Family Meetings at End of Life: A Systematic Review
Family Meetings at End of Life: A Systematic Review
KEY WORDS
BACKGROUND
communication, end-of-life, family meeting,
professional-family relations, suffering There are currently 47.6 million people living in the United
States older than 65 years, and this number is projected to
increase to 72.8 million by the year 2030.8 With an increas-
Suzanne S. Sullivan, MBA, BSN, RN, CHPN, is PhD student, School of ing prevalence of diseases such as diabetes, dementia, and
Nursing, University at Buffalo, State University of New York.
cancer,8 people are living longer with more chronic ill-
Carleara Ferreira da Rosa Silva, MS, RN, is technician at the Center
for Research in Gerontological Nursing, Federal Fluminense University, nesses than ever before.8 Thus, it is important to facilitate
Niteroi, Rio de Janeiro, Brazil, and PhD student, School of Nursing, Uni- family preparation at the EOL to reduce suffering for pa-
versity at Buffalo, State University of New York. tients and their family members.
Mary Ann Meeker, DNS, RN, CHPN, is associate professor, School of Communication is a critical component to prepare for
Nursing, University at Buffalo, State University of New York.
the EOL, enabling the patient, family, or health care surro-
Address Correspondence to Suzanne S. Sullivan, MBA, BSN, RN, CHPN,
University at Buffalo, State University of New York, 303 Wende Hall, gate to make informed decisions and to receive needed
3435 Main Street, Buffalo, NY 14214-8013 ([email protected]). information and psychosocial support. Currently, there is
The authors have no conflicts of interest to disclose. no gold standard approach for health care providers to con-
DOI: 10.1097/NJH.0000000000000147 duct family meetings. Structured and validated interventions
for conducting family meetings and training for health care and families. Studies were limited to adult participants
providers in their use are minimal. Nevertheless, evidence (918 years old), those with a life-limiting illness, and their
to support interventions to reduce suffering is beginning to adult family members. Articles published in English, French,
emerge. Our purpose, therefore, was to undertake exami- and Portuguese were included in the review. These lan-
nation and synthesis of the evidence available to inform guages were included as at least 1 team member had suf-
our understanding of family meetings at the EOL. ficient reading skill and the team hoped their inclusion
would facilitate a review with a broader multicultural per-
spective. Unpublished literature in the form of theses and
METHODS dissertations were considered. Studies about euthanasia
A 2-phased approach was used in a systematic search of and physician-assisted suicide were excluded as they do
the literature using the following electronic databases: not meet the objective of this systematic review.
PubMed, CINAHL, and PsycINFO. Grey literature was in-
cluded from ProQuest for dissertations and theses. Con- Quality Appraisal
ference abstracts of the American Academy of Hospice Quality appraisal was addressed in 2 sequential processes.
and Palliative Medicine/Hospice and Palliative Nurses Initially, the research reports to be included were divided
Association Annual Assembly were also searched in the among the team members for review and relevant data
Web of Science electronic database. were extracted into a standardized matrix.9 The matrix in-
Using a standard population-intervention-comparison- cluded explicit identification of strengths and weakness of
outcome format and selecting terms guided by Medical each study’s design and methods. To further evaluate the
Subject Headings terms and the PsycINFO thesaurus, key- quality of the included articles, a standardized quality as-
words were initially grouped into 3 categories (Table 1). sessment tool was used.10 No articles were excluded for
Terms were combined using Boolean logic OR within each poor quality.
category and AND across categories to purposefully con-
duct a broad search. Relevant articles known to the authors
were noted to be missing from the initial catchment, and
RESULTS
a second search of the literature was conducted with the A PRISMA (Preferred Reporting Items for Systematic Re-
assistance of a health sciences librarian. Medical Subject views and Meta-Analyses) diagram (Figure) was con-
Headings terms were revised, and keywords were added structed to document the search process. There were
to enhance a second search. The following additional 1113 articles initially identified in the search. After dupli-
terms were used: end of life, life limiting illness, family cates were removed and studies were excluded by title
meeting, family conference, terminal care, professional and abstract screen, 59 articles were assessed for eligibility
family relations, terminally ill patients, and family com- for inclusion in the synthesis. Twenty-four studies were ul-
munication. Articles retrieved by these search strategies timately included in this review (Table 2). The studies were
were subjected sequentially to title, abstract, and full-text published between 2002 and 2013 in peer-reviewed jour-
screening. Each citation was independently screened by nals and were multinational, including the United States
at least 2 researchers. (19), Australia (3), France (1), Ireland (1), and Japan (1).
