End-of-Life Issues, Grief, and Bereavement: What Clinicians Need to Know

Preface

End-of-life care is recognized as a critical component of geriatric health care, but is really a component of health across the lifespan. Choices made early in life obviously influence quality of life and decision options at the end of life. The lifespan framework for health care reminds us that end-of-life care is but one more step in a lifelong process. However, awareness that life will end helps us ask questions about values, preferences, choices, and motivations at all ages. Research evidence that death is not as anxiety-provoking for older adults as it was in mid-life does not imply that death awareness is not salient. Indeed, care choices in later life are often viewed differently in the conscious presence of death than in the absence of that awareness. We believe that deep reflection and understanding of end-of-life care enriches clinical understandings of mental health service providers who work with older adults in any context.

Despite its considerable stigma, or perhaps because of it, end-of-life care has ended up being an innovative leader in reconceptualizing health care. Indeed, in recent years, hospice and palliative care models have led the way into integrated care. The models that guide end-of-life care inevitably include multiple disciplines, typically operating as an interprofessional team. The rich interconnectedness of care provided by professionals representing several disciplines has been fostered explicitly in end-of-life care. Many use hospice care as an ideal against which to compare extraordinarily fragmented, pathology-focused, high-tech medical models that dehumanize us at the times when we most need genuine care. Human-to-human care is at the core of excellent health- and wellness-service systems. Ironically, those working at the very end of life seem to have moved farther faster than any other domain of health care in generating new models and standards.

Perhaps it is obvious then why this book is included in Wiley’s Clinical Geropsychology series that is designed to invite and educate practitioners who serve older adults. Within the field of Psychology, a set of competencies for geropsychologists were defined within the Pikes Peak Model for Training in Professional Geropsychology (Knight, Karel, Hinrichsen, Qualls, & Duffy, 2009). End-of-life care is an explicit component of those competencies. Mental health providers working with older adults simply must develop the competencies needed to work with end-of-life care issues, challenges, concerns, opportunities, and so forth.

The book series on Clinical Geropsychology was launched out of an annual Clinical Geropsychology conference held in Colorado Springs for five years between 2005 and 2009. The book series paralleled the conference, with the shared goal of providing advanced training to experienced mental health providers seeking postlicensure learning opportunities related to geriatric mental health. The structure of any book reflects a creative process; these books reflect interpersonal as well as intrapersonal creativity. The editors of each book in this series could describe the unique challenges to summarizing each entire field in a way that is useful to practicing clinicians. The first book, Psychotherapy for Depression in Older Adults (Qualls & Knight, 2006) took up the challenge of summarizing a vast and growing literature in a way that was practical for clinicians treating depressed older adults with complex presentations of symptoms and in contexts that extend far past our empirical research base. The interdisciplinary nature of a rapidly emerging new field was the challenge of the second book, Changes in Decision-Making Capacity in Older Adults: Assessment and Intervention (Qualls & Smyer, 2007). The third book faced yet a different challenge: building an empirically based approach to clinical work with older families despite the extremely limited base of clinical outcome research (Aging Families and Caregiving: A Clinician’s Guide to Research, Practice, and Technology, Qualls & Zarit, 2008).

The book you hold faced yet another unique challenge—how to keep visible the raw, poignant existential issues faced daily by clinicians doing this work while guiding the reader into what is known about practice models, patterns, and research. This book emerged from the 2008 conference, designed by the conference presenters over a lovely dinner on a warm Colorado summer evening in the shadow of Pikes Peak. The authors of this book were the conference faculty, selected for their rich clinical experience that was grounded in research as well as existential self-awareness. The vast majority provide end-of-life clinical care daily and train students to do the same. The task of writing with the authentic voice of a clinician who is working in the trenches as well as the authoritative voice of the research evidence base required finesse. We believe they succeeded remarkably, but you will be the judge as to whether the book is genuinely useful to you.

