionals can
readily give examples of times when the media proved a great resource, but also recall
situations where individuals impacted by tragedy have been revictimized by the media
during the time that they or their situation was newsworthy.
Informational support is a valuable resource that is often eagerly sought out during
times of crisis or tragedy (Sofka, 2012a), and the media provides timely information of
importance to the public. Stories involving thanatology issues that are sensitively and
accurately written (1) can validate and normalize an experience or reaction, (2) provide
valuable information about resources designed to address unmet needs, and (3) educate
the public about ways to support those impacted by these events. Stevenson (1990) also
notes that the media can inform the public about the benefits of death education.
The role of the entertainment media must also be recognized, and we are all recipients
of death education when we begin to watch cartoons or Disney movies. Exposure has
the potential to influence children’s conceptions of death as well as opportunities to talk
about what they have seen with peers or adults (Cox, Garrett, & Graham, 2004-2005).
While the accuracy of the information gained in some cartoons is questionable (e.g., Wile
E. Coyote’s ability to cheat death), wonderful vehicles for death education have evolved
(e.g., “Mr. Roger’s Neighborhood”, “Sesame Street”). According to Bader (2001), the
entertainment media can also put death in the public eye, potentially influencing the way
that the general public perceives death professionals.
Death education in the media can have benefits, but at whose expense? It is not
difficult to find horrific examples of the insensitivity and unethical behavior by reporters
and the media outlets that disseminate the stories. The media can skirt dangerously close
to or cross the line of appropriateness in the process of educating the public. Books about
media ethics note the fundamental conflict between the public’s right to know and an
individual’s right to privacy (Kieran, 1997) and the challenges inherent in accountability
of the media to members of the public (Pritchard, 2000).
Additional concerns involve the impact on people who are contacted by the media
and the impact on viewers who are exposed to the images and content of a media report.
What is the impact of media contact and the subsequent coverage that occurs on survivors
of the deceased? How does exposure to crisis, tragedy, and death in the media impact
individuals who have a similar experience in their past? Does repeated exposure to this
content desensitize individuals to thanatology issues over time? Since research exploring
the impact of exposure to images of catastrophe has identified responses ranging from
increased stress and vicarious trauma (e.g., Kaplan, 2008; Propper, Stickgold, Keeley, &
Christman, 2007) to transforming the viewer in a positive, prosocial manner (Kaplan,
2008), death educators have a responsibility to carefully consider how to wisely use these
resources in death education efforts.
As previously noted, community death education opportunities are becoming

more common and occur through local health care organizations (particularly hospice
programs), senior centers, adult education programs, or even through community
education offerings of local department stores. Another significant ethical issue involves
the qualifications and characteristics of the death educator. Who is motivated to promote
and teach death education? Some may join the field due to its popularity (Pine, 1977).
Leviton and Kastenbaum (1975) wondered what kind of person is tapped to teach death.
Since some death educators may self-select into this role, it is important to note that the
experience of a significant loss in one’s life may result in the desire to become a death
educator.
There may be times when the personal lives of death educators have an impact on
their professional roles and responsibilities. Noppe (2004) poignantly describes having a
pedagogical out of body experience (described as being the recipient of her own death
education, p. 4) while dealing with her mother’s illness, death, and coping with her
grief. She notes that death educators are “ultimately the survivors of our own lessons”
(p. 4). Manis and Bodenhorn (2006) recognize the importance of examining the meaning
making of life and death on a personal and professional level to maintain personal well-
being, and Stillion (as quoted in Bordewich, 1988) believes that death educators must
have training in handling their own feelings about death, dying, and loss. One’s personal
experience must be used without negative consequences to the students or the course,
such as becoming upset or overinvolved or imposing one’s own values and style (Engel,
1980-81). Wass (1995) wisely notes that personal experiences are helpful, but “they do
not transform us into death educators” (p. 334).
The literature has also identified characteristics that are important for death educators
to possess: (1) thorough knowledge about thanatology and the willingness to be a life-
long learner in light of a constantly changing knowledge base; (2) basic knowledge about
scientific study to the extent that the educator becomes an educated consumer of the
research, determines its usefulness, and translates research into educational action; (3)
appropriate training as a death educator to acquire competencies and techniques that are
necessary for effective teaching; (4) the ability to integrate knowledge about loss with
a student’s developmental level; (5) sensitivity and availability to the individual needs of
trainees who are intellectually challenged and/or emotionally affected by the content
of the training; (6) basic communication skills and the specialized group facilitation
skills required to lead discussions, raise appropriate questions, involve participants by
establishing an atmosphere of trust and respect, and handle group dynamics when highly
emotional or controversial topics are discussed; (7) the skill to help individuals with death-
related problems and the ability to guide them to professional helpers should the need
arise; and (8) responsibility and integrity, including the courage to admit when there are
no clear answers or when one is ignorant (Stillion, as quoted in Bordewich, 1988; Crase,
1989; Wass, 1995; Papadatou, 1997). This author believes that I don’t know are, in some
cases, the three most important words to be able to say to students.
While the number of opportunities for continuing education/distance education

about death and grief has greatly increased, the limited availability of adequate death
education opportunities among the initial curriculum offerings of teachers and health
professionals while earning their original degree remains a concern. Wass (1995) noted
the need for systematic training and screening of death educators at all levels, but
expressed concern that there is no mechanism in place to stop the individuals who enter
the field (most often at the continuing education level) possessing none of the requisite
knowledge, skills, and characteristics. Theoretically, anyone can teach a workshop
or course to a group of unsuspecting adults as long as the participants don’t ask for
educational credits or want proof of the instructor’s credentials (Wass, 1995). Therefore,
settings offering death education opportunities have a responsibility to the students/
participants to make sure that the educator is experienced and competent. Brabant and
Kalich (2008-2009) “encourage further discussion on both the ethical considerations in
teaching death education at the college level as well as the development of practical
guidelines and training prerequisites for those who teach these courses” (p. 16).
What Content Should be Included?
Gibson, Roberts, and Buttery (1982) noted that one of the goals of death education is
“to assist individuals in the process of clarifying values related to social and ethical issues”
(p. 17). The list of value-laden issues published in the early 80s is still relevant in the
21st century: euthanasia, abortion, capital punishment, and prolonging life by artificial
or extraordinary means. In 1982, the following value-laden question was significant:
Am I doing things that may cause me or others to die unnecessarily and prematurely?
(p. 17). At the present time, this statement would need to be modified: Am I being exposed
to things that are out of my control that might cause me or others to die unnecessarily
and prematurely? If one lives in an urban area, the news often includes descriptions of
children and youth who were killed by stray bullets or murdered by a parent or abuser.
Do we as a society have an obligation to provide these murdered victims’ siblings and
friends with information and resources for coping with these tragic deaths and the fear
that these tragedies might instill?
Three current textbooks commonly used in death education courses note in some
manner a variety of value-laden issues such as suicide; euthanasia; abortion; capital
punishment; quandaries posed by modern medicine and its complex technologies at the
end of life as well as throughout the life span (reproductive technology, assistive technology
during times of physical trauma); and other societal and global issues such as terrorism,
disasters, nuclear warfare, epidemics, famine, malnutrition, genocide, and dislocation of
populations (Corr & Corr, 2013; DeSpelder & Strickland, 2011; Kastenbaum, 2012). The
appropriateness of including these topics in the curricula of students at various levels
of education must be carefully considered. It is crucial to develop strategies to monitor
the well-being and safety of students and guarantee access to appropriate resources for
assistance should suicidal ideation or other types of psychological distress be experienced
by participants in death education.
Regardless of the topics being included, the material must be current, accurate,
and based on sound empirical research when the content merits a scientific focus.
Death educators have an ethical obligation to stay current on new developments, even
though this can be a daunting and time-consuming challenge. Dennett (1998) states:
“Information technology has multiplied our opportunities to know, and our traditional
ethical doctrines overwhelm us by turning these opportunities to know into newfound
obligations to know” (p. 87).
How Should Death Education Opportunities be Delivered?
Ethical issues can also arise based on how death education opportunities are delivered
and how the content is taught. While a review of the literature exploring the connection
between death education and death anxiety is beyond the scope of this chapter, it must
be noted that participation in a death education opportunity may result in increased
anxiety about thanatology-related issues. Literature describing the impact of experiential
learning vs. didactic teaching methods raises an interesting issue for debate: Is it ethical
to use pedagogical strategies that increase anxiety about thanatology-related topics? The
answer to this question seems to depend upon whether the participants are capable of
managing the resultant anxiety, if resources are available to help participants deal with
any negative consequences (Leviton, 1977), or if the educator can skillfully process role
plays without turning a class discussion into a therapy session (Barton & Crowder, 1975).
In her pioneering work with computer-assisted resources for death education,
Lambrecht (1991) provided death educators with innovative resources. The changing
face of educational technology, particularly the prevalence of online opportunities for
death education, is creating new ethical issues. A wide range of courses for students,
professionals, or consumers is offered by colleges, universities, and Web-based training
companies. In his discussion of social and ethical concerns regarding online learning and
teaching, Brey (2006) asks a question that can be applied to online death education: Can
social and cultural values be successfully transmitted in computer-mediated education?
While it is wonderful to see death education becoming so accessible, this and numerous
questions need to be asked and examined through sound empirical research.
Now that online teaching is proliferating, how does a death educator prepare to offer
a death education opportunity online? What competencies are required to successfully
implement death education opportunities that use educational technology? Death
educators are encouraged to consult the growing body of literature about e-learning
and web-based pedagogy for guidance (e.g., Cole, 2001; Salmon, 2003; Cupit, Sofka,
& Gilbert, 2012). Continuing education opportunities about e-learning and web-based
pedagogical workshops should be included at thanatology conferences and should be
available online. Death educators can gain insight about online learning and distinguish
between effective and ineffective strategies for Web-based teaching by participating in
an online course.
One must carefully consider how existing online resources are used in death education
efforts since there is no guarantee that information on a Web-based resource is accurate
or reliable, and instructors have a responsibility to make sure that content utilized in death
education courses meets these criteria. Consumers of online information need to become
educated consumers of electronic resources (Lozano-Nieto, Guijarro, & Berjano, 2006),
and students should be provided with resources to help them gain information literacy
skills (e.g., Sofka, 2012b).
There are also significant differences between classroom dynamics and the dynamics
of interactions in a virtual classroom. How does the absence of face-to-face interactions
(between the instructor and students as well as between fellow students) influence the
experiences of the students as well as the desired educational outcomes? Drawing on
this author’s experiences, the absence of nonverbal cues in a virtual classroom provides
a simple but powerful illustration. In death education courses, it is not uncommon for
students to disclose personal experiences, an act that involves some degree of emotional
risk taking. Moderators are responsible for creating and maintaining a safe environment
in which this type of disclosure can take place (Gorman, 2012; Salmon, 2000).
How does a moderator create and maintain this safety in a virtual classroom, where
it is not possible to gauge the immediate reactions of classmates to the information that
has been shared? Misperceptions can and will take place in online discussions, particularly
during conversations that are asynchronous (e.g., do not occur in real time). Moderators
must carefully monitor all postings for content that could be misinterpreted or content
that may startle, shock, or upset other students in the class. While it is important to try
to anticipate issues or situations that may create discomfort for the author of a posting
or among fellow students when they read a posting, it is impossible to predict them all.
Another situation that can prove to be awkward is the inevitable posting to which
few students (or no students) respond. The moderator has the ultimate responsibility to
make sure that at least he or she posts a response and that efforts to facilitate discussion
are consistently made in a timely manner. Gorman (2012) provides a comprehensive
discussion of strategies to create a safe space for student learning in online death
education offerings.
Cultural and ethical issues can arise during distance education efforts when international
students are enrolled in the course (Anderson & Simpson, 2007). Language barriers may
impact the degree of active participation of a student expected to communicate using a
second language. Do the participation grades of students for whom English is not their
native language suffer as a result of cultural differences in teaching and learning? It is
important to make sure that international students are not unfairly penalized for being a
stranger in a strange online land.
Ethical issues can also relate to the timeframe and timing of a death education
offering. For traditional courses, it is important to schedule the course in a time slot that
provides access to the instructor in a timely manner after the class ends. Opportunities
for follow-up once the course is completed may also need to be considered. Time-limited
death education opportunities, such as brief workshops or those provided via distance
education, may present special challenges. If an instructor does not live nearby, have
arrangements for contact via phone or e-mail been made? Who does the follow-up
if a student experiences difficulties after a workshop or course is completed? Has the
instructor made arrangements with local resources to be available? Is each distance-
education student aware of local resources that can assist should the need arise? Dunn
(2005) notes professional and ethical considerations and challenges related to the
provision of counseling services to distance students. Administrators responsible for the
scheduling and oversight of these courses and workshops must be aware of these special
considerations.
How Are Outcomes Evaluated?
The evaluation of death education efforts has always presented challenges to death
educators. Scholarly literature provides guidance with this task (Durlak, 1978-79; Durlak
& Reisenberg, 1991; Papadatou, 1997), including guidelines for ethical issues related
to thanatology research (Cook, 1995; Cupit, 2012). Research about the impact and
effectiveness of death education must be conducted, particularly for courses involving
students who have personal experience with loss (Balk, 1995). Alternative educational
programs such as large-scale symposiums involving a variety of events and media coverage
are generally not evaluated (Waldman & Davidshofer, 1983-84). Longitudinal outcome
studies must also be considered since a significant limitation involves the absence of
information about the long-term impact of death education on participants’ professional
roles (Durlak, 1978-79).
In recent years, death education through the use of “thanatechnology” (Sofka, 1997)
such as distance education initiatives and continuing education via webinars, podcasts,
and training DVDs has proliferated. However, the impact of the use of these strategies
for death education is largely undocumented. As a result of the changes in the way that
death education is being delivered, one must consider the possibility that the outcomes
of the educational process may also change. Is online death education effective? Are
continuing education and distance education strategies that rely on independent study
methods and the use of new technologies resulting in the acquisition of the required
professional knowledge and skill-based competencies?
The evaluation of death education efforts that utilize thanatechnology presents
multiple challenges (Cupit, Sofka, & Gilbert, 2012). Death educators need to consider
how to best evaluate their courses and these new educational tools using valid and
reliable measurement strategies (e.g., Mehrotra & McGahey, 2012; Vai & Sosulski,
2011). It is also crucial for death educators to work collaboratively on empirical tools and
share results as quickly as possible to facilitate the comparison of outcomes. Web-based
resources provide opportunities for expedient dissemination of information, provided
that the intellectual property rights that guide online publications are respected.
Death educators must also consider the following questions: How does an instructor
evaluate skill-based competencies when the student has not been involved in face-to-
face opportunities for direct observation and assessment? In addition to the ethical issues
of academic integrity and honesty when written work and exams are submitted online,
do written responses on an exam accurately reflect one’s ability to effectively apply
knowledge and skills in a real-world situation?
Death educators have an obligation to consider these issues and to conduct research
that will either confirm that the use of technology does not compromise the desired
educational outcomes or challenge death educators to consider whether online education
is an appropriate method to gain skill-based competencies. The use of both online and
traditional strategies may be required. Research comparing perceptions of the quality of
online and traditional learning and the reasons why students prefer one type of learning
environment over the other suggests that there is reason for offering more hybrid courses,
that is, courses combining face-to-face and Internet interaction (Hannay & Newvine,
2006). Regan and Youn (2008) note that the rapid developments in technology that
is used to teach clinical skills through Web-based learning environments “be tempered
with careful planning, evaluation, and research concerning the most effective and ethical
methods for delivering this type of education” (p. 111). Ethical issues regarding the
education and training of clinicians who provide services via an online environment to
individuals dealing with issues of dying, death, and grief also demand increased focus
by death educators and mental health professionals (Gamino, 2012; Sofka, Dennison, &
Gamino, 2012).
Full discussion of the multiple factors that have an impact on death education is
beyond the scope of this chapter. For additional information about the impact of culture,
socialization, religion/spirituality, life span issues, and the family and larger systems on
death education, consult chapters 34-38 in this handbook.
Legal Issues
The distinction between ethical and legal issues related to death education appears to
be a subtle one. The remainder of this chapter will focus on the following legal issues
regarding death education: intellectual property rights and copyright issues, liability issues
related to a negative outcome resulting from a death education opportunity, and the
certification of death educators.
Intellectual property rights and copyright issues are relevant to all educators. The
American Association of University Professors (AAUP) notes that these already complex
issues have been further complicated by the significant growth of distance education
(AAUP, 2012). Death educators have a responsibility to be familiar with not only the laws
that govern these issues but also the policies and procedures governing these issues at
his or her host institution. Useful summaries of matters to address in distance education
policy and contract language are available from the AAUP website at http://www.aaup.
org/AAUP/issues/DE/. Faculty are advised to clarify with administrators whether a faculty
member retains copyright ownership of works that are created or if those works become
the property of the institution and to get any agreements about ownership in writing. The
development and use of new technologies always leads to uncertainty about these issues,
so a wise educator with an institutional affiliation should take note of these suggestions
in a proactive manner (AAUP, 2012).
Death educators must also be mindful of intellectual property rights in relation
to preexisting materials that are utilized in death education courses. Death educators
who taught before the advent of Blackboard, WebCT, and other online course support
resources will recall that concerns about a visit from the “copyright police” could be
avoided by honoring fair use policies through library reserve or preparing readings
packets after securing permissions through one’s institution or the staff at the local copy
shop. Resources are available to help educators learn about copyright law as it relates
to print, video, music, websites, and other expressive content that can liven up in-class
and online teaching (e.g., Blanke, 2002; Starr, 2010; U.S. Copyright Office, 2009). Being
vigilant about citing sources on course materials, PowerPoint slides, or any materials
disseminated to students not only keeps you in good standing with the “copyright police”
but demonstrates academic integrity and provides good role modeling for students.
In our litigious society, it is possible for death educators and the institutions in which
death education occurs to be held accountable for a negative outcome that could be
connected with involvement in a death education opportunity (e.g., an attempted or
completed suicide after participating in a suicide prevention program; exacerbated
symptoms of mental illness—depression, anxiety, post-traumatic stress—following
involvement in a death education opportunity). It is important to possess the requisite
knowledge and skills, ensure parental involvement of minors in the planning process, and
identify strategies for being aware of the loss histories of participants in death education
opportunities (which can be particularly challenging for community-based workshops
or professional trainings). At a minimum, reactions to the content and process of the
death education experience should be monitored. Prior to the start of a death education
opportunity, mechanisms for follow-up or a process for referrals to resources for support
that participants may need following completion of the death education opportunity
should be in place and should be communicated clearly to participants. Evaluation of all
death education efforts should occur to assess the effectiveness of the death education
opportunity and to assist in identifying potentially problematic situations. Legal counsel
should be involved in the review of informed consent documents that describe potential
risks/potential for harm and in the creation of any relevant disclaimers. Creating a
process to document the accountability of death educators has occurred in the form of
certification efforts for over 20 years.
Wass (2004) noted the topic of teacher competence as particularly relevant
to discussions of legal issues and death education. Do death educators have the
knowledge and skills required to facilitate death education efforts that are effective?
Do they understand basic group dynamics, and are they able to create psychologically
safe environments within the classroom? Is there a need to develop competencies for
death educators in general or within various disciplines involved in death education?
There is also a need to obtain data on death educators regarding their preparation, their
competencies, continuing education that has been completed throughout their careers,
and to whom they are accountable.
One strategy for assessing the competencies of death educators is the process of
certification (Zinner, 1992). Thanatology-related certification has become available from
a variety of sources (e.g., a Certification in Thanatology or Fellow in Thanatology from the
Association for Death Education and Counseling, various certificates from the American
Institute of Health Care Professionals/the American Academy of Grief Counseling, the
National Center for Death Education, the American Grief Academy, Marian University,
Maria College, and King’s University College). Several institutions of higher education
have created degree programs in thanatology (e.g., King’s University College and
Hood College) or concentrations in thanatology within other degree programs (e.g.,
Brooklyn College and Marian University). However, many of these options represent the
completion of educational training designed to enhance knowledge and/or to indicate
competence in the provision of services or support to those in crisis, the dying, or
bereaved. Certificates allow individuals to label themselves as being certified in relation
to a particular knowledge base, competency, or skill area, but are not equivalent to being
licensed with the affiliated legal powers and liabilities. In addition, certification processes
may not adequately evaluate the pedagogical skills of death educators. How do death
educators gain pedagogical skills? What is the best way to assess the competencies and
effectiveness of death educators once they are certified? These questions merit ongoing
attention.
Conclusion
Implementing effective opportunities for death education that adequately and respectfully
address the ethical and legal issues outlined in this chapter is a task that would present
challenges for even the most experienced death educators and the organizations in which
death education opportunities are delivered. Wass (1995), a respected death educator
and scholar, stated: “I have tried for the past fourteen years to become a good death
educator. I am still trying” (p. 334). May we all, with humility and grace, accept the
fact that the knowledge base for thanatology is constantly growing and willingly adopt
Wass’s philosophy of lifelong learning as we strive to become the best death educators
that we can be.
393
Three Overarching Indicators

Within Fundamental Knowledge of
Thanatology
Chapters 40 – 42
Chapters 40 through 42 focus on three overarching indicators:

professional issues, resources, and the Internet. The Body of
Knowledge Committee defined professional issues in this way: factors
that affect professionals’ training, abilities, and responsibilities
in providing care. Resources involve materials, organizations, and
groups of individuals that facilitate knowledge acquisition. Ideas
and materials are based upon the findings of empirical research
and theoretical synthesis that add to the knowledge base. The Body
of Knowledge has yet to address the influence and function of the
Internet.
The authors of these three chapters have synthesized information

sources that cut across the six major categories of dying, end-of-
life decision making, loss, grief, and mourning, assessment and
intervention, traumatic death, and death education. Chapters 40 and
41 are revised from the contributions that appeared in the first edition
of the handbook. Chapter 42 is wholly new and reflects the growing
awareness of the pervasive influence and power of the Internet in
matters thanatological.
395
Chapter 40
Professional Issues and Thanatology