Inclusion criteria for the systematic search included Study population sizes ranged from 9 to 367 participants
original primary research, published after the Patient and included terminal patients, families who were coping
Self-determination Act of 1991, that evaluated structured with a loved one with a terminal illness, and bereaved family
communication interventions directed toward patients members. The selection included studies that explored
Death Communication
Dying
characteristics of family meetings through observation and ing the studies, 3 major themes were found: outcomes, char-
interventions conducted to improve communication. Some acteristics, and barriers/facilitators of family meetings.
authors proposed theoretical models or guidelines based
on their findings to help guide health care professionals
in initiating and conducting family meetings.12,15,19 Outcomes of Structured Family Meetings
Forty-one percent (10) of the studies used quantitative Patients’ and families’ outcomes of structured family meet-
designs, including 2 randomized control trials. Thirty-eight ings included family satisfaction, psychological well-being,
percent (9) of the studies were qualitative. Five of the qual- and well-planned decisions regarding life-sustaining medical
itative studies were based on rigorous methods of grounded interventions. Family satisfaction was increased by specific
theory (3), ethnography (1), and hermeneutic phenomenol- clinician communication behaviors: allowing a greater per-
ogy (1), and 21% (5) of the studies were mixed method. Nine centage of time for family speaking,23 clinician expressions
of the 25 manuscripts were based on the same study of 51 of support in the form of assurances of nonabandonment,27
recorded intensive care unit (ICU) conferences (Table 2). assurances of patient comfort and alleviation of suffering,23
Two were based on the same intervention tested in 2 dif- empathy for what the family members were experiencing,26
ferent ICUs in a New Jersey hospital.21,24 The studies were and facilitation of shared decision making and support for
conducted in the following settings: ICU/surgical ICU (16), family decisions. 14,25,27,31 In 1 study, researchers at-
inpatient palliative care (7), and outpatient (1). In synthesiz- tempted to improve communication by including family
Curtis et al (2002)a,12 Understand family and Grounded theory 51 ICU conferences, 50 unique Conferences audiotaped Open and axial coding Y
clinician communication about patients, 36 physicians 2 frameworks: content;
W/W L-S or delivery of style/support
bad news
Curtis et al (2005)a,13 Identify missed opportunities Qualitative descriptive 51 ICU conferences, 214 Conferences audiotaped Content analysis for missed
to provide information or family members, opportunities; 29% of
support 36 physicians conferences (n = 15) had
missed opportunities.
Fineberg et al (2011)15 Develop a model to improve Prospective qualitative study 24 conferences, 24 patients, Audio and video recordings; Theoretical model is a useful
communication and conduct 49 family members, 85 HC postconference interviews guide for family meetings
family conferences providers with participants (conference organization,
negotiation, personal stance,
and emotion work).
Additional emphasis on
‘‘simultaneous presence’’ to
be on the ‘‘same page’’
Fukui et al (2013)b,16 Test the effectiveness of Pilot study; pre/post 15 primary family carers of Self-report instrument Improved psychological
clinical guidelines for intervention cancer patients admitted to completed (T1-3) well-being was reported with
conducting palliative care ICU use of the questionnaire. It is
family meetings in Japan an effective tool in planning
and conducting family
meetings in Japan.
Hannon et al (2012)b,17 Measure the effectiveness of Prospective study; pre/post 31 family members Self-report instrument Planned multidisciplinary
family meetings in a palliative intervention meetings in palliative care
care unit units are a valuable way to
help identify unmet needs
and promote sustained
benefits for the family.
Hebert et al (2009)18 Develop and test the a short Ethnographic, interventional Development: 33 caregivers, Audiotaped ethnographic People with different cultural
question prompt sheet 15 providers. Testing: interviews and focus groups background had similar
designed to encourage 50 caregivers concerns. Prompt sheet
caregiver discussions facilitates communication to
www.jhpn.com
about EOL initiate discussions.