The book opens with an overview chapter (Kasl-Godley, Chapter 1) that orients the reader to what is unique about end-of-life care from other types of mental health services. A series of clinical issues are then addressed in chapters that include the details needed by any clinician new to the field. Exactly how does dying occur, and how does it vary across illnesses (Gabriel, Chapter 2)? What are the meaning and spiritual issues that are nearly inevitably visible in end-of-life care (Strada, Chapter 3)? How are families engaged in end-of-life care, and what services do mental health clinicians provide them (Feldman & Llamas, Chapter 4)? How does the presence of a mental disorder alter end-of-life experiences and care, and how should providers address disorders that appear at the end of life (Kasl-Godley, Chapter 5)? What are the tools and strategies involved in advanced care planning, and how do they play out during end-of-life care (Gabriel & Kennedy, Chapter 6)? Pain management is a huge issue at the end of life, with pharmacological (Timmins, Chapter 7) and nonpharmacological (Wallio & Twillman, Chapter 8) approaches available to mental health providers. Bereavement and grief also are inevitable processes at the end of life, whether normal (Otis-Green, Chapter 9) or complicated by other factors (Strada, Chapter 10).

Mental health providers often find that their work is influenced as much by the settings of professional practice as by the technical skills of their profession. Kasl-Godley and Kwilosz (Chapter 11) offer a guide to the interprofessional team as a common care context within hospice and palliative care service systems. Lewis (Chapter 12) guides the reader through unique aspects of end-of-life care that occur in the institutional and residential environments of long-term care. Ethical, legal, and policy contexts also exert significant impact on care services. Twillman and Lewis (Chapter 13) describe current policy issues that influence services so directly that they require attention and engagement by providers. A unique chapter in this book is the essay on hastened death policy and practice that receives so much media attention today (Canetto, Chapter 14). Wakin (Chapter 15) describes a community planning process by which one community created an end-of-life ethical guidebook for providers as the culmination of many, many, many community conversations.

Ultimately, end-of-life care is emotionally and existentially evocative for the clinicians who work with the fragile linkages between life and death on a daily basis. Strada (Chapter 16) offers words of wisdom, guidance for the journey, and other recommendations about self-care that is needed to sustain capacity to provide care. Finally, Otis-Green (Chapter 17) invites us to embrace the existential opportunities that are embedded in end-of-life care because they will enrich our lives as humans as well as providers.

We hope you find this book as rich as we have found the process of creating it.

REFERENCES

Knight, B. G., Karel, M. J., Hinrichsen, G. A., Qualls, S. H., & Duffy, M. (2009). Pikes Peak model for training in professional geropsychology. American Psychologist, 64, 205–214.

Qualls, S. H., & Knight, B. G. (Ed.). (2006). Psychotherapy for depression in older adults. Hoboken, NJ: Wiley.

Qualls, S. H., & Smyer, M. A. (Ed.). (2007). Changes in decision-making in older adults: assessment and intervention. Hoboken, NJ: Wiley.

Qualls, S. H., & Zarit, S. H. (Ed.). (2008). Aging families and caregiving: a clinician’s guide to research, practice, and technology. Hoboken, NJ: Wiley.

CHAPTER 1

Introduction to End-of-Life Care for Mental Health Professionals

Julia E. Kasl-Godley

The needs of individuals with life-limiting or terminal illness and those caring for them are well documented. However, meeting these needs can be challenging, particularly in the absence of a well-established evidence base about how best to help. In this chapter, we offer guidance in working with individuals at the end of life and the family, friends, and professionals caring for them. We first define palliative and hospice approaches to care and discuss barriers to this care. Then we describe the needs of individuals with life-threatening and terminal illness and their families. We end the chapter with some general intervention strategies for meeting these needs.

BACKGROUND

Many older adults live years with progressive and often comorbid, debilitating illnesses. For example, one study of Medicare beneficiaries found that 62% of those 65 and older have two or more chronic conditions (Anderson & Horvath, 2004). Comorbidities can result in faster disease progression, problems diagnosing and managing new conditions, and complexities of care coordination across settings and providers. Individuals with advanced and terminal illness often face additional challenges. Preferences concerning life-sustaining treatments often are not discussed adequately, documented or adhered to, and existential and spiritual concerns may largely be ignored. Individuals may endure multiple, prolonged hospitalizations, unnecessary interventions (e.g., intubation, ventilation), unrelieved physical and psychological symptoms (e.g., pain, fatigue, appetite and sleep problems, breathing difficulties, nausea/vomiting, constipation, delirium, depression, or anxiety), interpersonal stress, economic burdens and unmet practical needs (Conill et al., 1997; Emanuel, Fairclough, Slursman, & Emanuel, 2000; Field & Cassel, 1997; Fins et al., 1999; Foley, 2000; Nelson et al., 2001; Support Principal Investigators, 1995).

