End-of-Life Issues, Grief, and Bereavement

What Clinicians Need to Know

Sara Honn Qualls, Julia E. Kasl-Godley

• Publisher: Wiley
• Year: 2010
• ISBN:
  9780470881132
• Edition: 1
• Topic: Psychology
• Subtopic: Social Psychology
• Index: Psychology

A practical overview of clinical issues related to end-of-life care, including grief and bereavement

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 informative guide, editors Sara Qualls and Julia Kasl-Godley have brought together a notable team of international contributors to produce a clear structure offering mental health professionals a framework for developing the competencies needed to work with end-of-life care issues, challenges, concerns, and opportunities.

Part of the Wiley Series in Clinical Geropsychology, this thorough and up-to-date guide answers complex questions often asked by patients, their families and caregivers, and helping professionals as well, including:

• How does dying occur, and how does it vary across illnesses?
• What are the spiritual issues that are visible in end-of-life care?
• How are families engaged in end-of-life care, and what services and support can mental health clinicians provide them?
• How should providers address mental disorders that appear at the end of life?
• What are the tools and strategies involved in advanced care planning, and how do they play out during end-of-life care?

Sensitively addressing the issues that arise in the clinical care of the actively dying, this timely book is filled with clinical illustrations, guidance, tips for practice, and encouragement. Written to equip mental health professionals with the information they need to guide families and others caring for the needs of individuals with life-threatening and terminal illnesses, End-of-Life Issues, Grief, and Bereavement presents a rich resource for caregivers for the psychological, sociocultural, interpersonal, and spiritual aspects of care at the end of life.

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 ...

Table of contents

• Cover
• Contents
• Title
• Copyright
• Contributors
• Preface
• Chapter 1: Introduction to End-of-Life Care for Mental Health Professionals
• Chapter 2: Trajectories of Chronic Illnesses
• Chapter 3: The Cultural Context of Spirituality and Meaning
• Chapter 4: Working With Family Caregivers of Persons With Terminal Illness
• Chapter 5: Serious Mental Illness
• Chapter 6: Advance Care Planning
• Chapter 7: Pharmacologic Management of Pain
• Chapter 8: Nonpharmacological Approaches to Pain and Symptom Management
• Chapter 9: Grief and Bereavement Care
• Chapter 10: Complicated Grief
• Chapter 11: Health-Care Teams
• Chapter 12: End-of-Life Care in Long-Term Care Settings
• Chapter 13: Advocating for Policy Change
• Chapter 14: Physician-Assisted Suicide in the United States
• Chapter 15: Creating Ethics Conversations in Community
• Chapter 16: Professional Self-Care
• Chapter 17: Embracing the Existential Invitation to Examine Care at the End of Life
• Author Index
• Subject Index