Feature Article
(continues)
199
200
TABLE 2 Matrix of Studies8, Continued
Authors (Year) Purpose/Setting Design/Theory Sampling/Participants Data Collection Analysis/Findings
Hsieh et al (2006)a,5 Identify inherent tensions Qualitative descriptive 51 ICU conferences, Conferences audiotaped Let die or not let die as central
arising in ICU family (dialectical perspective) 214 family members, contradiction. Clinician
conferences and clinician 36 physicians strategies: information seeking;
strategies of response decision centered
Hudson et al (2009)b,19 Assess the effectiveness of Quasi-experimental study with 20 family meetings, Self-report instrument Clinical practice guidelines are
www.jhpn.com
recently developed guidelines pretest/posttest 42 participants effective in conducting family
for nurse-led meetings meetings.
Jacobowski et al (2010)20 Determine if including families Pilot before-after study 227 patients enrolled, 187 Telephone calls after ICU stay Including families in
in interdisciplinary rounds in patients survived and 40 died to complete a validated tool interdisciplinary rounds may
Feature Article
Lamba et al (2012)c,21 Evaluate if early Prospective, observational, pre/ Baseline: 79 patients, 21 Medical record data, palliative Earlier consensus around goals
communication in ICU would post study deaths. Intervention: care assessment sheets, and of care. DNR status
improve EOL care in 104 patients, 31 deaths audits of SICU rounds (52%-81%); WD of L-S
individuals after liver (35%-68%); from admission to
transplantation DNR (38-19 days); SICU LOS
decreased by 3 days. Families
reported increased ‘‘time to say
goodbye.’’
Lautrette et al (2007)22 Evaluate effects of proactive Multicenter RCT 126 family members of dying Observation of conference + To assess for intervention
EOL conference and ICU patients brochure. 90 days postdeath differences: cont. variables
brochure on health in telephone interview compared with Wilcoxon
bereavement rank-sum or Fisher exact test;
categorical Pearson # 2/IES
and HADS scores significantly
lower in intervention group:
Intervention patients had fewer
futile treatments.
McDonagh et al (2004)a,23 Identify relationship between Cross-sectional, descriptive, 51 ICU conferences, Conferences audiotaped; Increased proportion of family
proportion of family speech quantitative 214 family members, family satisfaction with speech was significantly
during family conference and 36 physicians communication associated with satisfaction
family satisfaction and decreased family ratings of
conflict with MD.
Mosenthal et al (2008)c,24 Explore end-of-life decision Prospective, observational All patients: baseline, 266; Retrospective chart review, Palliative care can be
making in the trauma ICU intervention, 367. Deceased: palliative care assessment successfully integrated into
baseline, 42; intervention, 46 sheets, and ICU round audits critical care in trauma ICU
without a change in mortality
rate, facilitates earlier
communication about goals
of care, and reinforces that
bedside EOL communication
in critical care is effective.
Selph et al (2008)a,26 Determine the association Prospective study 51 conferences, 169 family Audiotaped EOL decision At least 1 empathetic
between empathic statements members, 35 physicians conferences statement (66%): difficulty of
by clinicians and family situation (31%), surrogate
satisfaction with decision making (43%), and
Stapleton et al (2006)a,27 Assess relationship between Mixed qualitative descriptive 51 ICU conferences, 169 Conferences audiotaped; Coding per grounded theory
clinician communication and cross-sectional survey family members family satisfaction with and linear regression with
behaviors providing emotional communication questionnaire generalized estimating
support and family satisfaction equation method to assess
relationship between
frequency of emotional
support statements and family
satisfaction. Three types of
support were associated with
increased satisfaction.
Tan et al (2011)28 To explore the spiritual and Qualitative hermeneutic 47 interviews, 12 participants, Audio recording of interviews 7 themes: personal experience
psychosocial needs that are phenomenology (Ricoeur’s 36 family members after family meeting of meeting, personal
met during palliative care theory of interpretation) outcomes, observation of
family meetings others’ experience, observation
of experience and outcomes
for the family unit, facilitation,
how it could have been
different and general
applicability
Thornton et al (2009)a,29 Explore clinician-family Cross-sectional descriptive Interpreted: 70 family Audiotaped conferences NonYEnglish-speaking family
communication with family study members, 9 physicians. members are at risk of
members who do not Noninterpreted: 214 family receiving less information and
speak English members, 36 physicians emotional support when a
family member has a
critical illness.
www.jhpn.com
Feature Article
(continues)
201
202
TABLE 2 Matrix of Studies8, Continued
Authors (Year) Purpose/Setting Design/Theory Sampling/Participants Data Collection Analysis/Findings
West et al (2005)a,30 Explore expressions of Grounded theory 51 ICU conferences, Conferences audiotaped Open and selective coding.
nonabandonment; develop 214 family members, Conceptual model
conceptual model 36 physicians differentiates explicit and
www.jhpn.com
implicit statements of
nonabandonment.