Carol Wogrin
The field of thanatology has changed dramatically over the past few decades. Medical
advances that enable us to keep people alive in the face of life-threatening illnesses
create a vast array of challenges and responsibilities for the professionals providing
care. Models of care for the dying have developed significantly since the start of the
modern day hospice movement with the establishment of St. Christopher’s Hospice by
Cicely Saunders England in 1967, as discussed in detail in chapters 3 and 5. Efforts to
provide palliative care in countries across the globe have steadily increased, particularly
over the past couple decades. Development of the theoretical understanding of the grief
process, as described in chapters 16 and 23 brought about a fundamental paradigm shift
that consequently altered clinical practice. Such rapid change in the field over such a
relatively short time span places significant responsibility on the caregiver to keep his or
her knowledge base up to date, including general knowledge of the field of thanatology
and the body of knowledge specific to his or her own discipline and area of practice with
in the field.
When providing end-of-life and bereavement care, professional caregivers need to
possess in-depth knowledge, experience, and skills in order to be able to attend to a
wide variety of specific and often complicated circumstances (International Work Group
on Death, Dying, and Bereavement, 2006). While the volume of information has grown
significantly, as has the knowledge base in many areas, the foundational skills required
in order to provide optimal care to the dying and the bereaved remains the same. In
a report by the Institute of Medicine (Field & Cassel, 1997), the authors identify the
requirements of professionals who provide care at the end of life. These requirements
include strong interpersonal skills, along with clinical knowledge and technical proficiency
that is informed by scientific evidence, values, and personal and professional experience.
This report stresses the responsibility that health care professionals have for educating
themselves and the larger community regarding good care for the dying and their families.
Areas identified that are important to professional preparation across disciplines include
the following.
Interpersonal skills and attitudes, including:
• listening to patients, families, and other members of the health care team
• conveying difficult news
• understanding and managing patient and family responses to illness
• providing information and guidance on prognosis and options
• sharing decision making and resolving conflicts
• recognizing and understanding one’s own feelings and anxieties about dying
and death
• cultivating empathy
• developing sensitivity to religious, ethnic, and other differences
Ethical and professional principles, including:

• doing good and avoiding harm
• determining and respecting patient and family preferences
• being alert to personal and organizational conflicts of interests
• understanding societal/population interests and resources
• weighing competing objectives or principles
• acting as a role model of clinical proficiency, integrity, and compassion
Organizational skills, including:

• developing and sustaining effective professional teamwork
• understanding relevant rules and procedures set by health plans, hospitals, and
others
• learning how to protect patients from harmful rules and procedures
• assessing and managing care options, settings, and transitions
• mobilizing supportive resources (e.g., palliative care consultants, community-
based assistance)
• making effective use of existing financial resources and cultivating new funding
sources
It is critical that clinicians stay current in their knowledge base in the rapidly growing
field of thanatology. As models of care for the dying have evolved over the past few
decades, so too has the field’s understanding of the grief process and needs of the bereaved.
Chapter 16 discusses the shift in the theoretical framework from understanding grief as
a process oriented toward disconnecting from the deceased to one that recognizes the
importance of continuing bonds with the deceased. This shift in thinking subsequently
alters the ways in which we approach intervention with the bereaved. We are only
beginning to understand the ways in which the professional community can support the
bereaved, including identifying who benefits from what kind of intervention as discussed
in chapter 23. To date there are as many questions as there are answers.
Professional Issues and Thanatology 397
While important, keeping up to date on current understanding and empirically based

recommendations for practice can be very challenging to do. There presently exists a
significant gap between research and clinical practice (Bridging Work Group, 2005;
Devilly, Gist, & Cotton, 2006). Many practitioners regard much of the available research
as holding little relevance for their work. Likewise, many researchers believe that clinical
practice has little to contribute to the scientific study of bereavement (Bridging Work
Group, 2005). Given the expanding field, including issues such as the evolving empirical
evidence that challenges assumptions about effective strategies for caring for the
bereaved, as discussed in chapter 23, this gap is particularly problematic. In recent years,
efforts to address this gap are increasing. One such example is work by Neimeyer, Harris,
Winokuer, and Thornton (2011). The chapters of their book Grief and Bereavement in
Contemporary Society: Bridging Research and Practice pair researchers and clinicians,
with the specific intent of bringing the research and clinical domains closer together.
Of note, though, Neimeyer and Harris (2011) report that the attempt to do so was not
entirely smooth or without its challenges, with doubt being expressed by professionals on
both sides of the dialogue regarding such efforts.
An example of an area where both practice and research have been developing
along somewhat parallel and nonintersecting tracks is that of community crisis response
to traumatic death. Hospices and bereavement professionals are often called to support
organizations and larger communities when traumatic deaths occur. The bereavement
needs of people in the immediate aftermath of public tragedy have aspects that are unique
to this sort of event. Those who will respond to these requests have a responsibility to have
appropriate training in crisis response as well as the knowledge and experience to adapt
the intervention to the type of trauma being addressed (Homan, 2005). Training in crisis
response can be obtained from several different organizations including the International
Critical Incident Stress Foundation (www.icisf.org), the American Red Cross (www.redcross.
org), and the National Organization for Victims Assistance (www.nova.org) (Homan, 2005).
However, there is a gap between clinical practices and the growing body of empirical
data that challenge the beliefs and assumptions surrounding the intervention strategies.
Devilly, Gist, and Cotton (2006) examined the literature involving psychological
debriefing. They identify significant disagreement between clinicians who employ models
of crisis management and the research data regarding the effectiveness of these models.
They conclude that while the serious literature of psychology and related disciplines has
increasing evidence that brings into question the effectiveness of traditional debriefing
practices, information flowing to consumers about debriefing has been almost solely in
the domain and control of intervention proponents. As a result, there are conflicting
bodies of information, one presenting objective, refereed, independent assessments of
measured efficacy, and another, which is dominated by a social movement attempting to
argue those accumulating data away. The fact that the discrepancy is intensifying over
time is a troubling indicator of a schism between research and practice, with academic
psychologists becoming detached from the realities of application and practice, and many
practitioners becoming progressively more estranged from the empirical underpinnings of
their discipline (Devilly, Gist, & Cotton, 2006).
Crisis response in communities is merely one example of the prevalent gap
between research and practice in the field of thanatology. In the time to come, it is the
responsibility of both researchers and practitioners to close this gap. Efforts will need
to include recognition of how much each group has to learn from the other, as well as
the development of collaborative models for sharing information, increasing theoretical
understanding, and investigating the effectiveness of various interventions (Bridging
Work Group, 2005).
In addition to maintaining an up-to-date knowledge base, good communication skills
are fundamental to the role and responsibility of the professional caregiver. These skills
include the ability to use active listening and empathic understanding of an individual’s
internal and social world (International Work Group on Death, Dying, and Bereavement,
2006). In order to communicate effectively and responsibly, as discussed in chapter 7,
the caregiver must have a solid understanding of and pay close attention to issues of
culture. Culture informs a person’s beliefs and values surrounding illness and death, the
experience of pain, beliefs about sharing information about dying, the interpretation of
the ethical imperative for truth telling, and practices around care and disposal of the body
(Koenig and Gates-Williams, 1995). It is extremely important that professionals working
with death and grief have an awareness of the influence of culture on their own beliefs,
values, and biases as well as maintaining an awareness of cultural beliefs and values in the
people to whom they are providing care. As medical advances result in increasingly more
options for treatment, and therefore choices to be made, it is important for caregivers to
have an understanding of the interplay between culture and the ethics of caring when
working with the dying, their families, and the bereaved.
Practitioners working in the field of thanatology also have responsibility to develop
expertise in understanding the dynamics of the caregiver/client relationship. Throughout
the remainder of this chapter, the term caregiver is used exclusively to refer to professional
caregivers.
Working with the dying and bereaved is not something that people do simply because
they can’t find another job or because it’s an easy way to keep a roof over their head
and food on the table. Rather, people elect to work in the field for a variety of personal
and professional reasons, but generally central to the choice is the belief that the work is
meaningful and the experience of the work being rewarding. Professionals who work in
the field know what a gift it is for people to allow them into their worlds at such difficult
and important times, allowing caregivers to share in some of the most meaningful and
intimate moments of their lives. Every day, professional caregivers to the dying and the
bereaved are reminded of the transient nature of life, and consequently the importance
of appreciating and making use of the life we have while we have it. However, with
the rewards come some significant challenges and responsibilities. Caregivers have a
responsibility to their patients, clients, and to themselves to understand and attend to the
dynamics of the caregiving relationship and the impact this relationship has on the patient
as well as on him- or herself. While many professional issues for caregivers are common
to most service professions, some issues take on particular importance when working
with matters surrounding death, and others are unique to the field of thanatology. The
remainder of this chapter will explore the concepts involved and their application to
practice.
The challenge to the professional is to be aware of a number of factors that comprise
a therapeutic relationship. These factors include the inherent power and authority of the
caregiver; the vulnerability of the client; the opportunity to help; the potential to harm;
the feelings, behavior, and perceptions of the client; the professional’s own feelings and
behavior; and the impact these can have on the client (Sheets, 1999). Daily, thousands
of nurses, social workers, psychologists, physicians, counselors, clergy, nursing assistants,
physical therapists, volunteers, and many others provide care to those who are suffering
and in need. These professionals must negotiate a delicate interplay between the needs
and expectations of the patients with their own unspoken needs and expectations
(Arbore, Katz, & Johnson. 2006).
An understanding of the therapeutic relationship relies, in part, on the professional
caregiver having an understanding of self and what he or she brings to the relationship.
When working with death and grief, it is important that the professional be aware of
his or her own relationship to death and personal values and belief system about death,
grief and mourning. Personal experience of death and significant loss will influence such
awareness, values, and beliefs. It is helpful to spend some time thinking about one’s own
experiences. Professionals should ask themselves the following questions.
• What are the significant losses that I’ve experienced?
• How did I react and how did those around me react?
• What have I learned about death and grief from my experiences?
• What are my religious and/or spiritual beliefs about death?
• What are my cultural beliefs and assumptions about the expressions of grief,
e.g., that it is respectful and “strong” to stay contained and keep a stiff upper
lip or that it is respectful to the deceased and healthy to emote intense emotion?
• Based on my experiences, what do I believe and what assumptions do I make
about what people need from others as they cope with grief and loss?
When working with issues surrounding death, the professional caregiver is working
with people during some of the most emotionally charged and vulnerable times in their
lives. In order to offer the kind of support, understanding, and empathy that is needed
when someone is dying or coping with the death of a loved one, a professional needs
to be emotionally open and willing to get very close to intense and difficult emotions.
Because death and grief are universal, caregivers likely have experienced the death of
people they love and/or have had other significant losses, as well as knowing they will
face the death of people they love. They could easily find themselves in the position of
the person they are working with. The personal feelings of the professional may easily be
tapped into when coming up against the feelings of the other person. Tapping into one’s
own feelings can serve as the basis for empathy, but can also run the risk of confusing
one’s own feelings with those of the client. Because of this possibility, it is imperative that
caregivers work diligently to be aware of their own feelings so that they don’t confuse
their own needs with those of the client or patient.
Being aware of one’s own feelings can help caregivers make appropriate and
responsible choices in interactions with clients. Personal feelings of the caregiver, referred
to as countertransference in the mental health fields, may manifest in many ways,
including feelings of nervousness, anxiety, or anger, and can help a person connect with
those who suffer. By viewing countertransference as a tool for understanding the patient,
the dynamic in the relationship and oneself, rather than as an obstacle, a professional can
become a better helper to those for whom he or she provides care (Arbore et al., 2006).
However, at times it can be very difficult to remain truly present with a person who is
suffering or in intense levels of emotional pain. In an attempt to feel emotionally safe, or
cope with their own feelings of helplessness, helpers may retreat from the pain of their
clients, by becoming “professional” or objective. This manner of coping often manifests
as distancing or aloofness. By remembering that simply our presence and caring can
be a healing experience for our patients, we can often sustain ourselves during those
emotionally challenging situations (Arbore, et al., 2006).
It is helpful to those in the caring professions to recognize countertransference
responses to suffering. Abore et al. (2006) offers a list of responses that are common but
unhelpful.
• Helplessness (Caregivers may distance themselves by becoming over or under-
involved.)
• Shame and embarrassment (Caregivers may look the other way and not see the
suffering.)
• Denial and the wish for it to go away (Helpers may convince themselves that
talking about it, seeing it, will contribute to or increase the pain or suffering.)
• Anger and hostility (If unaware of their own anger at the disease or the inability
to change things, helpers can displace anger into the helping situation.)
• Sorrow (Deep sorrow can make it hard for the helper to maintain a connection
because of being too involved in one’s own suffering.)
• Restlessness (Caregivers may impose their own agenda, letting it take precedence
over the needs of the client.)
Professional Boundaries
In addition to understanding one’s own experiences, feelings, and other reactions, a
professional caregiver must develop an understanding of the dynamics of a professional-
client/patient relationship. First and foremost is the importance of understanding the

concept of professional boundaries. The concept of boundaries is an important one to
anyone in any kind of professional caregiving situation or position, but never more so than
when working with death and grief. Boundaries can be defined simply as the margins of
appropriate behavior (Gutheil & Gabbard, 1998) or as the lines we draw to help us define
our roles and interactions in relationships (Leurquin-Hallett, 1999). The establishment
of clear boundaries is designed to create an atmosphere of safety and predictability and
allow for a therapeutic connection between the practitioner and the client (Gutheil &
Gabbard, 1998; Sheets, 1999). These boundaries can be expressed in physical, social, or
psychological terms (Martsolf, 2002).
Ethical guidelines for practice help establish the line around appropriate behavior
that one should not step over. Where this line is drawn is defined by many different
factors, including the discipline within which a person practices, the setting a person
practices in, e.g. a facility versus home care, or city versus a small rural area, as well as
one’s culture. It is the responsibility of the professional to establish the boundaries at
the outset of the relationship and maintain them for the duration of the relationship.
The rules for appropriate behavior usually include guidelines for contact, including how
much, how often, and method; types of information to be shared; physical closeness;
and the setting in which the interactions may occur (Martsolf, 2002). There is an inherent
power dynamic in caregiving relationships that makes issues of ethical practice and
clear boundaries particularly important. Simon (1995a) offers five principles regarding
the establishment of boundaries. First is the rule of abstinence—a professional must
abstain from personal gratification at the client’s expense. This principle is the foundation
on which the other principles rest. Working with the dying and the bereaved is often
personally gratifying to the professional as he or she is in the role of offering support
at a time when it is needed acutely and in a position of helping diminish or alleviate
suffering. However, in keeping with this principle, any gratification for the caregiver
should come from accurately understanding and then appropriately meeting the needs
of another person. It is imperative that the action and communication always be oriented
toward the client’s needs, and that the client is never asked, in any way, to attend to
the emotional needs of the professional caregiver. Second is the duty to neutrality—
not to interfere in a client’s personal relationships. When working with the dying, in
hospice or other settings, caregivers may work with people over long periods of time
and frequently in times of crisis or other emotionally demanding times. While crisis can
bring people closer together, it can also exacerbate the differences in coping styles or
perhaps longstanding conflicts in families. When caregivers offer a listening ear and the
therapeutic relationship grows it can be seductive for the caregiver to be in the position
of the “chosen one,” the confidant, the one who understands. While it is important to
offer a listening ear and emotional support, the caregiver must also keep an eye to not
encouraging the patient to lean on him or her as a way to avoid working things out
between family members, stepping into a position that should be occupied by available
family members or other social supports, or in taking sides in family conflicts. Adherence
to the first principle helps in maintaining the second. Third is the promotion of client
autonomy and self-determination. It is important for the professional to recognize and
support a patient’s strength and competence, regardless of his or her physical decline
from illness and the consequent losses, and not encourage dependence because it makes
the caregiver feel important. Fourth is the fiduciary relationship, the contract with the
client that the professional will serve to protect. There is a contract between the patient
and caregivers that mandates the professional to uphold recognized standards of care.
Also, the fact that the client/patient is paying for services, directly or through his or
her insurance, helps create a power dynamic in the caregiving relationship. Payment for
services means that there is a skill or expertise that the relationship is oriented around.
Those who provide the expertise are in the position of power and authority, and that
position must be treated with care and respect. Fifth is the respect for human dignity. In
order to respect the human dignity of a person who is dying or bereaved, professionals
must do their best to understand a client’s cultural view, his or her values and belief
system, and base interactions on this understanding.
Whether due to blatant disregard for ethical principles on the part of the caregiver,
carelessness, or lack of understanding, inevitably there will, at times, be problems with
maintaining professional boundaries. Boundary transgressions can be understood in two
important ways: as boundary crossing and boundary violations (Gutheil & Gabbard, 1998;
Sheets, 1999). Boundary crossings are “brief excursions across boundaries that are often
inadvertent or thoughtless” (Sheets, 1999, p. 657). When recognized, the boundary
crossing must be pulled back from and the implications and consequences evaluated
(Sheets, 1999, 2000). Boundary violations occur when there is confusion between the
needs of the professional and the needs of the client. These violations can be in the form
of excessive personal disclosure on the part of the professional, reversal of roles, accepting
personal favors, or sexual misconduct. Boundary violations make up the highest number
of complaints to the Ethics Committee of the American Psychological Associaton (Knapp
& Slattery, 2004). Boundary violations and boundary crossings may not be recognized
by the client or the professional until the development of harmful consequences (Sheets,
1999). Most practitioners understand the more obvious and clear boundary violations,
such as engaging in sexual relations with a client. However, there are other more subtle
boundary violations and crossings that are not always as clear, such as sharing personal
information that shifts the focus from the needs of the client to the needs of the caregiver,
or visiting clients outside of work hours. With these violations it is more common or easier
for practitioners to justify their actions as being in the interest of the client.
One of the important methods that help maintain clear boundaries is to have clearly
spelled out goals for care and a plan for the achievement of those goals. When the
delivery of care stays directed toward the goals and care plan, boundary violations are less
likely to occur (Martsolf, 2002). For example, when professionals are working for hospice
as a member of an interdisciplinary team, focusing on the benefits and strength of a team
and the role the different team members have in meeting the physical, emotional, and
spiritual goals of care will help avoid the risk of one person slipping into a special position
and functioning as if only he or she can meet the needs of an individual or family.
There are a number of reasons to guard against boundary crossings, some of which
may be less obvious and others are easier to justify as being in the best interest of the
client. When working with people with life-threatening illnesses, professional relationships
can get very close. Long-term illnesses and the treatment protocols for many conditions,
whether in a clinic, hospital, nursing home, inpatient hospice, or home care, result in
professionals and patients spending a lot of time together over long periods of time.
As the relationships develop and difficult, as well as pleasurable, life experiences are
shared, familiarity and potentially deep connections develop. Unlike in social friendships,
however, in a close professional-patient relationship there should not be a reciprocity that
includes the sharing of the professional’s concerns and problems, which would burden
the patient (Peteet, Ross, Medeiros, Walsh-Burke, & Rieker, 1992). Over involvement can
also result in decreased objectivity in decision making and in adequately keeping one’s
own feelings in check (Docherty, Miles, & Brandon, 2007). Another problem inherent in
shifting to the role of that of a friend can lead to making promises you can’t keep (Taylor,
1998). For example, if boundaries are crossed and a friendship develops in a relationship
with someone who is ill and receiving treatment that will end, or with a family member of
a terminally ill person, the implication or expectation is that the friendship will continue
after the professional role ends. However, the work demands on the caregiver continue,
new patients will need attention, and the caregiver may find himself or herself less
inclined to make the time for an ongoing relationship. Or, the patient who is used to the
relationship revolving around their needs may feel burdened, betrayed, or violated when
the professional begins to expect the reciprocity of support for his or her own problems
that is typical of a friendship.
Often times, professionals who cross the appropriate boundary and enter into a social
relationship rationalize their choice, maintaining that the situation is unique and that, for
one reason or another, it is in the best interest of the client/patient, or what the client
wants. However, these relationships tend to be exploitive; they cross the boundaries
of ethical practice, serve the needs of the practitioner, and impair his or her judgment.
The practitioner’s power and client’s vulnerability carry over from the professional to the
personal relationship. When the shift occurs, a practitioner’s power remains but is no
longer checked by professional rules of conduct (Kagle & Giebelhausen, 1994).
An important issue in a caregiving relationship that is often very challenging for
professionals is that of self-disclosure. In end-of-life care, where relationships may
be long-term, very close in nature, and often take place in homes, there may be an
inclination on the part of the caregiver to share details of his or her own life as part of
sharing himself or herself in his or her work. The problem with self-disclosure, regardless
of how insignificant it seems or whether it is information specifically requested by the
patient, is that it shifts the attention from the patient to the caregiver, and in the long run,
does not serve the patient.
With the changes in the health care delivery system over the past couple decades,
health care is more often provided in community settings and homes, which increases the
possibility of blurring boundaries between patient and professional caregiver and between
professional and social activities (Martsolf, 2002). Knapp and Slattery (2004) identified
three specific concerns for professionals who deliver services in client’s homes. First is that
boundary crossings are more likely to occur when services are provided in homes rather
than institutions. Second is that the nature of home-based services provides a professional
with more opportunities to act out or step outside professional boundaries, and third is
that people working with clients in their homes are more likely to drift into a more social
relationship rather than maintaining a strictly defined professional one. Because of these
challenges, the importance of professional training and ongoing supervision can’t be
overestimated. That said, not all disciplines view supervision similarly, and it is not always
easy to get people to embrace the practice (Firth, 2011).
It is important to highlight that the type of community in which a person practices
warrants attention, as it has a bearing on the way in which a person must think about
boundaries. The theory and understanding of professional boundaries has, to some
degree, been developed with an eye to urban and more densely populated suburban
areas. The idea that a professional’s personal life can be kept completely separate from
professional-client relationships assumes a level of anonymity and control on the part of
the professional that does not exist in rural or geographically isolated areas. In rural areas
where the professional will see clients in the grocery story, attend the same church, have
children in the same class at school, and serve on the same community committees, the
practitioner has less control over what’s known about his or her own life (Helbok, Marinelli,
& Walls, 2006). In sparsely populated areas there is not the luxury of referring a client to
another professional whose personal life does not overlap with that of the client. In these
settings, the importance of addressing boundary issues with clients takes on a new form.
Informed consent is of importance in a new way, with the professional discussing with the
client the implications and limits of meeting in social settings and finding a way to keep
the professional relationship separate, establishing clearly with a client at the beginning of
the relationship the rules for in-office and out-of-office boundaries (Helbok et al., 2006).
Issues of confidentiality and dual relationships all need to be carefully addressed.
It is imperative that a professional always engage in conscious self-monitoring, to be
sure that he or she doesn’t inadvertently cross boundaries or fail to notice if he or she
begins shifting from giving good compassionate care based on the needs of a client, to
a relationship in which his or her own needs and personal gratification are moving to the
fore. There are red flags, or warning signs, in a caregiver’s behavior that are easy to spot
when paying attention (Sheets, 1999; Taylor, 1998). These include:
• excessive self-disclosure on the part of the professional caregiver, including