Palliative care is an approach to care that improves the quality of life of medically ill persons and their families through relief of suffering, pain and symptom management, psychosocial support, optimization of functional capacity, and respect for autonomy and the appropriate role of family and legal surrogates. Palliative care may be provided at any time during an individual’s illness, without reference to a specified life expectancy, and can be provided in concert with curative approaches. Hospice usually refers to care provided during the last six months of life and often is linked to the specific programs offered under the Medicare Hospice Benefit. Individuals receiving hospice typically must agree to forego aggressive or curative treatments, though some interventions may be performed to maximize quality of life, such as blood transfusions to maintain energy levels in individuals with leukemia. Specific goals of hospice include self-determined life closure, safe and comfortable dying, and effective grieving (National Hospice Organization, Standards and Accreditation Committee, 1997). Both palliative care and hospice emphasize the needs of medically ill individuals and their families (National Hospice Organization, Standards and Accreditation Committee, 1997). Conditions for which hospice and palliative care are appropriate include cancer, HIV/AIDS, congestive heart failure, chronic obstructive pulmonary disease, organ disease, and dementia and other progressive neurological diseases.

Although hospice and palliative care is associated with better patient and family outcomes when compared to usual care (e.g., Cassarett et al., 2008), unfortunately, it is underutilized. For example, one study found that only one-fifth of Medicare-eligible individuals with terminal illness eligible for hospice services received services (Jennings, Ryndes, D’Onofrio, & Baily, 2003). In addition, many individuals who receive hospice services are referred very late in the disease course and a proportion of terminally ill persons and families believe that it is too late to benefit fully (e.g., Schockett, Teno, Miller, & Stuart, 2005). Potential explanations for this underutilization include attitudinal and emotional barriers; sociocultural factors affecting communication and decision-making patterns; disparities in access to, and receipt of care; and limited or misinformation about diagnosis and prognosis (Brickner, Scannell, Marquet, & Ackerson, 2004; DesHarnais, Carter, Hennessy, Kurent, & Carter, 2007; Feeg & Elebiary, 2005; Hallenbeck, 2003; Hancock et al., 2007; Rodriguez, Barnato, & Arnold, 2007; Spathis & Booth, 2008; Stuart, 2007).

CHALLENGES IN PROVIDING HOSPICE AND PALLIATIVE CARE

Attitudinal and emotional barriers. Providers’ beliefs and values may impinge on appropriate referral to, and receipt of, palliative care or hospice services. Hospice and palliative care may symbolize evidence of their patients’ deteriorating courses and thus, the providers’ own perceived failures at cure. Providers may be concerned about upsetting patients by discussing palliative or hospice care or worried about destroying their hopes or being viewed as giving up on them (Brickner et al., 2004; Feeg & Elebiary, 2005; Hallenbeck, 2003; Rodriguez et al., 2007; Stuart, 2007). As a result, providers may avoid talking about goals of care or end-of-life wishes. For example, in one study of primary care physicians of individuals with advanced AIDS, when asked to indicate why they sometimes do not discuss end-of-life care even when appropriate, many physicians cited fearing that such a discussion would destroy these individuals’ hope (Curtis, Patrick, Caldwell, & Collier, 2000). In fact, this reason was the second most cited behind too limited a time during patient consultations to broach such a sensitive topic. The challenge for providers and the medically ill persons they serve is to expand and redefine their views on hope (Gum & Snyder, 2002). Living with an incurable disease does not mean living without hope; it just means redefining it (Parker-Oliver, 2002; Sullivan, 2003). Although the goal of life prolongation may remain fundamental for some terminally ill persons, it can be supplemented with goals for comfort, dignity, legacy-building, intimacy, and continued involvement in decision making (Parker-Oliver, 2002; Sullivan, 2003).