White et al (2007)a,31 Investigate relationships of Quantitative mixed-effects 51 ICU conferences, Conferences audiotaped Met criteria for shared decision
shared decision making to regression model 169 family members, making (2%); addressed
Feature Article
Wright et al (2008)32 To determine if end-of-life Prospective longitudinal Patients with advanced cancer Recorded interviews Discussions associated with
discussions with physicians cohort study and caregivers (dyads) 332 conducted in English decreased ventilation,
are associated with fewer or Spanish resuscitation, ICU admission,
aggressive interventions and earlier hospice
enrollment. Increased
aggressive care was associated
with worse QOL and
increased risk of depression.
Increased hospice stays were
associated with better patient
and caregiver QOL.
Yennurajalingam et al (2008)33 Explore the characteristics of Quantitative retrospective 123 documented family Retrospective chart review Patients participated (60%);
inpatient palliative care unit study conferences expressions of emotional
family conferences distress by patients (18%);
families with patient present
(40%); family with patient
not present (47%);
infrequent questions of
advance directives and
W/WD life support
Abbreviations: DNR, do not resuscitate; EOL, end of life; HADS, Hospital Anxiety and Depression Scale; HC, health care; ICU, intensive care unit; IES, Impact of Event Scale; LOS, length of stay; L-S, life
support; MD, medical doctor; MDFM, multidisciplinary family meeting; PCCS, palliative care consult services; QOL, quality of life; RCT, randomized controlled trial; SICU, surgical intensive care unit; WD,
withdrawal; W/W, withdrawal/withhold; W/WD, withhold/withdrawal.
a
Studies conducted in 4 Seattle-area ICUs.
b
Validation studies of the Hudson34 Multidisciplinary Practice Guidelines.
c
Studies conducted in a New Jersey Hospital ICU/SICU.
members in interdisciplinary rounds.20 Families in this while dying. Families desired reassurance that loved ones
study were satisfied with the amount of interaction and would not suffer and were respected and that everything
support, but satisfaction decreased for some family possible was done before letting go. In a follow-up analysis
members who felt rushed to make EOL decisions. of these same data, Curtis et al13(p845) identified that in 29%
Participation in a family conference improved psycho- of the 51 family conferences, physicians did not attend to
logical well-being, as measured by premeeting and post- all opportunities to ‘‘listen and respond,’’ nor did they ad-
meeting questionnaires and interviews.16,17,22,28 Family equately provide emotional support during family meet-
members reported having an enhanced understanding of ings, including during the delivery of bad news.
the patient’s situation and care,14,16,17,25 improved mental
health in bereavement as evidenced by decreased
Barriers and/or Facilitators of an Effective
posttraumatic stress symptoms,32 a sense of meaningful
Family Meeting
connection with providers, and shared understanding
The included studies provided limited evidence con-
among all participants.13 Thus, the evidence is strong for
cerning barriers to and facilitators for effective family meet-
improved family outcomes when participants’ emotional
ings. Barriers included lack of awareness before the family
and informational needs are effectively addressed during
meeting of the seriousness of the patient’s situation and
the family conference.