discussing personal problems or aspects of intimate life
• beliefs on the part of the professional that he or she is the only one who can
meet the client’s needs
• giving out a home phone number and encouraging patients to depend on him or
her instead of working with other members of the health care team
• repeated or lengthy calls to patients outside of working hours
• inviting patients or families to join him or her in activities outside work
• selective communications, where the professional reports selectively on a client’s
behavior, gives double messages, provides care with a level of secrecy
• buying gifts for or accepting gifts from patients or families
• lending money or personal belongings
• failure on the part of the professional to seek supervision when the professional
is aware of a risk or occurrence of a boundary crossing or violation
Risks Inherent in the Work
While the work of caring for the dying and the bereaved is very rewarding, there are ways
that working with this population is uniquely challenging and can have an impact on the
caregiver. Professionals must develop high levels of self-awareness and appreciation of
the stressors inherent in this work in order to avoid suffering from the various stressors.
Part of the risk inherent in the work has its basis in empathy. Empathy can be defined
as the therapist’s “ability and willingness to understand the client’s thoughts, feeling,
and struggles from the client’s point of view” (Rogers, 1980, p. 85). Offering support to
someone who is dying or coping with the death of a loved one requires a professional
to be willing to get very close to intense and difficult emotions and develop an empathic
understanding of an individual’s internal and social world (International Work Group on
Death, Dying, and Bereavement, 2006). Technological advancement over the past couple
decades has increased our understanding of the neurophysiological aspect of empathy
and shed new light on our understanding of why empathy can pose risks.
Drawing from work of researchers in the 1990s, Rothschild (2006) examines
explanations for what makes it possible to vicariously feel what another person is feeling.
An important finding was the identification through the use of brain scans of what are
now called mirror neurons. Brain scans revealed that, not only do specific portions of our
brains light up when we perform various activities or have certain emotional experiences,
these same portions light up when we observe someone carrying out an activity or
expressing emotion. In other words, on a neurological level we are wired to react as if an
observed experience of another were our own.
It is not surprising, then, that when engaged empathically with someone who has
experienced a trauma or perceived threat, we respond as if we were also being threatened.
The portion of our nervous system that regulates the fight or flight response will be
activated. We become hyper alert, with increased heart and respiration rate, elevated
blood pressure, and dilated pupils; blood is shifted to the skeletal muscles so they are
ready to react. When the threat is passed, another portion of the nervous system slows
everything down, including heart rate and respiration, and sends blood away from the
muscles and to the internal organs. However, when neither flight nor fight is possible, the
brain continues to sound the alarm, resulting in persistent symptoms of stimulation, and
hallmark symptoms of PTSD: hypervigilance, exaggerated startle response, and difficulty
falling or staying asleep.
The phenomenon of synchrony between people, including responses such as
synchronized heart rates between therapists and clients, as tension in sessions is raised
and lowered is well-documented (Rothschild, 2006). This nervous system synchronicity
is a central component to somatic empathy. The experience of being able to lower the
anxiety level of a client by slowing down one’s own breathing is a familiar experience
to many practicing clinicians (Rothschild, 2006). Anyone who has spent time listening
to the experiences of the bereaved, knows the traumatic quality to many of the stories.
Significant loss poses a threat to the attachment system, and hence, to one’s sense of
safety and security. Due to this threat, clients are likely to be in a state of arousal when
sharing their stories of suffering and trauma. Therapists empathically joined with them
are likely to be as well. The challenge to the therapist is to be consciously attuned to his
or her own somatic state and develop the skills of being able to bring himself or herself
down from the aroused state at the end of a session and end of a day. This attention
to one’s own response to therapeutic empathy is likely a critical factor in managing the
stresses inherent in the work over long periods of time.
Over the past couple decades, there has been a growing understanding of the effect
that working with the suffering of others can have on the caregiver (Figley, 1995; Meadors
& Lamson, 2008). In her work on stress of professional caregivers, Vachon (2004, p. 992)
states, “Not only do patients and their families suffer distress when confronting terminal
illness, but so do those who care for them. The professional who cares and empathizes
with patients and their families can experience significant stress in response to working
with dying persons as well as in response to the death of particular patients.” She goes
on to note that the stress may be due to a variety of internal factors, such as previous
or current life experiences, personal death experience, too much emotional investment
in patients without sufficient replenishment over too long a time, or from feelings of
powerlessness and lack of control in the health care system.
If professional caregivers fail to develop adequate professional boundaries, as
discussed earlier, or adequately attend to their own states and skills to manage these
boundaries, two different forms of caregiver stress may develop. The professional may
experience burnout or compassion fatigue. While these terms are sometimes used
synonymously, they are actually somewhat different, and it is helpful to be aware of the
risks of both.
Burnout
Systems issues in the workplace can place a person at risk of high levels of stress,
resulting in burnout. These stressors include high demands placed on individuals,
unrealistic expectations of workload, limited or inadequate resources, or limited
professional support. Burnout can be defined as a state of physical, emotional and mental
exhaustion, depersonalization, and reduced personal accomplishment caused by long-
term involvement in emotionally demanding situations (Maslach,1982). The emotional
demands are usually caused by high expectations combined with chronic situational
stress (Pines & Aronson, 1988).
Burnout tends to be high when professionals perceive a low level of control over
the care they provide, whether that’s due to authoritarian supervisors, lack of input into
policies that govern a person’s job, or being given more responsibility or higher work
volume than a person feels like he or she can handle (Maslach, 1982). Hospice and
palliative care staff, specifically, were found to experience increased stress when workloads
were unrealistic, level of involvement in decision making was low, and social support was
not available (Vachon, 2004). In her study on occupational stress in caregivers for the
terminally ill, Vachon (1987) noted that despite her expectations that much of the stress
experienced by caregivers would be related to their interactions with patients, she found
that this expectation was not the case. Most of the stress experienced was attributed
to the work environment and occupational role rather than the direct work with dying
patients and their families.
Compassion Fatigue
Elements of burnout can be seen in all professional settings. A unique form of it, labeled
compassion fatigue, is directly linked to people in caregiving professions (Joinson, 1992).
Compassion fatigue can be defined as a pattern of tiredness and emotional depletion from
too much caring and too little self-caring (Ochberg, 1998). Other terms for the concept
include compassion stress, secondary traumatic stress, or vicarious traumatization. Figley
(1995, p. 7) defines the concept of secondary traumatic stress as “the natural consequent
behaviors and emotions resulting from knowing about a traumatizing event experienced
by a significant other—the stress resulting from helping or wanting to help a traumatized
or suffering person.” Working with the dying and the bereaved is emotionally demanding
work. Hospice workers, palliative care professionals, and others who provide care for
people with life-threatening conditions frequently come up against high levels of
suffering in the people they care for. Professional work that is centered on the emotional
suffering of clients includes absorbing information that is about suffering. Absorbing the
information about suffering often includes absorbing that suffering itself as well (Figley,
1995, 2002).
Figley (1995b) contended that therapists who have enormous capacity for feeling
and expressing empathy—in short, the most effective therapists—are the ones who tend
to be at highest risk of being adversely effected by the experiences of their clients, since
they are the most likely to absorb the pain and traumatization of their clients. More
recently, researchers are challenging this formulation, suggesting that it is not empathy,
per se, that causes compassion fatigue, but rather, what a person does with the empathy
they experience.
Considering the view that we respond empathically on a physiological level to the
clients we sit with, Rothschild (2006) asserts that the problem in terms of compassion
fatigue seems to be not one of too much empathy, but rather, the inability to turn it
off when done. Therefore, caregiving professionals are at particular risk of developing
compassion fatigue if they are exclusively focused on the suffering of others and unaware
of the state of their own body and mind. This notion is supported by various findings
that a high level of empathic engagement serves as a protective practice for clinicians
who worked with traumatized clients, providing it was in conjunction with a high level
of self-awareness and clarity about interpersonal boundaries, enabling the therapist to
get very close without confusing the clients’ experience with his or her own (Harrison &
Westwood, 2009; Weininger & Kearney, 2011).
Strategies for Avoiding and Managing Compassion Fatigue
There is a growing body of literature addressing strategies to help avoid developing or to
ameliorate caregiver stress. However, there is limited empirical examination of the efficacy
of teaching these strategies (Paris & Hoge, 2010), and the evidence that does exist is
somewhat equivocal. The primary characteristic that does receive consistent empirical
support is that of self-awareness (Harrison & Westwood, 2009; Kearney, 2009; Rothschild,
2006; Wicks, 2008). Likewise, strategies that foster the development of self-awareness,
such as mindfulness meditation and reflective journaling, have received empirical support
as well (Shapiro, Astin, Bishop, & Cordova, 2005; Harrison & Westwood, 2009). These
findings are in keeping with the paradigm for compassion fatigue described by Rothschild
(2006). If a person is self-aware, including of his or her somatic responses, there is a
much greater likelihood that he or she will be able to avoid patterns that lead to chronic
stress. Heightened self-awareness will also play an important role when working with the
bereaved in terms of managing the task of keeping personal losses and difficult emotions
separate from those of clients.
Woven through the literature on self-care is a range of cognitive and behavioral
approaches. While empirical support for the effectiveness of these strategies is limited,
they are ones that make a certain amount of intuitive sense. They can be divided into
three categories: professional, personal, and organizational strategies. It is reasonable to
believe that these strategies are more effective if employed by a therapist with a good
level of self-awareness. It is also feasible that inattention to the variable of self-awareness
is a factor in the sometimes contradictory research findings on efficacy.
Professional strategies include those aimed at a person’s professional identity and
activity. An important strategy is the development and maintenance of clear professional
boundaries (Pearlman & Saakvitne, 1995; Rourke, 2007). These limits include both
interpersonal boundaries, which provide a protective function by helping professionals
not take on the suffering of their clients as their own, and boundaries that help to keep
a clear line between work and home. Professionals able to set time limits on their work
and keep their work life separate from their home life manage their stress much more
effectively over time (Ablett & Jones, 2007; Becvar, 2003; Davies et al., 1996; Meadors
& Lamson, 2008).
Because of the nature of many of the stresses in our work, it is important to have social
support from colleagues. Workplace support is important because it is our colleagues who
understand the rewards of the work and the reasons we are in this field. So, too, are they
the ones who best understand the losses and related stress we experience in this context
(Davies, et al., 1996; Papadatou, 2002; Vachon, 2007).
The second category is that of personal strategies. Having a number of ways to
nurture oneself is necessary to counterbalance the affects of the stresses inherent in
work with the dying and the bereaved. Practices that develop self-awareness, such as
meditation, journaling, or psychotherapy are of high importance. Time away from work
needs to be used to focus on things other than attending to the suffering of others.
Social supports in one’s personal world, separate from work, are important because they
allow people to develop aspects of themselves that are not about caregiving (Figley,
2002a). Behaviors that support physical, emotional, and spiritual health are central to
preventing or managing compassion fatigue (Becvar, 2003; Holland & Neimeyer, 2005;
Joinson, 1992; Meadors & Lamson, 2008). These nurturing strategies include adequate
rest; nutrition; exercise; and activities such as meditation, journaling, and developing a
strong social network. Spiritual well-being may be enhanced through activities such as
spending time in nature or engaging in a religious practice. Humor offers another way of
reducing the effects of stress (Ablett & Jones, 2007; Welsh, 1999).
Finally, organizational efforts to develop systems for staff support are important
(Davies et al., 1996; Figley, 2002a; Meadors & Lamson, 2008). Thompson (2011) makes
a strong case for attention to the role that organizational issues play in caregiver stress,
as it is impossible to adequately address systems issues on a person level. Additionally,
it is important to attend to both formal organizational support, such as adequate leave
time, supervision, and ongoing educational trainings, as well as informal support, such
as the development of an organizational culture that values staff relationships, promotes
job satisfaction, and recognizes the need to attend to the stressors inherent in the work
(Maasdorp, 2011). Without this support from organizations and institutions, it is too easy
to overtly or covertly frame caregiver stress as a weakness in the individual rather than as
a normal response to problems in the system or in the work.
411
Chapter 41
Resources and Research in Thanatology

Melissa Bell, Gordon Thornton, and Mary Lou Zanich
It is vital for certified thanatology professionals of all kinds to keep abreast of current
research and be familiar with important resources provided by national and local
organizations in the field. For clinicians, such resources may be an adjunct to counseling.
For instance, a self-help group experience might add to individual therapy, and written
materials can provide the foundation for psychoeducational aspects of therapy. For
educators, such resources may aid in teaching about dying, death, and bereavement.
Moreover, individuals who are facing a crisis in dying or bereavement often seek out
educators to recommend resources that might be helpful.
A few provisos must be noted. First, the purpose of this chapter is primarily
to identify organizational resources expected for professionals who have a basic
foundational knowledge about thanatology; these resources will be organized around
the basic competency categories that structure this handbook. Also, the emphasis will
be on organizational resources on the national level in the United States; it goes without
saying that professionals need to be familiar with local resources. Lastly, it is important
for certified thanatologists to be aware of, and use the resources provided in, texts/
journals published in the areas of death and dying. Although the chapters throughout this
handbook cite a wealth of books and articles, a nonexhaustive list of text and research
resources is included within the competency categories below. Some these resources are
included because of their status as modern classics in the field.
Dying
Organizations
Alzheimer’s Association (www.alz.org) supports advocacy and research to find prevention
methods, new treatments, and, ultimately, a cure for Alzheimer’s disease. The association
provides referrals, an online network for caregivers, and support groups.
The American Childhood Cancer Organization, (www.acco.org) website contains infor-

mation on resources, awareness and advocacy, and research. The organization offers
free books on childhood cancer to families, patients, educators, and caregivers. ACCO
advocates for increased research, including less toxic treatments for children. This website
hosts The Candlelighters, an international organization established in 1970 by parents of
children suffering from cancer. In aiding children with cancer the website offers informa-
tion and support to children with cancer, childhood cancer survivors, their families, and
health care providers.
Center to Advance Palliative Care (CAPC) (www.capc.org) provides resources for
palliative care program development and expansion. The website includes information for
health care professionals including information on certification, education, fellowships,
and professional organizations. It also provides links to recommended journals and other
publications.
Children’s Hospice International (CHI) (www.chionline.org) supports the inclusion of
children and adolescents into hospice care. The website provides information on the
Children’s Hospice International Program for All-Inclusive Care for Children and their
Families (CHI PACC). The program was developed with the involvement of CHI and
provides a model of care that addresses the needs of children with life-threatening
conditions and their families. CHI publishes Home Care for Seriously Ill Children: A
Manual for Parents and Interdisciplinary Clinical Manual for Pediatric Hospice and
Palliative Care, both of which can be ordered through the website.
HIV/AIDS has multiple websites. The CDC National Prevention Information Network
(www.cdcnpin.org) provides references, referrals, and information. The Elton John Aids
Foundation (www.ejaf.org) funds research and education. The Gay Men’s Health Crisis
(gmhc.org) offers a variety of programs for men, women, and children that include
education and outreach programs, a hotline, and counseling services.
Hospice Action Network (HAN) (www.hospiceactionnetwork.org) is a legislative advocacy
group for hospice care. HAN seeks to mobilize hospice advocates to increase influence in
policy making for improved access to hospice and palliative care and to represent end-
of-life issues. The website provides information for the media and congress as well as
providing an online legislative advocacy center for the public.
Hospice Foundation of America (HFA) (www.hospicefoundation.org) offers “leadership
in the development and application of hospice” providing programs for professionals
(who are dealing with dying and grief on a personal or professional basis), disseminates
information to the public, and publishes work on dying and grief. An annual teleconference,
“Living with Grief,” educates professionals on a variety of topics in thanatology and may
provide continuing education credits. The organization’s website also has a listing of the
Living With Grief books and videos published by HFA. A monthly newsletter, Journeys,
Resources and Research in Thanatology 413
is distributed to those experiencing grief as a way to offer support and guidance. HFA’s
website provides information on subjects such as: myths about dying, what to expect
before and after death, pain, and hospice. Information designed specifically to assist
caregivers is also provided.
International Association for Hospice and Palliative Care (IAHPC) (www.hospicecare.
com/) provides resources to advance hospice and palliative care on an international
level. The website includes information and links to fellowships to support professionals
to travel to developing nations to teach about hospice and palliative care, scholarship
programs, education, international organizations, and publications. The website also
includes a recommended reading list and policy and advocacy tools. IAHPC provides a
free online newsletter.
The mission of Make-A-Wish Foundation of America (www.wish.org) is to make wishes
come true for children between the ages of 2½ and 18 who have life-threatening, but
not necessarily terminal, illnesses. Thousands of children’s wishes have been turned into
reality. Professionals in the medical field, parents, and the children themselves may refer a
child for consideration. The foundation’s website allows a search for local chapters.
National Hospice Foundation (NHF) (www.nationalhospicefoundation.org/home.cfm) is
a supporter of the quality and research goals of the National Hospice and Palliative Care
Organization. The website includes information about caregiver resources and special
programs related to pediatrics, veterans, and professional education. The website also
provides access to information related to advance care planning, living wills, advance
directives, and financial planning. NHF produces a newsletter called Giving Matters,
which is available online.
The National Hospice and Palliative Care Organization (NHPCO) (www.nhpco.org) is
dedicated to increasing the availability of hospice care and improving end-of-life care
for terminally ill patients and their families. Its underlying philosophy is to ensure health
care, pain management, and emotional support to patients along with their families.
Members of NHPCO include hospices, palliative care programs, bereavement programs,
researchers, home health agencies, and health care consultants. The NHPCO website
allows individuals to find local hospice programs, palliative care programs, bereavement
programs, and grief therapy.
Super Sibs (www.supersibs.org) provides support and grief resources for siblings of
children living, dying, or deceased due to cancer. The site includes a Sib Spot that offers
age-specific activities as well as information related to specific diagnoses. The site also
contains information for medical and psychosocial professionals, parents and guardians,
grandparents, religious and spiritual leaders, friends and neighbors, and educators. The
organization has a donation-based program that provides scholarships to high school
seniors who have had a sibling with cancer. The monthly newsletter SibBlast can be
received via e-mail.
Research, Books, and Other Resources

In Awareness of Dying, Barney Glaser and Anselm Strauss (1965) provided the foundation
for four types of communication patterns (closed awareness, suspected awareness,
mutual pretense, and open awareness) common in those confronting death.
On Death and Dying is the classical work by Elizabeth Kübler-Ross (1969). Reporting
transcript data from dying patients, the book describes stages of the dying process, i.e.,
denial and isolation, anger, bargaining, depression, and acceptance.
In Living With Life Threatening Illness: A Guide for Patients, Families, and Caregivers,
Kenneth Doka (1993) considers the dynamics that affect people living with a life-
shortening illness. Five distinct phases are proposed: prediagnostic, acute, chronic,
terminal, and recovery.
In The Private Worlds of Dying Children, Myra Bluebond-Langner (1978) describes
children with leukemia and their understanding of their illness. Potential changes in self-
concept and recognition of the seriousness of their illness for these children are outlined.