Although physicians may avoid end-of-life conversations for fear of distressing patients, many individuals report feeling better able to make informed decisions when they have all the relevant information available and, as a result, feel less distressed (e.g., Butow, Dowsett, Hagerty, & Tattersall, 2002). Good advance care planning is associated with increased patient satisfaction, sense of control and, reduced fears, anxiety, and emotional distress (Curtis, Engelberg, Nielsen, Au, & Patrick, 2004; Heaven & Maguire, 1997; Smucker et al., 1993; Tierney et al., 2001). In addition, family members report being more satisfied with care when they are regularly informed of their loved ones’ conditions. Frank discussions do not require forcing individuals to admit to their impending death or confronting them with dying; however, confronting the medically ill person may be needed if apparent denial gets in the way of attending to issues that are important to the person. These discussions can be framed in terms of hoping for the best while preparing for the worst (Back, Arnold, & Quill, 2003) and focusing on that which is important to individuals with advanced, life-limiting, or terminal illness and their families in whatever time remains. Mental health providers often are integral to these conversations and to facilitating coping and adjustment.

Sociocultural factors. When interfacing with the medical system, individuals with advanced, life-limiting, or terminal illness and their families may be dependent on professionals of different cultural backgrounds, not to mention the often foreign culture of the medical system itself, the beliefs, practices, and communication styles of which can differ substantially from individuals’ personal and cultural values. Western Medicine emphasizes individual autonomy, direct communication, preferences for disclosure and verbal expression of feelings and needs. It emphasizes surrogate decision making and substitute judgment (e.g., carrying out patients’ wishes) in contrast to family-centered care that focuses on who in the family is making the decisions and the way in which decisions may be influenced by role obligations or relationships. Thus, the approach of Western Medicine may be inconsistent with many individuals’ preferences for care (Blevins & Papadatou, 2006; Danis & Lavizzo-Mourey, 2003; Hallenbeck, Goldstein, & Mebane, 1996) or may even be harmful (Carrese & Rhodes, 1995). For example, some families prefer that the medically ill individuals not be told of their diagnosis, which can create tensions among family and health-care professionals particularly if it is unclear if this preference is shared by the ill person (e.g., the patient may give mixed messages about what he or she wants to know). Many medically ill individuals defer to a family member and identify that member as the decision maker, even when the patient has decision-making capacity.

When families are caught between competing values, they may struggle with goals of care (Blackhall et al., 1999; Blackhall, Murphy, Frank, Michel, & Azen, 1995). For example, a son acting as a surrogate decision maker using substitute judgment may recognize that his father would not want to be maintained on a ventilator but filial piety requires him not to withdraw treatment because a good son does not let his parent die. This tension may explain some of the cultural differences in preferences for life-prolonging interventions (Klessig, 1992). Providers will want to consider how to balance frank discussions about diagnoses and treatment options with respect for cultural and personal beliefs and values. These values often are richly apparent in how individuals with advanced or terminal illness and families make sense of their illness and cope with it.

Medically ill persons, along with the family members and staff who care for them, can maintain divergent beliefs about the patient’s illness, how the patient became ill (e.g., poor lifestyle factors, retribution or payback for past misdeeds, just one’s time) and the consequences of the illness. Explanations, or explanatory models of illness, can be as varied as the number of people involved in the care and sometimes these explanatory models can lead to misunderstanding and conflict (Kleinman, 1978). Elucidating and sharing these perspectives and beliefs can promote mutual understanding or at least, communicate respect and a desire to understand all participants’ perspectives (Kleinman, 1988; Kleinman, Eisenberg, & Good, 1978). Key domains that can help providers elucidate their own and their patients’ and families’ explanatory models of illness and potential areas of conflict include: (a) beliefs about the illness, underlying causes, course, and primary problems; (b) views on treatment, including appropriate options, as well as hopes and fears; and (c) ways in which providers can be helpful and who should be involved in the care and decision making (Kleinman, 1988; Kleinman et al., 1978).

Part of exploring explanatory models is being transparent about one’s intention to understand and learn about the experience of individuals with advanced or terminal illness (Hallenbeck et al., 1996). Individuals’ previous experiences with illness, dying, death, and loss can influence their reaction to their current situation and approach to care. For example, if they watched someone close to them die in uncontrolled pain, they may doubt providers’ reassurances about good symptom management. Individuals’ reactions also may be influenced by discriminatory health-care practices and behaviors (Crawley, 2002). Providers are encouraged to ask difficult questions such as It is important to me to know if you have ever felt unfairly treated by me or anyone else involved in your care (e.g., Crawley, Marshall, Lo, & Koenig, 2002). Furthermore, it is important to listen to what medically ill individuals and their families perceive as being a competent provider. Competence may not be defined only through knowledge and skills but through interpersonal relatedness—someone who takes the time to meet with, and get to know, all involved family members.