poor prognosis. Without this awareness, family members
Another outcome of family meetings seems to be bene-
felt unprepared to make critical decisions during the meet-
ficial consequences from earlier decisions regarding life-
ing.25 Similarly, when family members felt rushed to reach
sustaining medical interventions. Similar studies in sepa-
a decision without adequate understanding during a family
rate settings found that a 2-phase proactive communication
meeting, this discomfort created a barrier.25 NonYEnglish-
intervention (including a family meeting) for liver trans-
speaking family members were found to be at risk for receiv-
plant patients21 and trauma ICU patients24 resulted in earlier
ing less information and emotional support when participating
do-not-resuscitate decisions and shorter lengths of stay in
in interpreted meetings.29 Finally, lower educational level
the ICU for those patients who died, suggesting reduced suf-
was associated with decreased shared decision making.31
fering. The findings suggest that when palliative care inter-
A strategy that facilitated effective family meetings was asking
ventions are integrated into intensive care, early consensus
family members to identify their primary concerns before
around goals of care does not increase mortality rates. In re-
the meeting via a brief questionnaire.16-18,22
lated findings, Wright et al32 found that EOL discussion was
associated with less use of resuscitation and mechanical
ventilation and shorter ICU length of stay as well as with ear-
lier hospice admission. In turn, these differences in EOL care
DISCUSSION
were associated with caregiver’s improved bereavement The findings of this systematic review suggest that struc-
outcomes. tured family meetings are effective means of communicating
when preparing for the EOL, potentially reducing suffering
Characteristics of Structured Family Meetings for patients and family members and providing opportuni-
Several studies looked at the characteristics of family meet- ties for shared decision making. Included studies demon-
ings via observation from recorded ICU conferences13,30,32 strated that structured communication interventions could
and retrospective chart review.11,33 Most family meetings improve psychological well-being16,17,22 and decrease
were initiated and led by physicians. Bloomer et al,11 in a posttraumatic stress symptoms in bereavement.32 Families
retrospective chart audit, reports that only 25% of the med- valued communication that included comprehensive infor-
ical records reviewed had documentation indicating that mation and emotional support. Thus far, little is known
nurses were involved in family meetings. about factors functioning as facilitators and barriers to
Curtis et al12 found that family meetings involved bidi- high-quality family meetings.
rectional information sharing between the health care team Family meetings in this review typically included mem-
and family. Physicians educated families about progno- bers of the interdisciplinary health care team: physicians,
sis and sought decisions surrounding EOL care, and fam- nurses, chaplains, social workers, and therapists who for-
ilies provided information about the individual on a mally met with patients and their family members to elicit
personal level. Nurses and other health care providers also EOL decisions surrounding withdrawing or withholding
provided emotional support and addressed uncertainty life support. The evidence suggests that the most effective
and hope while taking time to clarify inconsistencies and models focused on how the meeting was conducted rather
misinformation.13,14,16,18,27,32 than who attended the meeting. For example, expressions
An important characteristic of family meetings was as- of empathy and transparency were useful in relieving stress
surance of nonabandonment.30 Families valued reassur- for patients and their family members and the benefits of
ance, access to providers, and proximity to the patient improved EOL care cascade to benefits in bereavement.22
Most of the studies were conducted in the acute care setting Researchers concur that both patients and their involved
or ICU; therefore, there is little evidence with which to com- family members need intensive supportive communication
pare the success of formal meetings conducted in other set- with providers that addresses their informational and emo-
tings, such as in primary care offices or the home. tional needs. There remains a great deal of work to be done
Furthermore, there was little evidence supporting the to identify the nature, timing, content, and delivery mode
role of the nurse in family meetings. Only 2 studies in this for interventions to improve the EOL phase for both pa-
review11,17 specifically explored the role of the nurse in tients and their caregivers in ways that are both effective
structured family meetings. Nurse-facilitated EOL meetings and pragmatically feasible. Future research needs to focus
deserve further study as nurses are especially well equipped on the development of structured communication inter-
to improve communication during EOL planning owing to ventions that specifically guide the nurse or other health care
their proximity to patients and families, contextualized provider through the process, including needs assessment,
knowledge of the patient, extensive training in communi- assessment of the emotional state and readiness of patients
cation, and commitment to the role of patient advocate.35 and their families, and explication of effective strategies for
Among the limitations of this review, database structure the provision of meaningful information and emotional
and indexing patterns made it difficult to identify relevant support. Prospective, longitudinal studies could help iden-
studies. We performed a 2-phased approach to obtain rel- tify active elements of family meeting interventions as well
evant studies, rather than a single protocol-driven approach. as measures of effectiveness.
The variability in study designs created challenges in synthe-
sizing findings for comparisons and generalizations to be
Acknowledgments
drawn across studies. In addition, threats to validity include
The authors thank Dr Castner and Sharon Murphy.
the fact that most of the articles were based on data collected
from 2 sets of related studies, potentially creating bias and
homogeneity of findings. REFERENCES
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