Organizations
Caring Connections (www.caringinfo.org) offers information and support for advanced
care planning including talking with health care providers and with loved ones who are
facing end-of-life decisions. The website includes information on various aspects of finan-
cial and advance planning, as well as information on advance directives that are specific
to each state. Links to hospice care in specific geographical areas are also provided. There
are special sections for employers and caregivers.
Children of Aging Parents (CAPS) (www.caps4caregivers.org) provides information,
referrals, and support, including support groups, to caregivers. In addition, the organization
offers educational workshops and conferences for professionals and caregivers. CAPS
assists the formation of new, CAPS-affiliated groups and provides training and support
to those groups.
Compassion and Choices (www.compassionandchoices.org) works to improve end-of-
life care including pain control, advance directives, and physician assistance in dying. In
addition to education so that the dying and their families understand options and rights,
the group is actively involved in the legal and legislative arena. Compassion and Choices
has as its vision a society where everyone receives state-of-the-art care at the end of
life and a full range of choices for dying in comfort, dignity, and control. This nonprofit
organization has over 60 chapters.
Both Donate Life: Make Organ and Tissue Donation Your Way of Life (http://donatelife.
net) and the U.S. government’s website for organ donation (www.organdonor.gov)
provide valuable information about organ donation. The Donate Life website notes that
many people die each day waiting for organ transplantations. Sections on frequently
asked questions and myths and facts about donation dispel common misconceptions. The
site provides organ donor cards and special information for minority donations.
Five Wishes is a booklet (available at www.agingwithdignity.org/5wishes.html) that
serves as a living will documenting how individuals wish to be treated if they are not
able to make their own end-of-life decisions due to a serious illness. It takes into account
an individual’s medical wishes, while also attending to his or her personal, emotional,
and spiritual needs. Additionally, it encourages preplanning for funerals. Approximately
10,000 organizations in the United States offer copies of Five Wishes, such as churches,
hospices, hospitals, and law offices. The website allows access to a nondownloadable copy
of Five Wishes; the booklet may be ordered online. The website also allows individuals to
search for states that recognize Five Wishes as a legal document. Five Wishes is written
in layman’s terms and may be signed at home.
The National Kidney Foundation (NKF) has incorporated the former National Donor
Family Council (www.kidney.org/transplantation/donorFamilies/index.cfm) as a subsec-
tion. Donor Families provides support and advocacy to families of deceased organ/tissue
donors and assistance to health care professionals working with these individuals. NDFC
publishes a newsletter called For Those Who Give and Grieve, which provides informa-
tion on organ/tissue donation and offers grieving families the chance to memorialize
a donor through stories, poetry, and pictures. The newsletter also has a Donor Family
Friends column, which utilizes a pen pal system that allows grieving families to offer
support to other families having a similar experience. NDFC also has the Patches of Love
Quilt, the National Donor Family Quilt, that allows a donor’s relatives to be memorial-
ized in a unique way. Finally, the website provides a listing of books as well as links to
bereavement websites.
The SUPPORT study (1995) documents the difficulties in the medical field with end-
of-life issues. Even after intervention, there were still shortcomings in communication,
frequency of aggressive treatment, and hospitalized deaths.
Loss, Grief, and Mourning

Organizations
American Widow Project (www.americanwidowproject.org) connects military widows to
one another to promote healing. The site contains access to resources, including a DVD,
newsletter, list of scholarships and grants available to military survivors and their families,
and a hotline staffed by a military widow. Social events are planned to connect widows
in person.
Bereaved Parents of the USA (BP/USA) (www.bereavedparentsusa.org) is a self-help

group for bereaved parents, grandparents, and siblings who are suffering after the death
of a child. The organization’s website provides information on the grief process and
produces a newsletter called A Journey Together, which discusses bereavement. Local
chapters hold monthly meetings, and these meeting times and locations may be found on
the website. BP/USA also offers those grieving over the loss of a child the opportunity to
attend workshops on grief and rebuilding life. Finally, a special page is dedicated to links
to helpful resources.
Center for Loss in Multiple Births (CLIMB) (www.climb-support.org) was founded by and
for parents who have experienced the death of one or more children during a multiple
pregnancy, at birth, or in childhood. The organization is intended for families, caregivers,
and organizations whose goal is to provide support and comfort to parents who have lost
a child of a multiple pregnancy. The organization is volunteer-run and provides services to
the United States, Canada, and other countries. CLIMB provides a newsletter every three
months with personal stories and updates, articles, and information.
The Compassionate Friends (TCF) (www.compassionatefriends.org) has 600 support
groups across the United States with the mission of helping bereaved families following
the death of a child. These local chapters have monthly meetings to offer support and
the opportunity to work on grief issues. TCF’s website provides chat rooms where the
bereaved can offer support, help each other deal with grief, and provides resources and
information on grief. TCF also has a pen pal program for grieving siblings of children who
died. A monthly newsletter, phone calls, and home visits are used by the local chapters to
reach out to people grieving over the death of a child. We Need Not Walk Alone is TCF’s
bimonthly magazine that discusses grief issues. There is also a national conference that
includes workshops, siblings’ program, and a 2 mile Walk to Remember. During TCF’s
Worldwide Candle Lighting program, candles are lit around the world for 1 hour on the
second Sunday in December in remembrance of children who have died.
GriefHaven (www.griefhaven.org) is an organization for parents who are grieving the loss
of a child. The website contains a chat room for grieving parents and links to resources
including support organizations and groups, grief specialists, funeral preplanning, and
recommended books and other literature. The organization provides free newsletters for
parents and siblings.
Grief’s Journey (www.griefsjourney.com) website concentrates on bereavement for the
loss of a spouse or life partner. It provides links to resources on various topics including
legal, health, and financial information as well as information on how to perform do-it-
yourself tasks and projects that one’s deceased spouse or life partner may have managed.
There are also sections on coping with special days and parenting after the death of a
spouse or life partner.
March of Dimes (www.marchofdimes.com/baby/loss.html) focuses on grieving due to

the loss of a baby through miscarriage, stillbirth, or after birth. The website contains links
to state-level March of Dimes chapters and information on the Hurt to Healing literature.
MISS Foundation (www.missfoundation.org/index.html) is an international organiza-
tion that provides crisis and long-term support to families after the death of a child; the
foundation also participates in legislative activities and advocacy. There are sections on
the website intended for professionals, families, bereaved children, and groups. Website
information is available in English and Spanish. Information about The Kindness Project,
started by a member of MISS as an avenue to help resolve grief through random acts of
kindness, is available on the website.
The National Alliance for Grieving Children (NAGC) (www.childrengrieve.org) provides
a network for communication between children’s bereavement professionals to facilitate
the sharing of resources that support grieving families. The website includes a national
database on children’s bereavement support programs. NAGC also offers online
education, webinars, online discussions, and an annual symposium on children’s grief. A
section for help within schools and access to an archive of the organization’s newsletter
are also provided.
National Funeral Directors Association (NFDA) (www.nfda.org) offers educational pro-
gramming, including online learning, podcasts, webinar and home study programs, as
well as events for professionals. The website includes links for professionals and for the
general public. A special section for grief resources contains information on more specific
types of loss such as the loss of a child or teen. A funeral home locator and a digital ver-
sion of the NFDA publication The Director are available online.
National Students of AMF (Actively Moving Forward) Support Network
(www.studentsofamf.org) is an organization that connects grieving college students to
one another through a supportive blog and other events. The organization has National
Students of AMF Campus Chapters on college campuses nationwide. The organization
also seeks to raise awareness of the needs of grieving college students and supports the
annual National College Student Grief Awareness Week.
National SUID/SIDS Resource Center (The National Sudden Unexpected Infant Death/
Sudden Infant Death Resource Center (www.sidscenter.org/Bereavement/index.
html) contains a section on bereavement support. The website provides resources for
families, friends, children, and providers including literature and links to resources and
organizations.
Sesame Street Workshop (www.sesameworkshop.org/what-we-do/our-work/dealing-
with-grief-30-detail.html?print=1) provides families and grief care providers nationally
with outreach kits, When Families Grieve (available in both English and Spanish). One of
the kits is intended for the general public while the other is intended for military families.
The kits contain DVDs, books, and family activities.
SHARE: Pregnancy and Infant Loss Support, Inc. (www.nationalshare.org) is a national

organization committed to helping individuals who have experienced the death of a baby
through miscarriage, stillbirth, or infant fatality. The organization’s website provides a
directory for local SHARE support groups, as well as information on the grief process,
funeral services, and on how to honor and remember a baby. This website also offers a
chat room and message board. A separate page displays current research on miscarriage,
stillbirth, and support to parents after losing a baby as well as upcoming research on
these topics asking for participants. For professionals, a listing of resources is offered and
training is provided. Finally, SHARE publishes a bimonthly newsletter called Sharing for
bereaved parents.
Tragedy Assistance Program for Survivors (TAPS) (www.taps.org) is a national organiza-
tion that provides information and support for bereaved individuals who have lost a loved
one serving in the armed services. TAPS has a tollfree hotline (800-959-8277) staffed
with trained crisis intervention professionals to help these individuals with their grief. Ad-
ditionally, TAPS also has a survivor network that connects people who have experienced
the death of a loved one while in the armed services. The Annual National Military Survi-
vor Seminar and Good Grief Camp for Young Survivors were established by TAPS in order
to “remember the love, celebrate the life, and share the journey” through workshops and
support groups. TAPS’ website offers a chat room for bereaved individuals where they
can share experiences with one another. Finally, TAPS publishes A Kids Journey of Grief,
TAPS Edition as well as TAPS Quarterly Magazine.
Twinless Twins (www.twinlesstwins.org) provides supportive services to twins (and sib-
lings of all multiple births) who are experiencing the loss of their twin through death,
estrangement, or in-utero loss. The organization offers regional activities and national
conferences. The website includes links to recommended books, other relevant organiza-
tions, and crisis support.

Sandler and his colleagues (2003) assessed the effectiveness of a Family Bereavement
Program. The child/family intervention used age-appropriate groups and was designed
to reduce risk and increase positive factors. Findings indicated improvement in parenting,
individual risk, and protective factors.
The efficacy of family therapy with consideration of family styles was supported by
Kissane and Hooghe (2011). Both authors also noted the resilience of mourners and the
importance of natural support.
General support for a Kübler-Ross stage model of grief was found by Maciejewski,
Zhang, Block, & Prigerson (2007). Although highly criticized by ADEC professionals, the
study did validate some common reactions such as disbelief, yearning, anger, and depres-
sion to bereavement.
In Disenfranchised Grief: Recognizing Hidden Sorrow (1989), Ken Doka (editor) coined
the term disenfranchised grief as grief that is not recognized or sanctioned. In his follow-
up edited book, Disenfranchised Grief: New Directions, Challenges, and Strategies for
Practice (2002), Doka refined and elaborated on the concept.
Grief Counseling and Grief Therapy by J. William Worden (2009) provides a wide range
of information on clinical intervention and assessment of bereavement. Besides arguing
for a distinction between counseling and therapy for the bereavement, Worden describes
four basic tasks for coping with the mourning process, i.e., accept the reality of death,
process the pain of grief, adjust to the environment without the deceased, and find an
enduring connection with the deceased in the midst of embarking on a new life.
The Grieving Child (2003) by Helen Fitzgerald is written as a guide for parents. Based
on her experiences with bereaved children, the book has practical advice appropriate for
parents and professionals.
In the Handbook of Bereavement Research (2001), Stroebe, Hansson, Stroebe, and Schut
provide a theoretical and empirical base for understanding various facets of bereavement
including the methodology and ethics or research, bereavement consequences, coping
with bereavement, and intervening in the coping process.
Helping the Bereaved College Student (2011) by David E. Balk examines the prevalence
of bereavement among college students, discusses what bereaved college students say
they want and need, and offers several firsthand accounts in the form of vignettes. The
book is written primarily for professionals who are in positions to help bereaved students
(college counselors, student services personnel, and campus ministers, for instance). The
book is written in a style that is accessible to students. Numerous exercises (such as
workshops and training seminars) are presented in detail. Campuswide policies adopted
by some universities to assist bereaved students are offered verbatim.
Life and Loss: A Guide to Help Grieving Children (2000) by Linda Goldman provides
a wealth of information about bereaved children. A variety of childhood losses are
addressed. Grief work in children and a range of grief resolution techniques are discussed.
In Meaning Reconstruction and the Experience of Loss, Robert Neimeyer (2001) outlines
the challenges to the bereaved in finding meaning after a death. The griever’s assumptive
world as well as self and relationship attachments to the deceased will often need to be
reconfigured.
Conducting child bereavement groups and child grief camps are mainstays of hospice
programs (Connor & Monroe, 2011). Two noted nonhospice child bereavement programs
are the Dougy Center: The National Center for Grieving Children and Their Families
(www.dougy.org) and Highmark Caring Place (www.highmarkcaring place.com).
Living With Loss Magazine (www.bereavementmag.com) is characterized as a support

group in print for bereaved individuals. Grief professionals and individuals experiencing
grief contribute articles, poetry, and stories to the magazine.
Resilience in coping with a death is recognized in most normally bereaved individuals.
Research by George Bonanno and his colleagues (2002; 2005) has provided empirical
support for this concept.

The Center for the Advancement of Health (www.cfah.org) has the goal of “translating
health research into effective policy and practice.” The Grief Research: Gaps, Needs and
Action Project was designed to observe and report on bereavement and grief research
with the goal of improving research and care with a focus on the use of research to guide
intervention strategies. One report from the project reported on the state of bereavement
research, guidelines for improving research, and the use of research in clinical practice
(Center for the Advancement of Health, 2004), and a report from the project’s Bridging
Work Group (2005) examines the gap separating bereavement practitioners and
researchers.
Bereavement intervention with children was studied by Currier, Holland, and Neimeyer
(2007). The research questioned the effectiveness of such intervention despite the
fact that earlier intervention with the inclusion of distressed children showed positive
outcomes.
Using Complicated Grief Treatment (CGT) Shear, Frank, Houck, and Reynolds (2005)
found that the treatment was effective in a randomized controlled trial. Although not as
effective as CGT, interpersonal psychotherapy also resulted in improvement.
Grief and death anxiety measures are other resources for assessment. The Grief Experience
Inventory by Sanders, Mauger, and Strong (1985) is a 135-item self-report questionnaire.
It is designed to measure 17 dimensions of grief and also has a social desirability rating.
The inventory is available from Department of Psychology, Hood College, Frederick,
MD. The Hogan Grief Reaction Checklist (Hogan, Greenfield, & Schmidt, 2001) is a 61-
item questionnaire designed to measure grief reactions after the death of a child. Six
dimensions of grief are delineated in the checklist. The death anxiety scale by Templar
(Templar, 1970) is a 15-item true or false scale with scores from 0 to 15. The threat index:
provided forms (Tip) (Epting & Neimeyer, 1984) has 40 bipolar dimensions. Examinees
choose from the poles to identify their present self and their attitudes toward death. The
difference between the selections for self and death indicates death anxiety. The Collett-
Lester fear of death scale (Collett & Lester, 1969) consists of ratings of disagreement/
agreement on 36 statements. The measure provides scores for four dimensions of fear:
death of self, death of others, dying of self, dying of others.
Grief and Bereavement in Contemporary Society: Bridging Research and Practice

(Neimeyer, Harris, Winokuer, & Thornton, 2011) contains chapters that are coauthored
by a researcher and a clinician. A wide variety of losses are discussed within a theoretical,
practice, and research context.
Therese A. Rando in a variety of books such as Treatment of Complicated Mourning
(1993) and Grief, Dying and Death: Clinical Interventions for Caregivers (1984) describes
theoretical and clinical approaches to issues in bereavement including her theory about
coping with loss that includes recognizing the loss, reacting to the separation, recollecting
and experiencing the deceased and the relationship, relinquishing the old, readjusting to
move adaptively, and reinvesting.
Organizational Resources: Traumatic Death

Organizations
AirCraft Casualty Emotional Support Services (ACCESS) (www.accesshelp.org) is a
national organization that provides volunteer peer grief support and resource information
to those who have survived or lost loved ones in air disasters including commercial,
private, helicopter, and military air disasters, and those who lost loved ones in the World
Trade Center and the Pentagon terrorist attacks. ACCESS has a hotline and provides
disaster response training for crisis responders. Newsletters from the organization are
available online.
American Association of Suicidology (AAS) (www.suicidology.org) is dedicated to
research, information dissemination, and prevention of suicide. Members of AAS include
mental health care providers, researchers, crisis intervention centers, school employees,
and suicide survivors. AAS provides certification to crisis intervention centers and crisis
workers. A directory of local survivor support groups is offered; AAS also sponsors a Healing
After Suicide Conference. The organization’s website offers pages on how to identify and
assist a suicidal individual, as well as links providing more in-depth information on suicide
and prevention resources. Many publications are offered by AAS including, Suicide
and Life-Threatening Behavior (bimonthly journal), Newslink (members’ newsletter),
Surviving Suicide (survivors’ newsletter), and a Directory of Suicide Prevention and Crisis
Intervention Agencies in the U.S.
American Foundation for Suicide Prevention (www.afsp.org), along with a focus
on preventing suicide and raising awareness, provides support to individuals who are
mourning a suicide loss. A directory of local chapters is available on the website as well
as information on training that AFSP provides to those who facilitate or plan to facilitate
suicide bereavement groups for adults. Together with the Suicide Prevention Resource
Center, AFSP developed After a Suicide: A Toolkit for Schools. A copy can be downloaded
online.
Concerns of Police Survivors (COPS) (www.nationalcops.org) is a national organization

that provides assistance to families of police officers who have been killed in the line of
duty. COPS communicates with the surviving family members six times during a year;
peer support is available. Membership is extended to the spouses, children, parents,
siblings, significant others, and coworkers affected by the death of a police officer while
on duty. The National Police Survivors’ Conference takes place each May, which allows
law enforcement survivors to work on grief and to share information. Also, the COPS
Kids/Teens Program and Summer Camp are offered to children who are grieving over the
loss of a parent. During these programs, the children receive support and guidance from
professionals. COPS’ Annual Wilderness Experience is designed for surviving children
between the ages of 15 to 21; this program is designed to increase self-esteem. Among
COPS’ many programs are: annual retreats, which include activities and grief counseling,
offered for surviving parents, spouses, siblings, adult children, and in-laws; supplying
volunteers who will attend the trial of the accused and provide support to the victim’s
family; and financial assistance to the victims’ children for therapy to work on grief issues
surrounding the death of a parent. COPS’ publications include a quarterly newsletter and
a handbook entitled Support Services to Surviving Families of Line-of-Duty Death.
Crisis intervention training is available from the Red Cross (www.redcross.org) through its
mental health disaster training, from the International Critical Incident Stress Foundation
(www.icisf.org). There is controversy about the effectiveness of crisis/critical incident
interventions; however, many professionals have provided those services.
Friends for Survival (www.friendsforsurvival.org) is a national outreach organization that
provides resources for survivors of suicide and to professionals who work with those
who have been impacted by suicide. Friends for Survival provides monthly newsletters
(available online in electronic form), monthly educational and supportive meetings,
referrals, and training programs.
Grief Recovery After a Substance Passing (GRASP) (grasphelp.org) is mainly for
nonprofessionals and provides resources to individuals and families who have lost a
loved one due to substance abuse or addiction. The website provides a directory of local
chapters and information on starting other local chapters.
Mothers Against Drunk Driving (MADD) (www.madd.org) is an organization dedicated
to ending drunk driving, providing support to victims of drunk drivers, and educating
the public about drunk driving. There are approximately 600 local chapters of MADD.
Extensive information may be located on the website concerning the grief process after
losing a loved one in a drunk driving accident, posttraumatic stress disorder due to
witnessing the traumatic event, and physiological consequences of the accident and how
to cope. Also online discussion forums are provided on MADD’s website to allow victims to
have a space to talk to others who are experiencing similar situations. Local chapters offer
support groups. Victims may be provided with a victim advocate who assists with the legal
and court issues by providing information (e.g., on steps to execute in order to receive a
crash report, victim’s rights, attorneys, and the legal system, etc.), working on the impact
statement with the victim, and accompanying the victim to court. Victim advocates are
also a source of emotional support and may also help victims seeking financial services
from the Crime Victims Compensation Fund. MADD publishes MADDvocate, a magazine
designed for victims of drunk driving and for victims’ advocates.
National Fallen Firefighters Foundation (www.firehero.org) is dedicated to honoring and
remembering firefighters who died in the line of duty and providing support for survivors.
Activities include a memorial weekend for families, coworkers, and the public to honor
firefighters who died in the line of duty during the year, and a survivor’s weekend for
families to interact with trained grief counselors. The foundation provides support
programs for survivors including a lending library, grief brochures, and a Fire Service
Survivors Network.
National Organization for Victim Assistance (NOVA) (www.try-nova.org) offers
information, support, and advocacy for victims of violent crimes and their survivors.
NOVA offers a 24-hour tollfree hotline called the National Crime Victim Information and
Referral Hotline that provides crisis counseling, advocacy, referrals to local programs,
and information for violent crime victims and survivors. NOVA’s website offers victims
and survivors essential information on crime, the steps to take following a crime,
and possible trauma caused by a violent crime. NOVA has also created the National
Community Crisis Response Team, a multidisciplinary team that goes to sites affected by
a catastrophic event, and the Hostage Family Project, designed to help meet the needs of
families of Americans who have been taken hostage. The membership of NOVA includes
violent crime victims and survivors, mental health professionals, researchers, and legal
professionals. To assist victim advocates in helping victims and survivors, NOVA publishes
Directory of Victim Assistance Programs and Resources in the United States; Directory of
National Programs Serving Survivors of Crime, Crisis and Trauma; and the Directory of
International Programs Serving Survivors of Crime, Crisis and Trauma. NOVA offers an
annual conference, training seminars, and workshops.
Parents of Murdered Children (POMC) (www.pomc.com) is a national organization
providing assistance, crisis intervention, and referrals to local chapters for those grieving
due to the murder of a child. Members include those who are grieving as well as the
professionals who support them. POMC local chapters provide monthly meetings,
connect members through telephone contact, discuss grief, and arrange for murder
survivors to be accompanied to court. POMC’s website offers a Forum of Hope, which
allows members to share thoughts, emotions, and experiences with other individuals
also grieving the loss of a loved one to murder. Also, the website provides individuals
the opportunity to ask questions of various experts, such as a forensic pathologist,
bereavement specialist, homicide detective, judge, funeral director, chief counsel, forensic
scientist, or criminal profiler. Helpful information is also offered on the website about
writing a victim’s impact statement, and information is provided for professionals about
the problems facing murder survivors. POMC offers other programs including: a self-help
weekend developed to help murder survivors grieve and rebuild a new life; The National
Murder Response Team, established to help and support communities following a violent
murder; Survivors, a triannual newsletter offering important information to murder
survivors; and training for mental health professionals, social workers, doctors, nurses,
ministers, teachers, lawyers, and law enforcement personnel on murder survivors and the
consequences of murder.
Survivors of Violent Loss Resources (www.svlp.org/home.html) offers support to
those who are experiencing grief after a traumatic loss such as homicide, suicide, drunk
driving, or terrorist attacks through the Survivors of Violent Loss Program. SVLR provides
consultation and training services as well.
United States Department of Veterans Affairs Bereavement Counseling (www.vetcenter.
va.gov/Bereavement_Counseling.asp) offers bereavement counseling to family members
of armed forces personnel, reservists, and National Guardsman who died while on duty.
Services are provided at local centers or can be provided in the family’s home. The website
contains contact information for services.