Health-care disparities. People of color are more likely than Whites to experience social and economic disparities, resulting in unequal or poor access to, and utilization of, medical care (Smedley, Stith, & Nelson, 2003). Hospice and palliative care services are no exception (Krakauer et al., 2002). Unequal access to, and receipt of, care may be compounded further by ineffectual outreach, poor care coordination among treatment teams and providers, poor access to prescriptions for narcotics, or simply lack of information or familiarity with these services, both on behalf of individuals with advanced disease and providers.

Limited or misinformation. Another potential barrier to good hospice and palliative care is lack of knowledge. Physicians often lack knowledge regarding patient preferences for pain control, place of death, or financial or religious factors that influence care preferences (DesHarnais et al., 2007; Hancock et al., 2007). Providers also may lack basic information about hospice and palliative care. For example, in one study of physicians, 84% were unable to identify appropriate hospice diagnoses (Brickner et al., 2004). Part of the difficulty in identifying appropriate referrals to hospice may be related to difficulty with prognostication, particularly when the disease trajectory is uncertain, as is the case for noncancer diagnoses such as chronic obstructive pulmonary disease (COPD) and heart failure (HF) (Curtis, 2008; Spathis & Booth, 2008; Stuart, 2007). See Chapter 2, Trajectories of Chronic Illnesses, (Gabriel) for a more detailed discussion of disease trajectories and issues of prognostication. Prognostic uncertainty not only interferes with appropriate referral, but leaves individuals with advanced disease being unclear about diagnosis and prognosis (Andruccioli et al., 2007), which may result in postponing advanced care conversations. In addition, providers may be uncertain about how much information individuals with advanced disease want (e.g., extent of disease, goals of treatment) or may misjudge how much information they and their families have absorbed or understood (DesHarnais et al., 2007; Hancock et al., 2007), given that patients and families’ abilities to hear and process everything that they have been told can be impaired by factors such as anxiety or health-care literacy.

NEEDS OF INDIVIDUALS AND THEIR FAMILIES

The needs of individuals at the end of life have been well documented (Block, 2001; Emanuel et al., 2000; Greisinger, Lorimor, Aday, Winn, & Baile, 1997; Lev, 1991; Singer, Martin, & Kelner, 1999; Steinhauser, Christakis, et al., 2000; Steinhauser, Clipp, et al., 2000). People at the end of life report the need for good symptom management and to maintain control where possible. Yet, as discussed earlier in this chapter, many individuals report a high symptom burden. They may wrestle with existential and spiritual questions, psychiatric illness/symptoms or physical symptoms such as dyspnea, pain, and extreme fatigue. As symptom burden and functional declines increase, individuals experience diminished autonomy and control. They may fight to regain or assert control.

Individuals at the end of life hope not to be a burden on their families or society and often seek to find ways to help others through sharing their wisdom, modeling a meaningful path through the dying process, and teaching. They strive to make meaning of their life and death, preserve dignity, remember personal accomplishments, deal with failures and regrets, and maintain a sense of purpose and identity. They want to be prepared for death such that they know what to expect about their illness, have their affairs in order, and believe that their families are prepared for their impending death. Yet often, terminally ill individuals struggle with issues of identity, value, purpose, and meaning. They report a lack of preparation for dying and death. They worry about how their illness affects family members and about how their family will manage after they die. Practical matters, such as financial and legal arrangements, may be left undone. Family members also may struggle to make sense of the individual’s illness and life even after the person dies.

Individuals at the end of life typically want to have closure in their relationships, to have said good-bye, resolved unfinished business, and reconciled differences. They want to feel cared for and affirmed as a whole person—being known as a person with a rich and varied history, not just as a patient or disease entity; they want to be seen, heard, and touched. Yet often their history is diminished as they become the patient with head and neck cancer. Individuals at the end of life want to maintain good relationships, particularly with health-care professionals with whom they feel comfortable talking about dying, death, and personal fears. Yet often, communication with providers does not address these topics and individuals may feel abandoned, confused or unsure of where to turn when curative or life-prolonging interventions are no longer available.

GENERAL INTERVENTION STRATEGIES

There are some general intervention strategies that can be useful in assisting individuals at the end of life and their families address the aforementioned needs (Balaban, 2000; Block, 2001; Lo, Quill, & Tulsky, 1999; National Hospice Organization, Standards and Accreditation Committee [NHO], 1997; Quill, 2000; Vachon, 1998; von Gunten, Ferris, & Emanuel, 2000). This chapter provides an overview of these strategies; subsequent chapters in the book provide specific strategies in greater detail.

Assist with advanced care planning and end-of-life decisions. Individuals at the end of life can face a myriad of treatment decisions such as withdrawing/discontinuing life-prolonging treatments (e.g., mechanical ventilation) or electing not to pursue life-prolonging treatment (e.g., declining chemotherapy or radiation, forgoing artificial nutrition/hydration). They may be uncertain, or have strong preferences about who is, and is not, to be included in treatment decisions. They may be overwhelmed with the entire process and need a sounding board. Mental health providers can listen, offer basic information about illness and the dying process, identify medically ill persons’ and their families’ values and goals for living and dying, clarify treatment options, obtain advanced directives and, evaluate factors that can influence decision making and decisional capacity (e.g., depression, pain, dependency, religiosity, value of quality of life, fear of dying process, and the influence of family members). See Chapter 6, Advance Care Planning (Gabriel & Kennedy), for a more in-depth discussion of advanced care planning.

Respond to financial, legal, social or practical concerns. Individuals at the end of life may be weighed down by any number of practical issues—selling a family business, updating wills, completing final arrangements, arranging transportation and lodging for long-distance family members, or renegotiating household roles and responsibilities. These issues can stress the entire family. Mental health providers may find that these practical concerns are among the most salient issues for individuals and, therefore, need to be attended to at least simultaneous to other issues, if not first.

Promote coping with loss and opportunities for grief work. Individuals at the end of life often experience a myriad of losses—loss of health, function, independence, autonomy, control, predictability, mental clarity, sense of purpose or meaning, status in the family, future hopes and dreams, or normalcy. Providers will want to create the space to explore the meaning and impact of these losses, particularly grief over current and anticipated losses in both the medically ill individuals and their families. How individuals make sense of loss, or the lack thereof, is critical to adjustment. Chapter 9, Grief and Bereavement Care (Otis-Green), offers a more detailed discussion of grief and loss.

Mental health providers can identify factors that tend to influence adjustment to any stressful life event—including living with a life-limiting or terminal illness—such as preexisting psychiatric conditions, personality and cognitive style, coping efforts, intra- and interpersonal resources, and concurrent stressors. Mental health providers can reinforce and bolster coping by identifying how individuals with advanced disease may have coped in the past with loss or other stressful life events, and how their capacities to utilize these strategies may be compromised by the illness and associated symptoms, such as fatigue or diminished cognitive function. Symptoms may challenge individuals’ abilities to manage their mental health proactively and force them to modify existing strategies or generate entirely new ones. For example, individuals who typically cope through physical activities may be encouraged to shift from biking to walking, from a motorized scooter to a wheelchair. Those individuals who cope through gathering information but now have memory problems could be encouraged to keep a notebook of questions and written responses. Those individuals who cope through support and social interaction may be encouraged to limit activities during the day so to conserve energy for a family visit later that evening. Flexibility, distress tolerance, and a focus on values and meaning are critical to adjustment. Maintaining a sense of perceived efficacy and control also can be critical, particularly for many individuals who are hospitalized or in long-term care given their diminished sphere of control. For hospitalized individuals, it can be useful to discuss with other providers caring for the person how to facilitate or maintain control within the parameters of the medical setting, such as the possibility of skipping late night medications or setting appointments with staff. See Chapter 11, Health-Care Teams (Kasl-Godley & Kwilosz), for further discussion of care coordination with other disciplines when working with individuals at the end of life who are hospitalized. Chapter 12, End-of-Life Care in Long-Term Care Settings (Lewis), highlights issues salient in long-term care.

Address existential issues such as the nature and sources of suffering and promote meaningful quality of life and continuity with oneself. Often as a result of the multitude of losses, individuals’ basic sense of who they are is threatened. They may feel reduced by the disease, with the disease robbing them of any sense of purpose, meaning, or even personhood. Many individuals at the end of life report a diminished sense of dignity, believe they are a burden to others, or express a waning will to live and a growing desire for death (Chochinov, Hack, & Hassard, 2002). They can experience spiritual or existential angst, crisis of faith or hopelessness. Providers’ and medically ill individuals’ tasks include identifying aspects of the individuals’ identities that transcend the illness or physical decline and seeing them for the individuals they have been, rather than the disease with which they live. Fruitful areas to explore are things that the medically ill person values, ways to continue to contribute that accommodate the illness, one’s legacy (ethical wills can be particularly useful here), religious/spiritual beliefs, evaluations of self-worth and sources of meaning and purpose. Chapter 3, The Cultural Context of Spirituality and Meaning (Strada), explores further some of the spiritual and existential issues with which individuals grapple at the end of life.