Suicide and Life Threatening Behavior publishes articles on research, theory, and clinical
practice that are concerned with self-inflected deaths.
Linda Goldman’s Breaking the Silence: A Guide to Helping Children With Complicated
Grief—Suicide, Homicide, AIDS, Violence and Abuse (2002) focuses on violent deaths in
the lives of children and is a guide to helping children with complicated grief.
Surviving: When Someone You Love Was Murdered (1989) written by Lulu Redmond,
a past president of the Association for Death Education and Counseling, has practical
information on the grief associated with a death by homicide and on assessment and
therapy guidelines and other suggestions for professionals.
Edwin Shneidman was a pioneer in the study of suicide and suicide prevention. He was
noted for his groundbreaking work on suicide notes, Clues to Suicide (1968) with Norman
Farberow. Shneidman coined terms such as psychological autopsy and psychache as
methods for understanding suicidal behavior.
TAPS (Tragedy Assistance Program for Survivors) magazine is a quarterly publication
that provides professionally written articles for the bereaved, highlights of TAPS events,
news of TAPS events, and encouragement and support to bereaved military personnel
and their families.
Death Education
Organizations
The Association for Death Education and Counseling (www.adec.org) is an international,
multidisciplinary professional organization. Its purpose is to promote excellence in
research, theory, and clinical practice in the areas of death education, care of the dying,
and bereavement counseling.
The Center for Disease Control and Prevention (www.cdc.gov/index.htm) provides
information on many health-related issues including suicide. In particular, the CDC’s
National Center for Health Statistics (www.cdc.gov/nchs) summarizes overall death and
mortality rates for the United States.
Growth House (growthhouse.org) provides access to books, blogs, podcasts, and videos
about end-of-life care, palliative medicine, and hospice care. The material is intended for
both the general public and for professionals. Resources can be accessed free of charge
online.
The International Work Group on Death, Dying, and Bereavement (IWGDDB) (www.
iwgddb.com) consists of professionals from around the world. IWG develops and
publishes policy statements regarding thanatology issues.
PBS Kids Dealing With Death (pbskids.org/itsmylife/emotions/death/index.html) is a site
for children and their parents that addresses issues such as understanding grief, funerals
and memorials, when a friend is grieving, pet loss, and other issues related to death. True
Tales on the website are stories of other children who are dealing with grief.

Death Studies is a professional journal that publishes articles on bereavement counseling,
research, education, care of the dying, and ethics. Contributors include professors,
clinicians, nurses, and medical doctors. Book reviews and News & Notes are special
sections in each issue.
Omega—Journal of Death and Dying provides articles on terminal illnesses, dying, and
the grief process. Among the contributors are professors, medical doctors, and funeral
directors. Along with the journal Death Studies, this journal is recognized for scholarship
on issues related to death and dying and serves to assist mental health professionals in
working in crisis management.
Death and Dying, Life and Living (2012) by Charles Corr and Donna Corr provides
comprehensive coverage of the field of thanatology. A popular textbook in thanatology,
the authors’ analyses of statistical data to illustrate trends, the wealth of resources
provided, and the thoughtful synthesis of research and practice are strengths of the book.
Based on the hospice philosophy, the book also has a good description of the four tasks
(physical, psychological, social, and spiritual) of the dying person. Since 2002 the book
has been one of the required readings for the ADEC certification examination.
In Explaining Death to Children (1967) and other books such as Talking about Death:
A Dialogue Between Parent and Child (1990) and Living When a Loved One Has Died
(1977) Earl Grollman has encouraged professionals and laypersons to recognize and to
educate children about death, dying, and bereavement.
Growing Through Grief: A K-12 Curriculum to Help Young People Through All Kinds of
Loss (O’Toole, 1989) is a manual in age-appropriate sections with over 120 handouts for
educators or professionals working with bereaved children.
The Last Dance: Encountering Death and Dying (2010) by Lynne DeSpelder and Al
Strickland is a popular college text for courses on death and dying. The text provides a
broad range of topics in thanatology and gives rich cultural information. Since 2002, the
book has been one of the required readings for the ADEC certification examination.
Principles and Practice of Grief Counseling (Winokuer & Harris, 2012) is an introductory
textbook for grief counseling integrating information from research, theory, and practice.
The Psychology of Death by Robert Kastenbaum and Ruth Aisenberg (1992) was the first
broad comprehensive book on thanatology.
ADEC Ethics Code (www.adec.org) details a comprehensive set of ethical standards for
thanatologists engaged in clinical practice, research, and teaching.
CMI Educational Institute (www.cmieducation.com) conducts seminars across the United
States as the nonprofit American Academy of Bereavement (AAB). AAB is dedicated to
providing education for professionals and general public on topics concerned related to
thanatology, especially bereavement.
Online courses and programs are available from many sources (such as National Center
for Death Education at www.mountida.edu). It is important to note that the quality of
these educational programs may vary greatly and that the qualification of the faculty and
the objectives of the program should be investigated before enrollment.
Talking to Children About Death is a 14-page, patient informational publication from
the Clinical Center of the National Institutes of Health, (www.clinicalcenter.nih.gov/ccc/
patient_education/pepubs/childeath.pdf). The document includes a list of recommended
books for parents and for children.
Concluding Remarks
As the field of thanatology continues to develop, additional resource materials will
become available. The resources listed above attempt to capture the most important and
relevant organizations in the field today. With the passage of time, such organizations
may disappear, change, or be subsumed; new organizations will be added. It behooves
the practitioner to explore the Internet on his or her own in an attempt to stay current.
This proviso is especially true with regard to the professional literature appearing in books
and research studies. Such a surfeit of resources is one sign of the maturity of the field of
thanatology and the body of knowledge produced by its professionals.
429
Chapter 42
Thanatology in the Digital Age

Anne M. Smith and Corinne Cavuoti
Background Information
The Internet and digital/electronic technologies available today provide unprecedented
access to information and support for people coping with illness and loss. Since the
advent of the Internet in 1982, the human–computer interaction (HCI) has redefined
individual relationships, social interaction, and global consciousness. The Internet provides
unlimited access to information on any topic including issues surrounding death that
were once considered taboo. The use of the Internet for death-related information and
education has expanded to include loss-specific multifaceted websites, social networking
for support, interactive counseling, artistic expression, blogging, cyber memorials, and
postmortem continuing bonds. The methods and capabilities of access to the Internet
also continue to advance rapidly. In the past decade, the idea of personal computing has
advanced from the desktop computer to laptop computers, cell phones, tablets, and a
variety of handheld devices. Similarly, the software programs available have expanded
from basic programming to advanced social media, face-to-face interactions, cell phone
apps, live streaming of events, video/digital storytelling along with instantaneous access to
information 24 hours a day, 7 days a week. The newest development of cloud technology
centralizes information. By using cyber storage, cloud technology allows greater sharing
of information at greater speed. The cloud also allows dissemination of information to all
personal devices making information and connectivity completely portable (Huang, Guo,
Xie, & Wu, 2012, p. 39).
The technological advancements of the digital age affect the global perspective and
social construct of dying, death, and bereavement. Before exploring the influence of
technology on grief response and mourning rituals, it’s relevant to examine the social
issues surrounding use of the Internet. Undoubtedly, online access to information and
communication is reshaping the way the world interacts. The 2012 Global Information
Technology Report (GITR): Living in a Hyperconnected World describes the changing
economic opportunities and human interaction as well as the challenges and risks
associated with growing global hyperconnectivity. Hyperconnectivity is described
as having the following attributes: “super-fast connectivity, always on, on the move,
roaming seamlessly from network to network, wherever we go—anywhere, anytime,
via any device” (Biggs, 2012, p. 47). The GITR (Biggs, 2012) acknowledges the constant
need to reassess and redefine the measurement and impact of connectivity to reflect the
changing trends and technologies. Since the 1990s there have been questions regarding
inequitable availability to the Internet and information and communication technologies
(ICTs).
The inequities are attributed to unbalanced access to service and technology along
with limited access to training and education. “Persistent gaps between developed and
developing nations, as well as gaps domestically along socioeconomic, geographic,
educational, racial, and gender lines” initially described the digital divide (Epstein, Nisbet,
& Gillespie, 2011, p. 92). Access remains a primary concern; however, the newest smart
phones and handheld devices provide opportunity to connect to the Internet without
the costly need for home Internet service (Modares, 2011). As availability to connect
changes, focus shifts to address other aspects of the divide. Over the past two decades,
a more complex interpretation of the division has evolved.
Defining the digital divide has created much debate. In addition to understanding
the impact of access, discussion continues regarding age and generational affect on
usage. Prensky (2001) coined the phrase digital native to describe the generation of
students born into the digital age compared with digital immigrants, those adapting to
a new technology (p. 1). This concept of the digital divide has been widely accepted
in both the popular and academic arenas affecting research, funding, and educational
direction (Graham, 2011). Brown and Czerniewicz (2010) caution against presuming
age-related digital literacy to avoid marginalizing those who are labeled immigrants and
promoting those labeled natives to an elevated status. Inherently present in the divide
and labeling is the “apparently insurmountable gap between them [digital natives] and
the less technologically literate older generations” (Bennet & Maton, 2010, p. 322). In
recent research, it is suggested that there is a range of user knowledge and ability that
spans across the age barriers (Bennett & Maton, 2010; Epstein, Nisbet & Gillespie, 2010;
Modares, 2011).
The expansion of the Internet demands the digital divide be understood as both
ability to access and level of user knowledge and skill. There are many methods of access
to the Internet and gradations of user ability that cross the lines of age, education, and
economic status. As we move forward in the digital age, both the technology and the
individual user profile will change. Prensky (2009) reconsidered the label of digital native
suggesting digital wisdom to be more descriptive of the digitally enhanced human
(p. 1). In 1997 Sofka identified the potential of Internet resources in the field of thanatology
describing the new genre as thanatechnology (p. 553). As we consider thanatechnology
Thanatology in the Digital Age 431
today, it is critical that we understand access and availability to the Internet as well as the
digital wisdom of its users.
All cultures have norms of expected behavior in response to dying, death, and
bereavement. These death-related practices are part of each society’s death system
defined by Kastenbaum (1972) as the “sociophysical network by which we mediate and
express our relationship to mortality” (as cited in Sofka, Cupit, & Gilbert, 2012, p. 6).
The system is a means of defining the culturally acknowledged and accepted code of
behavior. When life-altering events occur, these norms dictate the communal response
and support to those experiencing such events (Corr, Nabe, & Corr, 2009). Undoubtedly,
online connectivity is a vital tool in providing and enhancing the availability of individual
and social support. Sofka, Cupit, and Gilbert (2012) describe a thanatechnological death
system enhancing the traditional model to incorporate the impact of the Internet and
HCT technology. The thanatechnological model acknowledges global connectivity and
incorporates a crosscultural approach to defining the death system (p. 10-11). Looking
forward, a thanatechnological model including hyperconnectivity can redefine social norms
in response to death, enhance personal death awareness, and affect global consciousness
regarding death and loss. This chapter will explore the impact of the Internet and HCTs
on the field of thanatology.
Thanatology in the Digital Age
Death-related losses challenge the bereaved to cope with living in a new world. The newly
bereaved often describe their new world as foreign, unpredictable, and threatening. A
death, illness, or traumatic event has shattered their assumptive world.1 Attig (2001)
further defines the experience of loss as diminishing our sense of wholeness and
connection to the people in our lives, our community, and the world at large. A death or
traumatic event may cause an individual to question the meaning of life, the meaning
of the loss, and the meaning of the future. Social connectivity is central to the meaning
of life and plays an important role in meaning reconstruction after loss. In a struggle
to relearn the world and find meaning, the bereaved may alter past connections and
struggle to embrace new, supportive connections. Social interaction and reconnection to
family, friends, and community are consistent staples of support for the bereaved.
The Internet provides access to social connectivity. The connectivity is private,
available 24 hours, enables sharing with others experiencing a similar loss with the
option for anonymity (Gilbert & Horsley, 2011). A bereaved person can assess his or
her individual needs and self-modulate postloss reconnection. Through multifaceted
websites such as Open to Hope, GriefNet, and Compassionate Friends, information and
education is widely available. Individuals are able to navigate through resources privately
as they determine what is helpful to them. These sites contain a broad spectrum of
support options ranging from education to qualified counselors and groups for support.
1 A “conceptual system, developed over time that provides us with expectations about the world and
ourselves” (Janoff-Bulman, 1992, p. 5).
Mourners also have opportunity to hold online conversations connecting with others
experiencing specific types of losses (Horsley & Horsley, 2012, p. 309). Many sites also
include memorials, blogs, and other means for creative expression. All of these options
can be utilized from any device, anywhere, at any time.
Grief and mourning are experienced within a social construct of death. The positive
impact of social support is shown repeatedly across bereavement studies. In his work
with bereaved college students, Balk (2011d) found that grievers look for a safe place
for expression, comfortable situations, and compassionate, supportive people in their
lives. As the bereaved begin to redefine their lives and rebuild a self-narrative, the social
component of their identity is critical to positive reaffirmation of life (Neimeyer, 2010).
Similarly, a study examining Internet support groups for bereaved parents following the
loss of a child to suicide, reports a safe and open place to connect to other parents was a
“quintessentially important element to group membership” (Fieigelman, Gorman, Beal,
& Jordan, 2008, p. 241). Findings from a recent Pew Internet study (Hampton et al.,
2011) indicate people using the Internet regularly report having closer ties, discussion
confidants, and less sense of isolation In addition to the growing number of young people
online, 79% of adults report using the Internet and 59% report using social networking
sites (SNSs). Over half of the SNS users are over the age of 35. Of note, 2012 reports
state 53% in the 65+ age group utilize the Internet and/or e-mail, and 69% reported
owning a mobile phone (Hampton, Goulet, Rainie, & Purcell, 2011).
The explosive use of SNSs expands the capabilities of the Internet in the social support
arena. A SNS is a website designed to facilitate networking usually based on shared
interest, service, or activity. There are many different types of SNSs, each maintaining a
different focus of connection. For example, Facebook and Google+ are social-networking
platforms, LinkedIn is a professional network, Instagram is designed to share photos, and
Pinterest is a virtual pin board to display ideas or interests. Each of these platforms has a
resource within the site for grief education and/or support. The most successful of these
networks is the social-networking site, Facebook. Started in 2004, Facebook has grown
to a worldwide membership of approximately 955 million. Briefly, a Facebook page
consists of a personal profile defined as a “summary of who you are, what you’ve been
doing and your interests” (newsroomfb.com, 2012). A “friend” is someone connected to
another through Facebook, usually an established friend or acquaintance outside of the
SNS. Each Facebook user has a timeline used to “post” comments, photos, or video clips.
Friends can read and respond to material posted on each other’s timelines. If desired,
private messaging can be done through the user’s profile as well. In addition to individual
timelines, businesses or organizations have “pages,” that also allow for interaction for
those who are linked to the page through the “like” option. There are many Facebook
pages devoted to bereavement such as The Grief Toolbox, Grief Journeys, and GriefShare,
where those connected can post and respond to others experiencing loss. In comparison
to other Internet users, those who use Facebook regularly reported higher levels of social
support (Hampton, et al., 2011).
Facebook and other SNSs may create an opportunity to customize support to

accommodate self-identified social needs and technical capabilities. Neimeyer (2003)
warns against a one-size-fits-all type of support suggesting that clinicians direct attention
to accommodating the individual’s personality traits, history, and coping styles. Use of
the Internet early in the grieving process may promote self-determination as the user
explores various support options. The Pew Internet Report: Social Networking and
our Lives (Hampton et al., 2011) is a study comparing SNS users to Internet users not
involved with networking sites. Researchers found Facebook users have a significantly
higher level of social support and are also twice as likely to believe that people can be
trusted. Through Facebook, a user can post information, emotional status, and reach out
to friends at any time for support. The user is eliciting the support, and in response friends
begin a dialog that fosters connection to the bereaved. Each post creates another web
of connection, all initiated by the timeline creator. Similarly, memorials can be created on
a user’s timeline or on a community page to commemorate the deceased. A deceased
user’s timeline can also be a means to communicate to the deceased. Many bereaved SNS
users speak to deceased loved ones through their SNS page, and by doing so, encourage
friends to comment and speak to the deceased as well. Memorials promote a community
of support that can be ongoing in response to users’ needs.
In addition to social networking, Twitter, Yammer, and other social messaging sites
(SMSs), or microblogging, offer a venue to post the “status” of one’s emotions and
perceptions. A status update, also known as “tweeting,” is generally a short statement
(140 characters or less) posted to reflect the user’s mood, an event, or general personal
status. Status reporting forces a succinct snapshot of the emotional status of the writer
or a brief report of information. The update goes to all friends often initiating an instant
response and support. According to recent reports, 15% of adults online use SMSs to
post status updates, up from 11% in 2011 (Hampton, et al., 2011). These forums for
communication and support are becoming added tools for support of the bereaved.
As an example, the case of Barbara illustrates the potential of Facebook, SNSs, and
SMSs to meet the individual needs of the bereaved. Barbara and her husband, Rob, were
married for 22 years and have one child. Barbara is the sole financial support for the
family, and Rob was a stay-at-home father. Rob was diagnosed with brain cancer at age
48 and died 5 years later at the age of 53. Barbara started her Facebook entries on the
day of her husband’s death. Barbara describes herself as a disciplined person and values
her ability to solve problems and remain in control. Barbara’s coping style is an important
element to understanding how she processes her grief. Martin and Doka (2010) describe
coping styles as a “continuum from intuitive to instrumental” (p. 71). Intuitive grievers
cope through affective expression, while instrumental grievers cope using problem-
solving techniques and activity. Barbara is a blended griever, largely instrumental, but
uses affective coping techniques as well. Six weeks after her husband’s death, Barbara
attended a bereavement support group. She described feeling overwhelmed by the
group process and unable to “focus on her own grief story.” Using Facebook offered a
way to express her feelings, pace her reconnection, reach out for support as needed, and
memorialize her husband:
July 31, 2010
Barbara: My husband Rob passed away this morning after a courageous 5-year
battle with brain cancer. He was the love of my life and a wonderful father.
Funeral arrangements will be posted. (35 comments ranging from 7-31, 9:36
a.m. to 8-2, 12:37 p.m.)
The user, Barbara, displayed a picture of the deceased, prior to his illness, as a
memorial. In the same entry, there is an expression of her loss as she begins to explore
the reality of the death. Barbara posted to her timeline within hours of her husband’s
death because she “had to do something.” A second post offered information for friends
regarding funeral arrangements. Both posts reflect her need to remain active and use her
problem-solving coping skills. And, in turn, there are compassionate comments helping
her feel connected and supported.
December 23, 2010
Barbara: Many of you have been there for me this year. Whether a kind word,
a “like,” a message, a visit, coffee, dinner, a movie, a phone call—all of these
expressions of friendship and caring helped me through some very dark days. This
Christmas will be filled with great memories and some sadness, but I know my
angel is smiling down on us. Merry Christmas to all. (24 “likes” and 7 comments
ranging from 12-23, 6:49 p.m. to 12-24, 12:39 p.m.)
The following post was addressed to the deceased with pictures of him over the years
with their child.
October 7, 2011
Barbara: Pics from the first 21 years—our baby is all grown up!
(30 responses and comments)
Of note, in the two entries above, Barbara is posting at Christmas and her daughter’s
birthday. She has self-identified her need for additional support and initiated a chain of
supportive comments and “likes.” She also shared her concept of a continuing bond with
the deceased. The positive response to continuing the relationship allowed her to post
additional pictures and talk about her husband openly on her timeline.
November 20, 2011
Barbara: Today would have been Rob’s 54th birthday. It’s been 16 months since
he left us and the pain of missing my best friend and partner of 24 years just
doesn’t seem to be getting any easier to handle. It feels like yesterday that he was
holding my hand, making me laugh uncontrollably, driving me crazy changing
channels on the remote, telling me the awful dinner I cooked was delicious,
telling me I was the most beautiful woman in the world even when I looked my
worst and marveling over having created such a beautiful and talented daughter.
I know he is in a better place and happy but sometimes it is little consolation for
those he had to leave behind. Happy Birthday in Heaven to the love of my life—
love never dies. Photos of deceased included.
(34 “likes” and 21 comments ranging from 7:54 a.m. to 3:53 p.m.)
The above entry includes several important components of Barbara’s grieving
process. It is a memorial to Rob’s birthday with photos and celebration of his life. In
celebrating, she continues to have him in her life. At this time, Barbara began to use
“love never dies” as a memorial to her husband—the phrase reappearing on additional
posts, pictures, written cards, and status posts. Barbara also acknowledges her struggle
with reconstructing her identity describing who she was as seen through the eyes of
the deceased. In reading this post, one can see the challenges she faces to regain her
sense of identity. The supportive comments encourage her continuing bond with the
deceased and offer additional social connection as others share their bond as well. At
this time, Barbara decided to meet with a bereavement counselor. Jordan and Neimeyer
(2003) posit that in addition to the type of intervention, the timing of grief support may
contribute to successful outcome. The individual’s grieving process may include a “critical
window of time” for optimum response to intervention (p. 774). The interaction on the
Internet allowed Barbara to assess her needs and engage in counseling at a time when
she felt supported and open to counseling.
January 8, 2012
Barbara: Spent several hours today sorting and arranging 7,000 pics on my
computer, and found this very first pic when Rob and I were dating. Love this.
(Attached to first picture of couple together) (25 “likes” and 12 comments).
January 31, 2012
Barbara: Today is a year and a half since Rob had to leave us. Miss his handsome
face every day. (Attached to photo of deceased) (21 “likes” and 12 comments)
March 25, 2012
Barbara: Hosted a widows group of 15 at my house tonight and met some lovely
people that can really relate to each other. The last people didn’t leave until after
midnight so I guess it was a success. (21 “likes” and 2 comments)
May 6, 2012
Barbara: My gardening project for today—think it turned out pretty. (Picture of
gravesite decorated with flowers) (31 “likes” and 4 comments)
The Facebook entries demonstrate Barbara’s positive movement in the grieving
process. She is able to acknowledge her continuing bond with her husband, while moving
forward with her life. In addition, her involvement in the widow’s group enables her to
develop a sense of meaning and build on her new identity.
The Internet continues to grow and provide potential for the bereaved to remain
connected as they cope with the loss of a loved one. The SNS and SMS options can be a
tool for grievers to begin the process of reacclimating to a world without the deceased.
An individual can begin to reconnect with friends online at a comfortable pace as they
explore options and evaluate their need, if any, for further support. Online communication
and resources are shaping the way we respond to loss and socially support the bereaved.
Social media is also utilized for community support. The recent shootings in a movie
theater in Aurora, CO, resulted in 12 deaths and more than 50 seriously injured. There
was an immediate response with posts on Facebook, tweets on Twitter, and sites being
started to support the families. The response has become part of the culture—a way to
connect and support not only an individual or family, but a community as well. Leeat
Granek, a health psychologist studying grief response, states there is a “trend where
people are going online to express grief...it’s the same as getting together with people
when you used to go over to someone’s house with a casserole” (Tucker, 2012, p. 1).
The Internet can also play an important role in the reduction of social isolation and
disenfranchisement. Disenfranchised grief refers to losses that are not socially sanctioned.
This type of grief is not recognized, validated, or publicly mourned. Disenfranchised
grief may leave the bereaved vulnerable for greater difficulty coping with loss and may
contribute to “factors that may facilitate or impair grief resolution” (Doka, 2002, p. 18).
There are three different types of disenfranchised grief: the relationship is not socially
acceptable, the loss is not deemed significant enough to warrant a grief reaction, and
exclusion of the griever. If a person is excluded from the right to grieve, there will be
little or no social recognition of his or her sense of loss or need to mourn (Doka, 2002).
The elderly population is often perceived as “having little comprehension of or reaction
to the death of significant others” (Doka, 2002, p. 13). The elderly are often excluded
from discussions and rituals concerning loss, and this neglect is especially true in cases of
nursing home residents. For those residing in nursing home facilities, bereavement can be
especially troubling because of the residents’ sense of isolation and estrangement from
their former life connections.
The use of digital technology can be a way for the elderly to reconnect to people
and places. A recent news report followed nursing home residents given iPads (tablet
computer devices) with Internet access. Through the iPads, the residents were able to
access information and connect to the outside world (Adlersberg, 2012). For example,
nursing home residents are using web mapping service applications, such as Google
Maps, on their iPads allowing visual access to the places that are familiar. These map
locations can be connected to a television screen in the nursing home facility. “A few taps
on the screen and a resident can be right back home in a few seconds” (Adlersberg, 2012,
p. 1). Nursing home staff reports using the iPad reanimates residents who were passive
and uninvolved (Adlersberg, 2012). One resident reported that using the iPad to connect
to the Internet allowed her to shop online with her family and plan a Mother’s Day
brunch. This involvement in the family planning of an important day made the resident
feel like part of the family even though she couldn’t be physically with them. Referring
to re-involvement using the computer, one resident stated, “My family asks my opinions,
now they ask me questions; they respect me in a different way” (Aldersberg, 2012, p. 1).
The use of the Internet to stay connected to family and friends can be an essential tool in
decreasing residents’ isolation and loneliness, especially during bereavement.
Pet loss has also been identified as a form of disenfranchised loss. Many pet owners
often feel embarrassed and isolated by their loss. There are many websites and Internet
pages such as ASPCA (aspca.org) and the Association for Pet Loss and Bereavement (aplb.
org) that offer information and support. In addition there are virtual pet cemeteries and
blogs that provide posting and creative opportunities for bereaved pet owners. Through
the Internet, they are able to locate other bereaved pet owners to share their experiences
diminishing loneliness, isolation, and despair.
The Internet and ICTs may also affect the global consciousness regarding death,
dying, and bereavement. Through the Internet, we are exposed to events unfolding in
real time. Videos, photos, and personal accounts of catastrophic disaster, pandemics, and
death-related events may inspire global unification and encourage immediate response.
During a disaster, the inability to communicate and share information is one of the
greatest problems. ICTs offer a means for more effective communication and organization
as people join together to take action. The social media’s representation of death-related
events also affects compassion towards grievers.
What are the factors that affect a global response to the pain and suffering of other
human beings? The Oxford Dictionary defines empathy as having the ability “to share
and understand the feelings of another person.” Compassion is defined as “concern for
the suffering of others” (Oxforddictionaries.com). In order to feel compassion for another,
people must be able to connect and relate to the experience. Often, the failure of people
to respond to the pain of others is directly related to their inability to understand and
relate on a variety of social levels (Cikara, Bruneau, & Saxe, 2011). The Internet includes
many different venues that foster empathy and a collective response. The social media
integrates information across the world sharing live coverage, humanitarian efforts, and
personal accounts. In addition video-sharing sites, such as YouTube and photo-sharing
sites, such as Instragram have a powerful impact on empathic response.
Laituri and Kodrich (2008) have identified the following characteristics of Internet
technology and communication that pertain to disasters and death-related experiences.
Online media facilitates global communication, conveys a sense of urgency, enhances
dissemination of information, provides instantaneous information, and fosters a sense
of global community. The online disaster response community then unites to provide
financial support; public creation of blogs, pictures, and video recordings; and message
boards providing information for survivors. Informal social networks of communication
develop providing firsthand accounts of death-related experiences and disasters. Local
victims of an event often volunteer to collect and distribute data in text, blogs, videos,
pictures, maps, and chat rooms (Laituri & Kodrich, 2008).
Images of traumatic world events such as the 2001 terrorist attacks on the World
Trade Center in New York, Hurricane Katrina in New Orleans, and the earthquake in
Haiti, provide opportunity for global communities to relate to the experience of others,
express empathy for victims, and respond. Survivors also have the opportunity to express
their grief by telling the story of their loss.
In 2010, Haiti was devastated by a 7.0 earthquake that resulted in 316,000 deaths,
300,000 people injured, and 1 million people left homeless. According to the U.N. News
Service, the international community united in an outpouring of support to assist the
survivors and their families. Much of the support was orchestrated through the Internet.
As an example of online disaster support, the Red Cross continues relief efforts and
communication for those affected by the 2010 earthquake. The site provides links to
Facebook, YouTube, LinkedIn, Twitter, and other social networks to allow survivors to
continue to talk online about their lives and experiences in relation to the earthquake.
The Red Cross site encourages continued connection for those affected by the disaster as
a source of support across the globe (redcross.org.uk).
The Internet and online communication also has the capacity to raise awareness
and foster unity on a global level. After the Sept. 11, 2001 attacks on the World Trade
Center, there was a response of support and empathy reflected in e-mail messages across
the world. In addition, the online reporting, videos, etc., began a global dialog that
reflected questions about mortality, terrorism, and global connectivity. The IIE Solutions
headquarters, which hosts social community websites, provided a forum for international
comments. A quote from Germany from the REFA staff (World Confederation of
Productivity Science) stated:
The German society is shocked by the brutal murdering of innocent people. The
families who were unbelievably hit will be in our minds for a long time. REFA staff
and members will do everything that is in our hands to contribute to connecting
people and cultures to benefit each other (http://solutions.iienet.org p. 33).
A member of the IAI Technical Information Center in Israel stated:
My colleagues and I are shocked beyond belief—this despite the fact that as
Israelis we have become accustomed to living daily beneath the threat of terror
against innocents. Accustomed but not inured (http://solutions.iienet.org p. 32).
Another quote from South Africa stated:
I was not directly affected by the events but was totally shocked by what I saw.
My sympathies go out to the innocent people who were involved, and we will
continue to pray that life will return to normal for all of you in the United States
(http://solutions.iienet.org, p. 33).
In addition to the support at the time of the 9/11 attacks, the Internet continues
to be an important resource for the survivors and victims’ family members. There are
Internet sites such as voicesofseptember11.org dedicated to providing support for those

affected by the 9/11 event. This site memorializes the victims through the 9/11 Living
Memorial Project described as an “online interactive tribute commemorating the lives
and preserving the stories of 9/11/2001” (voicesofseptember11.org). Included on
this site is a short documentary film, Voices. The film contains interviews with family
members of 9/11 victims and tells the story of their unified support and resilience. This
site is also linked to Facebook and Twitter allowing the support to be easily accessed from
any device and portable.
These are examples of how online communication surrounding catastrophic world
events can shape perspective and response to death-related experiences. The Internet
provides the opportunity for the world to witness events in real time as well as create a
global dialog in response. This type of interaction may play a role in creating a broader
sense of empathy leading to greater compassion worldwide.
Although the social support is often positive, there can be negative aspects to social
media support. For some grievers, the lack of privacy may create further distress as their
emotions online can often be made public leaving them feeling exposed and violated.
There is also the potential for disturbing online behavior. Some posts may be insensitive or
offensive to the bereaved. Overexposure of a loss can also be upsetting to the survivors.
After the shooting at Virginia Tech in April 2007, a professor at the university stated,
Our tragedy had become a product to be sold, with a slick computer-graphic
lead-in on every channel, and, of course, a point of leverage for those arguing
for either greater or lesser availability of guns (Wittkower, 2012, p. 2).
These unintended consequences must be considered when using the Internet for
support or education pertaining to death, dying, and grieving.
The Internet continues to enhance, modify, and challenge the social mores surrounding
dying, death, and bereavement. As we explore the impact of thanatechnology on grief
and mourning response, we must remain attentive to user knowledge and ability as well
as Internet availability and access. The online response to loss and grief is evident on an
individual, community, and global level. In fact, the first response to a death or traumatic
event often appears online through messaging, social media, video recording, etc. The
use of social media has become an important aspect of the grief response. The social
media encourages and supports self-determination on an individual level and engages
people on a community/global level. Reviewing the impact of the Internet after the
terrorist attacks on 9/11, De Vries and Moldaw (2012) suggest that the Internet has the
power to “extend the boundaries of who is allowed or expected to participate in the
mourning process and alter the face and shape that mourning assumes” (p. 136). There
is a wealth of thanatological information, education, and support available through the
Internet. The growing methods and opportunity to connect to others is changing how we
respond and utilize support. The challenge is to utilize the growing hyperconnectivity to
best help those coping with dying, death, and bereavement.
441
ADEC Code of Ethics
Introduction (1)
Membership in ADEC commits members and student affiliates to comply with the
standards of the ADEC Code of Ethics. A lack of awareness or a misunderstanding of an
Ethical Standard is not itself a defense to a charge of unethical conduct.
The Preface and Basic Tenets are explicative and provide aspirational goals to guide
thanatologists toward the highest ideals. Although the Preface and Basic Tenets are not
themselves enforceable rules they should be considered by thanatologists in arriving at
an ethical course of action. Most of the Ethical Standards are written broadly, in order
to apply to thanatologists in varied roles, although the application of an Ethical Standard
may vary depending on the context. The Ethical Standards are not exhaustive. The fact
that a given conduct is not specifically addressed by an Ethical Standard does not mean
that it is necessarily either ethical or unethical. The Ethics Code applies across a variety
of contexts, whether in person or by postal service, telephone, Internet, and/or other
electronic transmissions.
In the process of making decisions regarding their professional behavior, thanatologists
must consider this Code of Ethics in addition to the applicable laws and professional board
regulations that they are subject to. If this Code of Ethics establishes a higher standard
of conduct than is required by law or other codes, thanatologists must meet the higher
ethical standard. If thanatologists’ ethical responsibilities conflict with law, regulations,
practice standards, or other governing legal authority, thanatologists make known their
commitment to this Code of Ethics and take steps to resolve the conflict in a responsible
manner.
Preface
The Association for Death Education and Counseling (herein referred to as the
Association), founded in 1976, is an international, professional organization dedicated to
promoting excellence in death education, care of the dying, and bereavement counseling
and support. Based on quality research and theory, the Association provides information,
support, and resources to its multicultural, multidisciplinary membership, and, through it,
to the public.
The Association envisions a world in which dying, death, and bereavement are
recognized as fundamental and significant aspects of the human experience. Therefore,
the Association, ever committed to being on the forefront of thanatology, provides a
home for professionals from diverse backgrounds to advance the body of knowledge and
to promote practical applications of research and theory.
Recognizing the impact that death education and/or grief counseling can have upon
the lives and well-being of people, the following is the Code of Ethics of the Association
for Death Education and Counseling, adopted by the membership of the Association, and
subscribed to by all who hold membership in the Association.
Basic Tenets
1. Death education and grief counseling are based upon a thorough knowledge
of valid death-related data, methodology, and theory rather than stereotypes
or untested hypotheses. Thus, the practice of death education and/or grief
counseling requires knowledge of current thanatological literature.
2. The member strives to understand his or her death-related feelings and
experiences and the ways in which these may impact his or her thinking and
work in the field.
3. The member takes care to know the student or client. Good education and
counseling are based upon an understanding of, and a respect for, the student’s
or client’s cultural background, developmental status, perceptions, and other
individual differences and needs.
4. The member neither exploits nor deceives others, but strives to improve the
health and well-being of the individual and society. Fees, if charged, conform to
an available schedule, consistent with comparable services. Research conforms
to standards for human participation (as the Commission on Rights of Human
Subjects has currently established).
5. The member serves in an advocacy role to assist the individual or society to cope
with death-related issues. The member intervenes to prevent exploitation of the
student or client and is obligated: (a) to be available to the student or client; and
(b) to educate or counsel regarding rights, responsibilities and options with their
possible consequences.
6. The member strives to present various views of a death-related question,
indicating the member’s own values if appropriate, and respecting the student’s
or client’s choice among alternatives.
7. Recognizing that conflicts over the needs of the individual, family, institution,
community, or society might arise, the member includes in his or her ongoing
relationship, when appropriate, discussion of confidentiality and primary
responsibility to the individual, to the family, to the institution, to the community,
or to society.
8. The member recognizes his or her own limitations in meeting individual needs,
and has available adequate consultation and referral resources. The member
assesses the efficacy of his or her referral system by obtaining feedback from the
referee, the referral resource, and knowledgeable consultants.
9. The member works to promote greater understanding among lay persons and
professionals of dying and death so that each member of society can achieve a
more satisfying life and personal acceptance of death.
ADEC Code of Ethics 443
Ethical Standards
I. General Conduct
The Association is committed to defining and maintaining high standards of professional
service and conduct. Members are responsible for keeping the Association informed
about developments of new knowledge and improvements in skill development
Members continually strive to improve themselves, their professions, and the
Association through diligent efforts to improve professional practices, services, teaching,
research, and the preparation of professionals.
Ethical behavior among members and their associates, both members and
nonmembers, is expected at all times. When a member becomes aware of another
person’s violation of ethical standards, the member attempts to rectify the situation. If
the situation continues without a satisfactory ethical resolution, the member pursues the
issue through appropriate channels.
D. Members provide their professional services to anyone regardless of race,
religion, gender, sexual orientation, socio-economic status, or choice of lifestyle.
When the member cannot render service, the member makes an appropriate
referral.
E. Members do not use their professional relationships to further their personal,
political, religious, or business interests.
F. Sexual relationships with clients, students, and/or their significant others is
unethical.
G. Members refrain from multiple relationships if (1) such relationships could
reasonably be expected to impair the objectivity, competence, or effectiveness
of the member in performing his or her responsibilities; or if (2) such relationships
otherwise risk exploitation or harm to the person(s) with whom the professional
relationship exists or formerly existed.
H. Members avoid conflicts of interest that interfere with professional discretion
and impartial judgment. If a real or potential conflict of interest arises, members
take reasonable steps to resolve the issue in a manner that reflects the best
interests of the person(s) served.
I. Members neither offer, seek, nor accept payment of any kind for referrals.
II. Competence
A. Members continually strive to attain higher levels of competence. Each member
is obliged to pursue continuing education and professional growth in all possible
and appropriate ways, including participating in the affairs and activities of the
Association and pursuing learning activities that lead to professional certification
and licensure when available.
B. When called upon to deliver professional services, members accept only those
positions and assignments for which they are professionally qualified.
C. Members are aware of the limits and boundaries of their professional competence
and in no way represent themselves as having qualifications beyond those which
they possess. Each member is responsible for correcting any misrepresentation
other persons may make regarding that member’s professional qualifications.
D. Members provide only those services and utilize only those techniques for which
their training and experience qualifies them.
E. Members do not engage in professional activities when it is likely that personal
problems or impairment may prevent them from performing such activities in a
competent manner. In such situations, members seek appropriate professional
consultation and assistance toward resolution of the situation. If the member
is unable or unwilling to remedy personal conditions that may jeopardize the
welfare of the member’s clients, it is ethical for another member or other
professional person to intercede and assist the member in taking remedial action.
III. Responsibilities to Those Served
A. The primary obligations of members are to respect the integrity of and to
promote the welfare of clients and students.
B. When members believe that a client’s or student’s condition indicates that there
is a foreseeable, serious, and imminent danger to the client, to the student,
or to others, members take immediate, reasonable, and prudent action and/
or inform appropriate authorities in accordance with applicable legal mandates.
Consultation with other knowledgeable professionals is highly encouraged.
C. Members are free to consult with other professionals about clients and/or students
provided that the consultation does not place the consultant in a position of
conflict of interest and providing that all concerns of privacy, informed consent,
and confidentiality are met appropriately.
D. In providing professional services to clients or students, members neither violate
nor diminish their legal and civil rights.
E. Members who offer services, products or information via electronic transmission
inform their clients and students of the risks to privacy and the limits of
confidentiality.
F. Members take reasonable precautions to protect the confidentiality of clients/
students in the event of the member’s termination of practice, incapacitation or
death. (1) Members insure confidentiality of client/student records; (2) Members
either transfer client/student records to another professional, or assure secure
storage of the records; (3) Clients/students or their legal guardians are informed
about the termination of practice and about the transfer/storage of records.
IV. Responsibility to Others
A. Ethical, respectful and considerate behavior is expected of members at all times
among and between professional associates, whether they are members or
nonmembers.
B. Members respect the confidences colleagues share with them during the course
of their professional relationships and transactions unless confidences transgress
legal and ethical mandates to disclose.
C. Members who have responsibility for employing and/or evaluating the perfor-
mance and achievements of others fulfill those responsibilities in a timely, fair,
considerate, and equitable manner on the basis of clearly enunciated criteria.
Members share their evaluation of a person with the person evaluated.
E. Members maintain familiarity with the network of professional and self-help
systems in the community and assist clients to avail themselves of those resources
as appropriate.
F. Members know and take into account the traditions and practices of other
professional groups with whom they work and cooperate fully with those groups.
V. Responsibility to Employers
A. Members clarify and establish interpersonal relations and working agreements
with supervisors and subordinates especially in matters of professional relation-
ships, confidentiality, distinctions between public and private material, mainte-
nance and use of recorded information, and work load accountability.
B. Members inform employers of conditions that may limit their effectiveness.
C. Members submit regularly to professional review and evaluation.
D. Members accept only those assignments that are within their competency.
E. Members are responsible for on-going continuing education and development
of their expertise and the expertise of their subordinates. Continuing Education
and staff development should address current knowledge and emerging devel-
opments in the field.
F. Members work to improve the employer’s policies, procedures, and effectiveness
of services.
G. Members use employer resources only for purposes for which they were
intended.
H. Members neither engage in nor condone illegal or discriminatory practices.
I. When employer demands require members to violate ethical principles, members
clarify the nature of the conflict between the demands and the principles, inform
all parties of members’ ethical responsibilities, and take appropriate action
consistent with prevailing ethical standards.
VII. Responsibility to Society
A. Members work to prevent and to eliminate discrimination against any person
or group on the basis of age, color, race, gender, sexual orientation, lifestyle,
religion, national origin, marital status, political belief, or mental or physical
disability.
B. Members act to ensure that all persons whom they serve have access to the
resources, services, and opportunities they require.
C. Members clarify whether they speak as individuals or as representatives of an

organization.
D. Members provide their appropriate professional services in public emergencies.
E. Members interpret and share with the public their professional expertise
regarding issues affecting the welfare of the society.
VIII. Confidentiality and Privacy
A. Members regard as confidential all information arising in the course of the
professional relationship. Consideration for the client welfare is an abiding
concern of members.
B. Members inform clients about the limits of confidentiality in a given situation.
C. Members obtain informed client consent prior to recording or allowing third
party observation of their activities. Members inform clients about the purpose
of recording/observing, who will have access to the recording and under what
conditions, and the disposition of the recording. Client consent for one purpose
is not valid for another or different purpose.
D. Members shall disclose confidential information when members believe there is
clear and imminent danger to the client or to others, and that the danger can
be alleviated or avoided by disclosing the information. In such circumstances,
members are encouraged to consult with other knowledgeable professionals.
E. When members disclose confidential information without client consent, they do
so only with appropriate others and only for compelling reasons.
F. Members safeguard written and recorded information about clients and are
alert to potential threats to confidentiality in duplications processes, in use of
computer equipment, and in electronic mail and facsimile transmission.
G. In those rare instances when members may disclose information, they disclose
only that which is relevant within the context of the incident.
H. Members adequately disguise clinical and other material they use in teaching,
writing, and public speaking in order to preserve client anonymity; an alternative
is to obtain adequate prior client consent.
I. Members who have professional relationships with minor children assure them
proper confidentiality. Members exercise careful judgment and respect applicable
laws when discussing those children with their parents or guardians.
J. Client information received in confidence by one agent or agency is not for-
warded to another without the client’s written consent.
K. Members take into account an individual’s capacity to give consent or to refuse
care/treatment. Members thoroughly and scrupulously assess the client’s relevant
abilities and capacity to make decisions. Members exercise careful judgment
regarding confidentiality and privacy regarding those individuals who fall below
the threshold of decisional capacity.
Death Educators and Trainers