Mental health providers may find themselves needing to sit with and validate individuals’ sufferings while raising the possibility that life still can have meaning in the mist of suffering; that life still holds meaning and purpose enough to sustain continued existence. It is important to focus equally on what gives individuals purpose, value and meaning as sources of guilt, regret, remorse, and the need for forgiveness and reconciliation. Therapeutic approaches such as life review, Acceptance and Commitment Therapy (ACT), and Dignity Therapy and Meaning-Centered Group Psychotherapy (MCGP) are particularly useful to this end.

Dignity Therapy and Meaning-Centered Psychotherapy were developed specifically for individuals at the end of life to promote meaning-making, a sense of purpose and self-worth. Dignity Therapy is based on a model developed by Harvey Chochinov and colleagues that seeks to promote individuals’ desire to go on living in the face of impending death by helping them identify and share meaningful, important aspects of their lives, their hopes, and their wishes for their loved ones, life values, and future goals (Chochinov, 2002, 2006; Chochinov, Hack, McClement, Kristjanson, & Harlos, 2002; Chochinov, Hack, McClement, Kristjanson, & Harlos, 2005; Chochinov et al., 2002). Conversations are centered on three domains. The first domain covers concerns that result from the illness and threaten to, or actually impinge on, individuals’ sense of dignity. The second domain consists of a repertoire of beliefs (dignity-conserving perspectives) and behaviors (dignity-conserving practices). Dignity-conserving perspectives include issues related to continuity of self, role preservation, generativity/legacy, autonomy/control, maintenance of pride and hope, acceptance, and resilience or fighting spirit. Dignity-conserving practices consist of living in the moment, maintaining normalcy, and seeking spiritual comfort. The third domain is a social dignity inventory describing the quality of interactions with others that enhance or detract from individuals’ senses of dignity. The content of sessions is recorded, transcribed, edited, and eventually compiled into a document that can be bequeathed to an identified loved one (Chochinov et al., 2005).

Meaning-Centered Psychotherapy shares a similar focus to Dignity Therapy. Based on the principles of Viktor Frankl’s logotherapy, this approach seeks to enable individuals to make the most of whatever time they have remaining though an enhanced sense of meaning and purpose using a combination of didactics, themed discussion, and experiential exercises (Breitbart et al., 2010; Breitbart & Heller, 2003; Gibson, Tomarken, & Breitbart, 2006; Greenstein & Breitbart, 2000). Participants are assigned readings and homework tailored to specific meaning-centered themes.

A distinctive aspect of psychotherapy with individuals at the end of life is that it often requires modifications in practice, particularly in medical settings, and typically necessitates different use of the therapeutic context and relationship. Psychotherapy tends not to follow the typical, 50-minute outpatient model in which individuals are self-referred and request assistance. Mental health providers must be comfortable checking in with individuals, unsolicited, and learn how to engage individuals who may not conceptualize their symptoms in psychological terms and/or who are skeptical about mental health care, particularly from psychologists or psychiatrists. In addition, individuals may have fluctuating energy and cognitive function and their functional status can change rapidly. As a result, therapy goals may need to be very focused and time-limited, with the expectation that every session may need to stand on its own. Sessions may be brief but frequent, (e.g., three 15 minute check-ins) or infrequent but lengthy (e.g., monthly family conference for 75 minutes).

Related to the challenge of needing to rethink the structure of therapy is rethinking the process. Psychotherapy with people at the end of life may involve a greater pull for self-disclosure, though the guidelines for self-disclosure as being in service of the patient still apply. In addition, hospice and palliative care often demands flexibility, good distress tolerance, and a high tolerance for ambiguity and lack of structure. The pace is rapid and the manner in which issues unfold can be unpredictable. Particularly when working with hospitalized individuals, providers need to be comfortable seizing the moment and dropping planned activities if a family member unexpectedly arrives on the unit or a staff member requests assistance with an individual.