This section addresses those thanatologists who, on either a full-time or part-time or an
occasional basis, function as a death educator or provide death education or training in
any way to others.
DE-I. Responsibility to Others
A. Members in charge of programs establish learning experiences that integrate
academic study and supervised practice. Such programs develop student skill,
knowledge, and self-understanding.
B. Members orient students to program or learning expectations, basic skills devel-
opment, and, when appropriate, to employment prospects prior to admission.
C. When a program or learning experience has a focus upon self-disclosure, self-
understanding or growth, members ensure that potential students are made
aware of this fact before they enter the program or begin the experience.
D. Members who employ exercises and simulations which draw upon participant
thoughts, feelings, and memories must ensure that appropriate professional
assistance is available to participants during and following those learning
experiences.
E. When a student is expected to disclose relatively intimate or personal information
about themselves as part of their learning experience, educators and supervisors
shall not evaluate the student based upon such self-disclosure. The degree of
self-disclosure will be respected without coercion or punitive measures.
F. When a program or learning experience has a focus upon self-disclosure, self-
understanding or growth, members ensure the confidentiality and privacy of
information shared in this setting.
G. Members make students aware of professional ethical responsibilities and
standards.
H. When members function as educators, they maintain high standards of scholar-
ship and objectivity. Members present information fully and accurately, and they
provide appropriate recognition of alternative viewpoints.
DE-II. Standards of Professional Competence
A. Members assuming educative functions do so within their professional compe-
tence.
B. Members teach only in areas in which they have received professional preparation.
C. Members engage in continuous study and professional development in order
to insure that they provide instruction based on the most current information
available in the profession.
D. Members accurately cite or credit those authors and researchers whose work the
member is presenting.
Grief Counselors/Therapists
This section refers to those thanatologists who, either on a full time or part-time or an
occasional basis, function as grief counselors/therapists providing thanatology-related
clinical services to others.
GC-I. Responsibility to Those Served
A. When members receive a referral, they actively seek all available, pertinent
information from the client, legal guardian, or referral source, with appropriate
written consent.
B. When a member is contacted by an individual who is receiving services from
another agency or colleague, the member carefully considers the client’s needs
before agreeing to provide services. Members should (1) discuss with potential
clients the nature of the client’s current relationship with the other service
provider and the possible risks and benefits of entering into a new professional
relationship; (2) seek consent for exchange of information when it would be
beneficial to the client. All resources utilized by the client should be documented
appropriately.
C. Before members enter into professional relationships with potential clients,
members inform clients/legal guardians about their expertise, techniques and
other practices that may be used and that may affect the client’s well being.
Members clarify client/legal guardian goals and the purpose and expectations of
the services they provide.
D. Clients/legal guardians are informed verbally and in writing at the time of the
first interview about the limits of confidentiality as stipulated by law, regulation,
or organizational process.
E. Prior to initiation of services, members notify clients/legal guardians of all financial
responsibilities assumed by client/guardian or counselor. Fees for services, and
any changes, must be identified and agreed to prior to services rendered. As a
portion of their professional activities, members are encouraged to provide pro-
bono or reduced fees to clients who experience financial constraints/difficulties.
F. Members make appointments with relatives or collateral of clients only when
clients have given their permission, unless an emergent situation requires another
course of action. In this case, members consider legal and ethical implications
and seek consultation before proceeding.
G. When members agree to provide services to clients at the requests of third
parties, the nature of each of the relationships of the involved parties is clarified,
accepted by all, and documented as such. Any limitations to confidentiality will
be noted as well.
H. Members keep records and other information related to clients confidential for
at least the number of years determined by laws in the member’s state, province
or country of practice.
I. Members should seek professional consultation whenever such consultation is in

the best interests of those served.
J. If members determine that they are unable, or no longer capable of providing
a particular service, they carefully prepare the client and assist in making
appropriate arrangements for continuing care when necessary. The client’s well
being is of primary concern; therefore, every attempt is made to ensure that the
client does not feel abandoned and that possible adverse effects are minimized.
All efforts to this end should be documented.
GC-III. Responsibility to Others
A. Grief counselors/therapists do not solicit the clients of others.
B. Grief counselors/therapists fully cooperate with professionals who treat former
clients of that provider.
C. Grief counselors/therapists are encouraged to offer their expertise in the
geographical community in which they live and to take part in collaboration and
interdisciplinary teamwork when working in a hospital or school environment.
Researchers in Thanatology(2)
This section refers to those thanatologists who, either on a full time, part-time or an
occasional basis, function as researchers in thanatology-related subject areas.
RT- I. Responsibility to Institutions
A. When institutional approval is required, members provide accurate information
about their research proposals and obtain approval prior to conducting the
research.
B. Members conduct research in accordance with approved research protocol.
RT-II. Responsibility to Research Participants
A. When obtaining informed consent, members inform participants about the
purpose of the research, expected duration, and procedures; and about their
right to decline to participate and to withdraw from the research study without
penalty.
B. When members conduct research with clients/patients, students, or subordinates
as participants, members take steps to protect the prospective participants from
adverse consequences of declining or withdrawing from participation.
C. When research participation is a course requirement or an opportunity for extra
credit, the prospective participant is given the choice of equitable alternative
activities.
D. Members may dispense with informed consent only (1) where research would
not reasonably be assumed to create distress or harm and involves (a) the study
of normal educational practices, curricula, or classroom management methods
conducted in educational settings; (b) the use of anonymous questionnaires,
naturalistic observations, or archival research for which disclosure of responses
would not place participants at risk of criminal or civil liability or damage their
financial standing, employability, or reputation, and confidentiality is protected;
or (c) the study of factors related to job or organization effectiveness conducted
in organizational settings for which there is no risk to participants’ employability,
and confidentiality is protected or (2) where otherwise permitted by law or
federal or institutional regulations.
E. Members provide a prompt opportunity for participants to obtain appropriate
information about the nature, results, and conclusions of the research, and they
take reasonable steps to correct any misconceptions that participants may have
of which the members are aware. If scientific or humane values justify delaying
or withholding this information, members take reasonable measures to reduce
the risk of harm.
F. When members become aware that research procedures have harmed a
participant, they take reasonable steps to minimize the harm.
RT-III. Responsibility in Reporting and Publishing Data
A. Members do not fabricate data.
B. If members discover significant errors in their published data, they take reason-
able steps to correct such errors in a correction, retraction, erratum, or other
appropriate publication means.
C. Members do not present portions of another’s work or data as their own, even
if the other work or data source is cited occasionally.
D. Members take responsibility and credit, including authorship credit, only for work
they have actually performed or to which they have substantially contributed
(1) Principal authorship and other publication credits accurately reflect the relative
scientific or professional contributions of the individuals involved, regardless
of their relative status. Mere possession of an institutional position, such as
department chair, does not justify authorship credit. Minor contributions to the
research or to the writing for publications are acknowledged appropriately, such
as in footnotes or in an introductory statement.
(2) Except under exceptional circumstances, a student is listed as principal author
on any multiple-authored article that is substantially based on the student’s
research. Faculty advisors discuss publication credit with students as early as
feasible and throughout the research and publication process as appropriate.
E. Members who review material submitted for presentation, publication, grant, or
research proposal review respect the confidentiality of and the proprietary rights
in such information of those who submitted it.
1. Portions of this Code of Ethics are based on the “Ethical Principles of Psychologists and Code of Conduct”
(American Psychologist, 2002, 57, 1060-1073), which is the copyrighted property of the American
Psychological Association. While the American Psychological Association has given permission to ADEC
to utilize the APA Code of Ethics, APA has in no way advised, assisted, or encouraged ADEC to utilize the
APA Code of Ethics. APA is in no way responsible for ADEC’s decision to utilize the APA Code of Ethics, or
for any actions or other consequences resulting from such use by ADEC.
2. Ibid.
451
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519
Index of Key Terms

Assessment and Intervention development and life span issues
(see also Treatment) developmental evaluation 240
alternative therapies defined 19 developmental history 228
art therapy 250 developmental play assessments 228
assessment and intervention multi-dimensional aspects 81
adolescents 240 psychosocial stages 81
internalizing disorders 241 Diagnostic and Statistical Manual of Mental
adults Disorders (DSM) 145, 194, 220, 263, 268,
young and middle aged adults 241 312-313
insecure attachment 241 dual process model of coping with bereavement
substance abuse 241 222-226, 235
elderly 241 ecological niche 197
depression symptoms 241 ecosystemic approaches to practice 195
suicide risks 242 efficacy of intervention
children complicated grief and evidence of efficacy of
Bo’s Place 243 interventions 235
Individual Play Genogram 240 controlled evaluations of grief therapy for
Resilience Trajectory 239 children 236
Suicide survivors efficiency of treatment models 264
The Magic Key 240 evidence of efficacy of interventions 237, 264
traumatic grief 243 ethnographic cultural approach 204
attachment theory 247 evidence based practice 355
bereavement counseling controversies 264 evidence based programs 222
bereavement support (see also Support) 242 excess death 195
childhood bereavement centers 230 Family Bereavement Program 236, 249, 287
bibliotherapy 249, 360-361 family meaning making 236, 246, 370
biopsychosocial functioning 222, 264-267 family needs assessment 248
challenges to grief support strategies 397 family support 239
challenges to work model 221 Family Systems Theory 247, 250
clinical assessment of bereavement response Family therapy
227-9 Cognitive Behavioral Family Therapy 247
collaborative practice models 200 Experiential Family Therapy 247, 250
complementary therapies defined 19 Narrative Therapy 247
complicated grief (CG) 235 Psychoanalytic Family Therapy 247
continuing bonds 221, 247, 267 Solution-Focused Brief Therapy 247
crisis support teams 231 Structural Family Therapy 247
Critical Incident Stress Debriefing genograms 172
(see also Support) 230-231 gender differences and assessment 236
Critical Incident Stress Management 230-231 grief work 136-137, 141, 220
Cruse 219 grief therapy vs. grief counseling 146-147
cultural differences and assessment 246 healthy grieving 227
culturally based ecosystemic frameworks 196 holistic approaches 78
culturally competent care 196 holistic care 217
culturally meaningful assessment and illness narratives 202
intervention 199 implications for care
culturally meaningful practice 198-200 adolescents 29, 228
culturally sensitive care for dying children and adults 31
their families 205-206 children 27, 231, 316
death education as intervention 241-242 Integration of Stressful Life Experiences Scale
de-briefing 397 (ISLES) 227
decathexis 194, 220-221 Internal Family Systems 247
Assessment and Intervention (continued) storytelling strategies 307
International Statistical Classification of Diseases systematic approach to family grief 245
and Related Health Problems (ICD) 312 task models of grief 221
interventions for bereavement 229 task-oriented model of development 25-26
cognitive bereavement therapy (CBT) 235, 283 two track model of bereavement 222, 265-266
complicated grief and interventions (CGT) 235 trauma-focused treatment approach 323
evidence based practices 197, 234, 271 treatment focus 271
eye movement desensitization and reprocessing working models of relationships 201
(EMDR) 232 Attachment Theory
family bereavement programs 247 attachment bonds 162
family focused grief therapy 247 continuing bonds 135, 140-141, 163, 221, 247,
meaning-making approaches 222, 235-236, 267
246 (see also see Assessment and Intervention and
online support 231 Trauma)
peer groups 361 Bereavement
support group model (see also Support) 230 adjustment of children 157
knowledge-based culturally sensitive practice 197 ambiguous loss 161, 176
loss orientation 222 bereavement and spirituality 209
making better use of chaplains 71 bereavement customs 310
measurement of bereavement difficulties 264 bereavement defined 135
models of culturally competent practice 197 bereavement following SIDS death 165
multi-cultural counseling competencies 202 bereavement leave 189
normal grief 220 bereavement outcomes over time 154
normative patterns of grief 245 bereavement outcome research 226-227
organized professional caregiving systems 213 bereavement phases 159
pathologized grief response 220 bereavement trajectories 158
patient centered cultural approach 203 childhood bereavement 148, 153
posttraumatic stress disorder 224, 241 communication 154
projective drawing 307 facilitating continuing bonds 154
prolonged grief disorder (PGD) 145, 224, 312 sense making 154
psychotherapy defined 271 childhood bereavement studies discrepancies 150
public health perspective 204 childhood grief myths 150
reconstruction approach to grief 222 childhood traumatic grief (CTG) 243, 306-307
reflexivity 201 completion 366
reliability of assessment instruments (PTSD) complicated 227
313-314 death of a spouse (see also Death and Dying)
risk factors and assessment methods 225-226 166-167
restoration orientation 222 age differences and spousal bereavement
SAFE-R 243 166-167
self narratives 226 differences, 166-167, 176-177, 246
school age children 228 mortality statistics 167-168
self-report instruments signs of vulnerability to spousal bereavement
Collett-Lester Fear of Death Scale 420 166
Core Bereavement Items 226 dynamic or functional elements of bereavement
Death Anxiety Scale 396, 420 144
Grief Evaluation Measure (GEM) 226 Employment Relations Act 1999 189
Grief Experience Inventory 226, 396, 420 euphemisms 151-152
Hogan Grief Reaction Checklist 226, 396, 420 getting through 136
Inventory of Complicated Grief (ICG) 226 Harvard Childhood Bereavement Study 150
Inventory of Daily Widowed Life 226 healing 136
Texas Revised Inventory of Grief 226 holistic template 157-158
The Threat Index: Provided Forms 396, 420 interpersonal responses to bereavement 157
Two Task Bereavement Questionnaire 226-227 manifestations of adolescent bereavement
social constructionist approach 204 152-153
specialized bereavement measures 226 manifestations of childhood bereavement
spiritual assessment 66-68 149-150
spiritual care 67 multidimensional experience of loss 271
spiritual histories 205 negative outcomes (see also coping) 176, 390
stages of grief 136-137, 221 pathological bereavement 220, 313
Index of Key Terms 521
Bereavement (continued) coping strategies 153

physical response to bereavement 157 and bereaved children 153
immune system 157 discrepant coping styles 176
paid bereavement leave globally 189 dual process model (see also Assessment and
positive outcomes (see also Coping) 177 Intervention and Mourning) 146, 222-226, 235
post-death bereavement 139 empirical foundations of the new pessimism 267
primary losses 135 family level variables family strategies for coping
recovery 136 with trauma (see also Trauma) 285
resolution 136 legacy of coping 154
“science” of bereavement 267 loss, coping with 138, 140, 176, 238, 240, 264,
secondary losses 135, 177 398
significance of the continuing impact of loss and Moos & Schaefer model of coping 160
bereavement 268-270 negative outcomes (see also Assessment and
structural elements of bereavement 144 Intervention and Bereavement) 176, 225, 390
trajectory of bereavement 158 positive outcomes (see also Assessment and
tasks of mourning 21 Intervention and Bereavement) 177, 234,
U.S. Family and Medical Leave Act (FMLA) 189 resilience 141, 158, 169, 175, 197, 210, 236, 308
Biomedical Ethical Models (see also Treatment) children and adolescents 154
biomedical ethics 92 self care 408
biomedical model 6-7 self-efficacy 162
core bioethical concepts 44 sense of control 212
ethical principles 46 strategies for avoiding compassion fatigue 408
ethics defined 43-44 strategies for managing stress and decreasing
five moral ideals 46 burnout 408
Hippocratic Oath 45 tasks with coping with dying 21
John Stuart Mill on liberty 45 Culture
medicalization of bereavement 199 African Americans 5, 55, 68, 326, 327
ten moral rules 46 American Indians (see also Native Americans) 55
Utilitarianism 45 Asian Americans 56
Western medical ethical principles 54 Australian Aboriginals 309, 364
Cognitive Impairment and Aging bicultural identity 329
Alzheimer’s disease 161, 411 collaborative approaches 200
dementia 74, 85-86 components of cultural competence 204
Constructivism culture defined 3, 53, 121
assumptions about the world 128, 294 cultural attitudes toward the deceased 123
assumptive world 139, 210-211, 228, 278 cultural and ecosystemic approach 195
benefit finding 140 cultural competence 224, 323-324
collaborative death narratives in the family cultural conflict with PSDA 54
370-371 cultural differences and religion 131
meaning connection 211 cultural differences in dealing with the dying
meaning construction 143, 159, 160, 121-122
meaning making 11, 166, 267, 367 cultural differences in emotionality 122
meaning reconstruction 139-140 cultural differences in who is family 122
narrative or constructivist theories 23, 294-295 cultural dissent 327
realization 137 cultural distinctiveness 323
search for meaning 64 cultural diversity 259, 279, 331
sense making 140 cultural factors 3
social construction of reality 345 communication of end-of-life issues 4, 58
transactional nature of mourning 223 decision making 94
working models of relationships 201 who should care for the dying person 5
Coping cultural identity 258
adaptive tasks 154 cultural understanding model 61-62
adolescent coping related themes 153 cultural worldview 295
utilizing the Internet 153-154 culture and what we need to learn in order
Changing Lives of Older Couples (CLOC) 168 to help 125
coping and aging 160 dispedida 327
cognitive-based coping models 160 distrust 5
cognitive theories of coping 162 dominant cultural resources, beliefs and practices
coping and developmental change 153 199
Culture (continued) communicable diseases 6
ecosystemic dimensions of culture 198 communication 4, 58
el Día de los Muertos 326 cryonics 188
embeddedness in culture 201 cultural factors 3
Hispanic Americans 56 death and the afterlife 14-15
impact of culture on end-of-life care attitudes death anxiety 5-6, 27-29, 30, 79, 212, 350, 353,
55-57 365
interdependent dimensions of culture 201 death anxiety and age differences 30
Irish 111 death anxiety and gender differences 5
artificial nutrition/hydration 116-117 death attitudes (adolescence) 29
case of Lucy Chamberlain 116 death attitudes (adulthood) 30
concept of a good death 111, 113-114 death attitudes (childhood) 27
end-of-life decisions 111-113 death denial 20
ethnic/religious profile 112 death system defined 312
palliative care practice 117 functions 330
place of death statistics 113 functions of a child 162
pain management practices 114-115 technology and the death system 330-331
status of advance directives 116 death of an elderly parent 161
understanding end-of-life terminology 114 adaptation anxiety 161
Japanese thanatology 32 anticipating the death of an elderly parent 161
Jewish culture 288 impact of a death – elderly parent’s 162
Latinos 68 death of a parent 160
liminality 202 death of a spouse (see also Bereavement) 166
locus of decision making 205 death panels 12
minority cultures 124-125 death-related attitudes 5-6
openness to cultural differences 125 my own dying 5
perspective of the culture (see Trauma) 298 my own death 6
professional caregiver obligations 398 what will happen to me after my death 6
recuerdo 327 the bereavement of someone I love 6
resocialization 306, 324 death rituals 262, 312
rituals 124 decision making 94
Thanatos 323 determination of the moment of death 179
Tuskegee study 5, 49 distrust 5
value of curiosity regarding culture 126 dying process 27, 29, 30
Death and Dying adolescents 29
accessibility to dying persons 65 adults 30
adult death rates 29 children 27
afterlife and dying 14-15, 348 dying trajectories 6, 39-41
age differences and longevity 76 early pregnancy loss 163-164
anticipated deaths 162, 175 anxiety 164
appropriate death 10 intrusive thoughts 164
Ars Moriendi 345 psychiatric caseness 164
autopsy 59-60, 184-185, 312 psychological distress 164
awareness contexts 17 embalming 186
awareness of dying 43 euphemisms 151-152
biomedical model 6-7 existential problems of death 324
conspiracy of silence 43 Gallup surveys 10
state of lonely apprehension 43, 246 growth of hospice movement 19
death by brain criteria 179-180, 257 growth potentials 22
Harvard Ad Hoc Committee on Brain holistic care 7, 209
Death Syndrome 179 infant mortality rates 26
determination of death 179 international data and longevity 74-75
debate 180 Kübler-Ross’ five stages of dying 8, 19
legal determination 179-180 location of death 75
moment of death 179, 257 miscarriage 164-165
cardiac death 179 mortality statistics 157, 167-168
caregivers and dying persons 5 non-normative death 82
causes of death 74 Omnibus Budget Reconciliation Act of 1990 47,
childhood concept of death 151 54
Death and Dying (continued) chaplains 336, 341