When working with individuals at the end of life, mental health providers can offer a space in which individuals are allowed to experience and express their feelings, without being told Don’t talk that way or Stay focused on the positive or without having the topic changed because it is too difficult for others to tolerate. Sometimes providers’ greatest interventions are to bear witness to the suffering, validate the experience, and affirm the individual’s humanity—complete with flaws, regrets, failings, goodness, resiliencies, and fundamental worth to others. Trying to fix or lessen the feeling can be invalidating, if not problematic. However, therapists do not have to be solemn all the time; individuals with advanced or terminal illness often welcome the opportunity to converse lightheartedly about life not just their impending death. See Kastenbaum (2000) and Schneidman (1978) for additional discussion of psychotherapy with dying persons. See Haley, Larson, Kasl-Godley, Neimeyer, and Kwilosz (2003) for a discussion of psychotherapy at end of life in the context of a broader discussion of roles for psychologists in end-of-life care.

Identify opportunities for completion of unfinished business, preparation for death, and bereavement. Providers will want to explore with individuals with advanced, life-limiting or terminal illness and their families whether they have said and done what is important to them and, if they have issues left unfinished, why. One helpful framework for thinking about unfinished business is outlined by Ira Byock in his book, The Four Things That Matter Most (2004). The fundamental tenet of the book is that although people cannot undo the past, they can express forgiveness, gratitude, and affection, thereby increasing the likelihood of healing and reconciliation. Byock exhorts that, it is never too late to say ‘I love you,’ or premature to say, ‘Thank you,’ ‘I forgive you’ or ‘Will you please forgive me?’ (pp. 4–5) . . . [and] to say good-bye in a way that affirms our relationship and acknowledges our connection to one another (p. 6).

Mental health providers can assist both individuals with advanced and terminal illness and their families in attending to unfinished business, which can be one of many factors that may put family members at risk for complications in the bereavement process (Kissane & Bloch, 2008). Other factors include secondary stressors (e.g., financial strains), multiple losses, the degree to which family members define themselves by their relationship to the ill person, and psychological vulnerabilities (Prigerson, Vanderwerker, & Maciejewski, 2008; Schulz et al., 2006; Tomarken et al., 2008). Unfortunately, when individuals are referred late to hospice, they have less opportunity to attend to these issues, which may put them at risk for complications in bereavement (e.g., Kelly et al., 1999). For example, one study found that hospice enrollment of three days or less before death may be a risk factor for later depression in bereaved caregivers (Kris et al., 2006). See Chapter 10, Complicated Grief (strada), for an overview of complicated or prolonged grief.

Family-focused grief therapy is a promising therapy approach that considers how to help families develop coping resources in order to adapt to changes in the family system that result from the illness and promote adaptation during bereavement (Kissane et al., 2006; Kissane & Bloch, 2008; Kissane, Bloch, McKenzie, McDowall, & Nitzan, 1998). Common issues addressed in this therapy include care provision, suffering, changes in intimacy, discussion of death and goodbyes, cultural and religious practices, needs of family members, historical influences on the family and grief (Kissane & Bloch, 2008). Chapter 4, Working with Family Caregivers of Persons with Terminal Illness (Feldman & Llamas), discusses additional strategies that may assist families in adapting to the stressors inherent in caring for individuals with advanced and terminal disease.

Treat and prevent distressing symptoms. As discussed earlier in the chapter, individuals at the end of life can be encumbered by physical and emotional distress. Distress is treated most effectively when both the underlying causes and meaning/significance of the symptom are considered. We provide a few illustrative examples.

Perceived burden. Individuals with advanced, life-limiting, or terminal illness often are acutely aware of the emotional and physical demands exacted by their illness on those family, friends, and even medical providers caring for them. Concerns about being a burden on others may evoke a desire to protect others and influence decisions regarding choice of place of care, advance directives, or even acceptance of treatment. Perceived burden is associated with loss of dignity, suffering, depression and a desire for hastened death (McPherson, Wilson, & Murray, 2007). Providers will want to explore how individuals with advanced, life-limiting, or terminal illness perceive and make sense of the impact of their illness on others, the accuracy of this perception, and the way in which it may be influencing their decisions. However, it is equally important to elicit caregiver input because, although caregivers acknowledge the demands of this