organ donation 180 children’s books about death and loss 369
Dead Donor Rule (DDR) 180 clergy education 343-345, 363
controversies 180 community death education opportunities 383,
donation debates 181 384
financial incentive donations 183 contraindications for participation 382
need statistics 181 ripple effects 382
opt out vs. opt in models 182 consciousness studies 333
organ procurement organizations 184 controversial issues 339-340, 341
presumed consent laws 184 religion 64, 127, 209-210, 285
survivor-family response to request 183-184 spirituality 9, 64, 127, 209, 287
temporary organ preservation (TOP) 180 curriculum 339
pain management 48 death issues in the workplace 340
palliative care 25, 38, 49, 78, 99, 350 hospice workers as death educators 341
PSDA of 1991 47, 54, 91-92, 104 nursing home workers as death educators 341
patterns of dying 75 developmental disabilities 41, 357
peer death during adolescence 151 developmental levels 381
phases of life threatening illness 22, 213 developmentally appropriate words 358
premature deaths 164-165 didactic teaching methods 351, 386
prolonged dying 168 education of teachers and health professionals
quality of life 13, 256 360
racial/ethnic obstacles to care 48-49 elderly interest in death education 361
racial/ethnic differences and longevity 74-75 evaluation 388
reasons to pay attention to dying persons experiential teaching methods 351, 381
Right to Die movement 106, 353 family
right to property 181 as agent of death education 368
rituals and dying 13-14, 68, 217, 372 as death education system 367-368
science’s definition of death 338 death education and family changes over
social death 18 time 368
spiritual needs when dying 10 family open communication issues 371
sudden deaths 162, 175, 233 generativity 363
Sudden Infant Death Syndrome 165-166 learning styles in families 370
Raphael’s synthesis of parental response to formal courses in death and dying 359, 361-362
SIDS death 165-166 formal death education 339, 369, 380
attributing blame 168 Association for Death Education and
SIDS mortality statistics 165 Counseling 340, 395
suffering and dying 12-13 graduate death education courses 335
symbolic immortality 15 informal death education 360, 361, 380
task model 24 tactical socialization 329
tasks and dying 82, 397 interdisciplinarity 351-352
tasks and the dying process 23-24 Internet 332
teen death rates 29 legal issues 335
treatment decisions 12 certification of death educators 390-1
time of dying 18 copyright 390
Uniform Determination of Death Act 180, 257 intellectual property rights 389-390
vulnerabilities to SIDS 166 liability 390
Western concepts of death 348 life education 382
wistful wishes 158 media and death education 373
Death Education entertainment 383
adolescents 359-360 media ethics 374, 383
death education television and formalized death education 375
books and other printed materials 369 television and film – fictional 374, 375
defined 333-334, 349 websites and other Internet resources 354-355,
early childhood 358 361
intervention 241-242 military OneSource 376
larger systems 372-373 modeling of death related behavior 370
print and electronic media 351 monitor safety and well-being of students 387
religious schools 342-343 societal and global issues 385
role of society 380
Death Education (continued) challenge to end-of-life decision making 92
need for death education for the medical communication 4, 58, 359
profession 353, 363, 377 competency issues 87
new pedagogy of death education 352 decision-making 94
death education and computer learning definition of end-of-life decision making 73
375-376 diversity issues 76
online death education courses 353, 364 durable power of attorney 105, 258
obligatory content of death education 385 Elizabeth Bouvia 91, 97, 107-109
current, accurate, and based on sound empirical end of life decisions 58-59, 111-113
research 385 adolescence 83
organizing frameworks 347 elderly adulthood infancy and young childhood
parent-teacher relationship 382 82-84
partnerships in the schools 382-383 young and middle adulthood 84
pastoral counseling as one form of death ethnicity/race and end-of-life decision making 76
education 234 family issues 86
pedagogy 386 gender differences in end-of-life decision-making
present and future needs 342, 386 76
qualifications and characteristics of the death health care proxy 105
educator 384, 385 Irish practice 111.113-4
readiness of the community 382 Karen Ann Quinlan case 47, 79-80, 96, 101, 101,
scholarship of teaching and learning 365 107, 255-256
teachable moments 338, 347, 349, 358, 374, last will and testament 260
380-381 legal issues 95-96
valuational dimension of death education 380 living will 105, 258
virtual classroom 387 Nancy Cruzan case 47, 79-80, 96, 101-102,
arrangements for contact 388 255-256
counseling services to distance students 388 Patient Self-Determination Act 46-47, 54, 91-92,
cultural and ethical issues 387 104
hybrid courses 389 pediatric care decisions 88
time limited death education opportunities 388 psychological interventions and end of life
End-of-Life Care decision making 77
cultural diversity issues in end-of-life care 205 redefining end-of-life care goals 48
disabilities 86 substituted judgment 102, 258
mental illness 87 suffering 12-13
five wishes 97 Terri Schiavo case 12, 79-80, 86-87, 102, 256
hope 64 treatment options and end-of-life decision making
implications for care at end of life 78
adolescence 29, 88-89 Ethics
adulthood 31 ADEC Code of Ethics 381
infancy and childhood 27, 37-888 autonomy 258
Patient Protection and Affordable Care Act bioethics defined 43-44
(PPACA) 95 biomedical ethics (see also Biomedical Ethical
Physicians Order for Life Sustaining Treatments Models) 44-47, 6-7, 92
(POLST) 97 body disposition 250
SUPPORT (Study to Understand Prognoses and codes of ethics 45-46
Preferences for Outcomes and Risks of Code of Medical Ethics 45-47
Treatments) 7-8, 49, 104, 365 consent 258-259
understanding terminology 115 ethical dilemma regarding definition of health
End-of-Life Decision Making 256-257
advance care planning 97, 104 ethical guidelines for practice 401
advance directives 104, 115, 256, 260 ethics of death care 259
infrequent utilization 260 Hippocratic Oath 45, 107, 257
Irish legal issues 115 informed consent 259, 390
Irish committee reports 115-116 do not intubate (DNI) 105
age and end-of-life decision making 76 do not resuscitate (DNR) 105, 258
artificial nutrition/hydration (ANH) 195, 116-117 ethical decisions about care 214
Irish Association of Palliative Care position 117 ethical issues and death education 379
Irish Medical Council position 117 ethical issues and intervention with the elderly
Lucy Chamberlin case 116 230
Ethics (continued) complicated grief 137, 141, 159, 162, 224-225,

ethics of death care 259 232, 233, 240, 296, 313
euthanasia 59-60, 98 complicated grief diagnosis 224-225
five moral ideals 46 complicated grief risk factors 224
futile intervention 48 criteria for complicated grief diagnosis 225
futility 48, 101-102 criticism of complicated grief diagnosis 225
substituted decision making 101 cultural, religious, spiritual, social, and
stakeholders interest 102 individual factors 130
Georgetown Mantra 46 culturally based experiences 190
Gert-Culver-Clouser system 46 culturally meaningful thanatology practice 199
hope 64 defined 135
informed consent 259, 390 differences between individual grief and
life prolonging technology decisions 114 family or group grief 235
living wills 105, 258 disenfranchised deaths 143
metaethical principles 258-9 disenfranchised grief 143, 163, 167, 173
ten moral rules 46 dissynchrony of grief 176
Western medical ethical principles 54 grandparents grief 163
Euthanasia grief in later childhood 151
assisted death 97-98 grief narratives 159
assisted suicide (see also Suicide) 73 grief pathology 122
active euthanasia 108 grieving styles
Death with Dignity Act 108, 258 griefwork 136-7, 220
Final Exit 49 challenge to griefwork model 221
persistent vegetative state (PVS) 101, 257 group grief 235
physician assisted suicide (PAS) (see also Suicide) instrumental grieving style 144
87, 106, 117 intuitive grieving style 144
Irish position on PAS 117 Major Depressive Disorder (MDD) 188
slippery slope 107 diagnoses problems 188
voluntary euthanasia 73 normal grief 220
Family parental grief 163
communications within the family 174 pathological grief response 220
definition 171 phases of grieving 137
decision making in the family 372 problematic grief 213
family life cycle 172 regrief phenomenon 154-155
family process 175 relearning the world 139
family relationships 172 response 188
family rituals 173 rituals of grief 287
family systems perspective 370-371 separation anxiety 288
family systems theory 171-172 stages of grief 136-137, 220
generativity 363 symptoms of acute grief – Lindemann 167
intergenerational family development traumatic grief 227, 275-276
approach 190 assessment 286
roles and responsibilities 174 defined 312
Funerals childhood traumatic grief 232, 285
cremation 187, 309 traumatic grief syndrome 313
Funeral Rule 186 Hospice
pre-need laws 187 accreditation 36
Grief definition of hospice 33-34
acute grief 137 care of the dying in institutions 38
anticipatory grief 17, 20-21, 139 care for underserved populations 38
anticipatory grief defined 142-143 conditions of participation 35
assumptions about HIV/AIDS grief in developmental disabilities 39, 381
various cultures 88, 125, 389 empowerment of family as caregivers 40
bereaved parents 163 evolution 34
childhood traumatic grief 243 gender and caregiving 41
clinical depression 144, 230 history 8
collective grieving 288 outcomes of caregiving 40
community grief 241 physical disabilities 39
prison population 38-39
Hospice (continued) Mourning
reimbursement 38 anticipatory mourning 23, 142, 162
Hospice and Palliative Medicine as a new assumptive world 139, 204, 227
subspecialty 36 cultural differences in how the deceased is
certification 37 thought of 17
hospice multidisciplinary team 78 cultural differences in periods of mourning
the patient and family are the unit of care 40 122-123
hospice statistics 34-35, 37-38, 113 cultural differences in who mourns 122
impact of truth telling 44 cultural, religious, spiritual, social, and
Irish Hospice Foundation 111-2 individual factors 136
National Consensus Project for Quality Palliative defined 135
Care 99 dual process model (see also coping) 146, 222
Human Development healthy mourning 227
adolescence 29, 83, 150, 152, 360 high risk and low risk mourners 224
adulthood 30 libido 136
childhood 26, 151 loss oriented processes 139
early childhood 151 melancholia 136, 263
late childhood 151 Mourning and Melancholia, 348
middle childhood 151 mourning as detachment 136
regrief phenomenon 154-155 new normals 136
developmental processes 149 outcomes of mourning 136
developmental tasks and core issues 152 restoration 136, 139
Erikson’s psychosocial stages of development 152 restoration oriented processes 139
life cycle (also life span) 25 six “R” processes of mourning 138-139
life span defined 357 stages in mourning 136
life span development concepts 159 tasks in mourning 137-138
normal developmental tasks 152-153 traditional views of mourning 221
problems endemic to aging 168 uncoupling (detachment or emancipation) 136
Internet Organ Donation
blogging 361 Bill of Rights of Donor Families 184
death education and computer learning 375-376 Human Tissue Gift Acts 182
factors affecting global response to pain 437 Organ Procurement Organizations (OPO) 184
Global Information Technology Report 420-430 transplantation 313
human computer interaction 429 Uniform Anatomical Gift Act (UAGA) 180-182
inequitable availability 430 Palliative Care
digital divide 430 defined 39
digital native 430 palliative care movement 8
Internet and death education 354-355, 375-376 palliative medicine 99
Internet and disenfranchisement 436 Professional Caregiver Issues
Internet and Information and Communication bereavement overload 341
Technologies (ICTs) 430 burnout 407, 408
interapy 283-284 defined 407
mobile Internet technology 284 strategies for managing stress and decreasing
online connectivity 431 communication training for physicians 99
online death education courses 364, 375-376 compassion fatigue 309, 407
online resources 387 defined 407
Pew Internet Study 432, 433 high levels of suffering 407
National Child Traumatic Stress Network 284 signs and symptoms of compassion fatigue
social managing sites (SMS) 433 407-408
social network sites (SNS) 432 strategies for avoiding compassion fatigue 408
defined 432 countertransference 400
types 432 dual relationships 402, 406
support groups 361 dynamics of the caregiver/client relationship 398
technology and the death system 330-331, 431 ethical and professional principles 396
thanatechnology 388 factors that comprise a helping relationship 390
traumatic grief 282-283 family and professional caregiver issues 7, 94-95
use of iPad with the elderly 436-437 interpersonal skills 395, 396
websites and other Internet resources 354-355, need for non-judgmental presence 64
361, 369 organizational skills 396
Professional Caregiver Issues (continued) Research

personal feelings 399-400 call for research on suicide 303
empathy defined 406 collaborative models 398
inherent risks 405 crisis response in communities 397-398
professional boundaries 400-401 limitations of family intervention research 246
defined 401 longitudinal outcome studies (death education)
boundary crossing 402 388
boundary violations 403 qualitative research 204
phenomenon of synchrony 406 relationship between personal experience with
power 401 loss and death education 381
principles of boundary establishment 401 observed differences in clinical practice and
remain current about the knowledge base 395 research 302
self-disclosure 387 schism between research and practice 397
self-understanding of professional caregiver 399 testing new grief intervention methods 237
supervision or consultation 234 trauma research principles 319
Religion use of technology (death education) 388
authentic religion 336 Resources in Thanatology
boundaries, religion, and spirituality 127 Organizational Resources
Buddhism 69, 128, 130 Assessment and Intervention 420
ceremonies 286 Death Education 425
Christianity 129 Dying 411
Confucianism 132 End-of-Life Decisions 414
criteria for defining religion 131-132 Loss, Grief, and Mourning 415
defined 9, 337 Traumatic Death 421
entanglement, religion, and care of dying 70 Research, Books, and Other Resources –
family diversity 70 Assessment and Intervention 420
generational division 69 Death Education 426
Hinduism 69 Dying 414
impacts of religion and spirituality on dying End-of-Life Decision Making 415
and grief inner experience 128 Loss, Grief, and Mourning 418
inner narrative 128 Traumatic Death 424
Islam 69, 130, 312 Socialization
Jainism 69 socialization defined 121
Jews 69 socialization and gender differences 142, 176-177
lived religion 129, 131 socialization and what can we assume about
membership in a community 128 how people grieve 124-125
modernity 128 socialization and when people might most
Native Americans (see also American Indians) 286 want help 126
negative religious outcomes (see also Trauma) 285 Social Security Act 7
official religion 129-130 Spirituality
positive religious outcomes (see also Trauma) 285 definition of spirituality 9, 210, 336-337
religion and assumptions about the world 128 existential crisis 210
religion and questions about the dead 128 impacts of religion and spirituality on dying
religion and symbols 128 and grief 212
religion vis-à-vis spirituality 65, 129, 210-211, longing for wholeness 64
287 Native American spirituality 286
religious coping 10-11 religious and spiritual practices and beliefs 211
religious rituals 285 spiritual assessment 215
religious and spiritual practices and beliefs 211, spiritual, cognitive, behavioral context 11
285 spiritual concerns 10
religious values in society 345-346 spiritual coping model 11
Roman Catholics 69 spiritual crisis 215
Taoism 132 spiritual needs 10
traditional societies 122 spiritual neglect and abuse 66
transcendent reality 133-4 spiritual quadrant 287
Western religious traditions 131 spiritual rituals 13-14
worldview 133-134 spiritual spectrum 11
spiritual tasks 214
spiritual well-being model 11
Spirituality (continued) defined 407
spiritual world defined 15 hyperarousal 308
spiritualities 11 intrusion 308
symbolic immortality 15 secondary trauma 309, 407
Suicide developmental posttraumatic adaptation 317
adult suicide survivors 301 disruption of memory in trauma 275
assisted suicide (see also Euthanasia) 73 disruption of the temporal continuity of
child rearing guilt 301 experience 276
child suicide survivors 301-2 disruption of self 275
contributing factors to suicide 299 distant trauma 308
death causation guilt 301 dose gradient 308
distressing life circumstances 299 ethical intervention issues 315
level of economic development 299 executive functioning 286
impact of suicide on survivors 287, 300 existentialism 293
physician assisted suicide (see also Euthanasia) family strategies for coping with trauma
87, 106 (see also Coping) 285
suicide, gender, and age 299 family systems approach 305
suicide rates by age 299 relational framework 306
suicide and 15-24 year olds 299 relational questions 306
suicide and age differences 299 finding meaning in loss 306
suicide and young children 300 homicide 292, 298
theories of suicide 299-300 homicide and age differences 298
Support homicide and gender 298
bereavement support (see also Assessment and human/natural events 311
Intervention) 231 impact of trauma on the family system 305
caregivers, bereaved children and adolescents impact of trauma on survivors 284, 302
154 impact of traumatic death on survivors 302
consistent parenting (see also Bereavement) incidence of homicide 298
163, 166 infants as homicide victims 298
crisis support teams 231 perpetrators of homicide 298
Critical Incident Stress Debriefing 230-231 kinds of forgetting 277
Dougy Center 230 major disasters 234, 307
parenting following bereavement (see also modernity/postmodernity 276
Bereavement) 163 sociocultural reaction of modernity 276-277
schools 241, 242 mortality statistics and traumatic death 167-168,
self-help groups 231 297
social support 166-167, 175, 230 natural disaster 307
spiritual support 217 negative religious outcomes (see also Religion)
support groups 249, 361 285
support group model 222, 229-230 personal experience of death 297
support systems 167, 168, 174 perspective of the culture 298
trauma support services 287 plastopatholic 275
Trauma positive religious outcomes (see also Religion)
annihilation anxiety 291 285
attachment theory 137, 292, 305 posttraumatic stress disorder (PTSD)
attitudinal diversity 331 232, 224, 279, 294, 308, 313
behavioral theory 292 complex posttraumatic stress disorder 314
childhood traumatic grief 243 disorders of extreme stress not otherwise
cognitive/behavioral theory 292-293 specified 314-315
collective trauma 278 posttraumatic growth 305
continuous stress syndrome 316 PTSD diagnoses errors 313-314
crisis response 397 pre-modern posttraumatic sociocultural practices
cultural protection against trauma 281 276-278
definition of traumatization 275 psychodynamic theory 291-292
disasters 245 psychological debriefing 397
disaster planning and intervention 308 psychological first aid 309
disaster workers/rescue workers 308 public tragedy 397
compassion fatigue (see also Professional reconciling process 305, 324
Caregiver Issues) 309, 383, 384, 407 recovery bill of rights 316
Trauma (continued) mistrust of the medical system 76

religion and coping with traumatic death 285 obstacles to health care 75, 114-115
repetition compulsion 291 management and discrimination 76
separation distress symptoms 313 “quality” vs. “quantity” of life 76
systems theory 92, 284, 293, 305 terminal illness, 27, 29, 30
Bowen 293 adolescence 29
subjectively perceived traumatic losses 271-272 adults 30
survivor issues 307-308 children 27
terrorism 308 treatment decisions 13
terror management theory 295 tube feeding 55, 57, 109
trauma and moral responsibility 279
trauma and relationships 276
trauma and somatoform disorders 280-281
trauma defined 312
trauma, depression, and grief 302
trauma focused treatment approach 306-307
trauma, grief, and survivors 302
trauma, history, and culture 277
trauma narratives 307
trauma theory 247
trauma, transgenerational transmission 277
traumatic death 232, 291, 297, 307, 312
defined 312
diagnosis 312
traumatic distress symptoms 313
traumatic event 312
traumatic grief defined 312
traumatology counselor standards 316
types of trauma – individual, cultural, social 275
victims’ bill of rights 318
victim/survivor rights 318-319
watchful waiting proactive intervention 316
anxiety management 316
cognitive therapy 316
exposure therapy 316
psychoeducation 312
programs 360
Treatment (see also Assessment and Intervention)
(see also Biomedical Model)
access to pharmaceutical drugs 76
acute care 7, 93
acute illness 93
best practices 197
chronic care vs. acute care 7
chronic illnesses 95
conventional care 77
evidence based practice 355
evidence based programs 222
family-centered multi-systemic approaches 190
futility 101, 102
stakeholders interest 102
substituted decision making 101
health care disparities 75
holistic care 217
hospitals 7
hydration 116, 246
Life Review and Reminiscence Therapy 214
life support 57-58
long-term care facilities 7

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Handbook

The essential body of knowledge for

David K. Meagher and David E. Balk, Editors

Association for Death Education and Counseling®

Simultaneously published in the UK

Routledge is an imprint of the Taylor & Francis Group, an informa business

All rights reserved. No part of this book may be reprinted or reproduced

Trademark notice: Product or corporate names may be trademarks or

Library of Congress Cataloging-in-Publication Data

ISBN: 978-0-415-63055-9 (pbk)

Introduction to the First Edition ........................................................................ v

Introduction to the Second Edition ..................................................................vii

Body of Knowledge (BOK) Matrix ................................................................... xii

List of Contributors ...........................................................................................xv

Part 1 Dying ............................................................................................1

Chapter 1 Culture, Socialization, and Dying ...............................................3

Chapter 2 Religion, Spirituality, and Dying .................................................9

Chapter 3 Historical and Contemporary Perspectives on Dying .............17

Chapter 4 Life Span Issues and Dying .......................................................25

Chapter 6 Ethical and Legal Issues Related to Dying and

Part 2 End-of-Life Decision Making

Chapter 7 Culture, Socialization, and End-of-Life

Chapter 8 End-of-Life Care:

Chapter 9 Historical and Contemporary Perspectives on

Chapter 10 Life Span Issues and End-of-Life

Chapter 11 The Family, Larger Systems, and

Chapter 12 Ethical and Legal Issues in End-of-Life

Chapter 13 End-of-Life Decision Making: An Irish Perspective ..............111

Part 3 Loss, Grief, and Mourning .......................................................119

Chapter 14 Culture and Socialization in Death,

Chapter 15 Religion and Spirituality in Loss, Grief, and Mourning ........127

Chapter 16 Historical and Contemporary Perspectives on

Chapter 17 Life Span Issues and Loss, Grief, and Mourning:

Chapter 18 Life Span Issues and Loss, Grief, and Mourning:

Chapter 19 The Family, Larger Systems, and Loss,

Part 4 Assessment and Intervention ................................................191

Chapter 21 Culture and Socialization in Assessment

Chapter 22 Religion, Spirituality, and Assessment and Intervention .....209

Chapter 23 Historical and Contemporary Perspectives on

Chapter 24 Life Span Issues and Assessment and Intervention .............239

Chapter 25 Assessment and Intervention in

Chapter 26 Ethical and Legal Issues in Assessment and Intervention ...255

Chapter 27 On Bereavement Interventions:

Part 5 Traumatic Death ......................................................................273

Chapter 28 Culture, Socialization, and Traumatic Death ........................275

Chapter 29 Religion, Spirituality, and Traumatic Death .........................285

Chapter 30 Historical and Contemporary Perspectives

Chapter 31 Life Span Issues and Traumatic Death ..................................297

Chapter 32 The Family, Larger Systems, and Traumatic Death ...............305

Chapter 33 Ethical and Legal Issues in Traumatic Death ........................311

Part 6 Death Education ......................................................................321

Chapter 34 Culture, Socialization, and Death Education ........................323

Chapter 35 Religion, Spirituality, and Death Education ..........................333

Chapter 36 Historical and Contemporary Perspectives on

Chapter 37 Life Span Issues and Death Education ..................................357

Chapter 38 The Family, Institutional/Societal Systems, and

Chapter 39 Ethical and Legal Issues in Death Education ........................379

Part 7 Three Overarching Indicators Within

Chapter 40 Professional Issues and Thanatology .....................................395

Chapter 41 Resources and Research in Thanatology ...............................411