Palliative and End-of-Life Care in the African American Community

African Americans and other minorities underuse palliative and hospice care, even when they have access to this care. Statistics from the National Hospice and Palliative Care Organization indicate that African Americans represent 8% of patients who participate in hospice care, as compared with 83% whites.¹ Explanations for the underutilization of palliative care and hospice services by African Americans has engendered much speculation, but few data have been collected to further the understanding of this important problem. To provide the basis for solutions to correct this current state of affairs, reliable data and a broader societal dialogue are needed.

In response to this problem, the Initiative to Improve Palliative and End-of-Life Care in the African American Community was formed to delineate historical, social, cultural, ethical, economic, legal, health policy, and medical issues that appear to affect African Americans' attitudes toward, acceptance of, access to, and utilization of palliative care and hospice services. In February 2000, an interdisciplinary working group of African American scholars and professionals met to begin defining a research, education, and policy agenda for the improvement of end-of-life care for African American patients facing death. We offer this commentary to further this discussion.

Among African Americans, the experiences and meanings associated with the pain and suffering of death and dying are complex and diverse. Shaped variously by historical and contemporary events, as well as by a range of sociocultural values and perspectives, issues surrounding the end of life can be perceived through seemingly contradictory perspectives. For instance, death is seen by some individuals as a struggle to be overcome. The legacy of slavery, abuses in medical experimentation, economic injustices, racial-profiling practices, and the disproportionate numbers of incarcerations, to name a few, reflect societal and ethical misconduct that has led to a general loss of credibility of many institutions, including the health care system. Death often has been associated with these societal patterns. For example, compared with whites and other minorities, African Americans have higher mortality rates from conditions such as cancer, cardiovascular disease, acquired immunodeficiency syndrome, other disease states and illnesses, and homicide, which have been correlated with social and environmental disparities.^{2 - 8} Paradoxically, the denial of death in the African American community can be seen as a healthy response to these forces. Yet, this stance may contribute to a misunderstanding of the goals of end-of-life care.⁹

By contrast, rich traditions within the African American community tied to religious and spiritual beliefs and practices reflect a view of death as a "welcomed friend," there to assist the decedent in the transition from an earthly to a heavenly existence.¹⁰ This perspective recognizes the inevitability of death that comes at the end of a life marked either by longevity and relatively good health until death or by prolonged suffering in the case of some individuals who are chronically ill. Those who have died may be referred to as having "gone home," a notion that views death as a transition rather than as a final state. This belief also can be found among various African traditions.¹¹

This spiritual view of a welcomed death, however, is not necessarily compatible with the goals of palliative care, which are to relieve physical, psychological, and spiritual suffering. On the contrary, some traditional Christian religious views regarding death held among many African Americans depict pain and suffering as not to be avoided but rather to be endured as part of a spiritual commitment.^{12 - 14} This view of death is similarly held by African American Muslims who adhere to traditional Islamic teachings that pain, sent by God to test one's faith, is to be endured.¹⁵ These values are not limited to religious perspectives; for example, the African American canon of literary and visual arts is replete with narratives of struggle and survival—images that reinforce the nobility of suffering. Lines from Maya Angelou's poem, Still I Rise, provide an example¹⁶ :

Out of the huts of history's shame
I rise
Up from a past that's rooted in pain
I rise.

Such images evoke a dignity and pride that is both central to and vital for African American identity. To improve palliative and end-of-life care in the African American community, it is important to understand how this ethic of struggle emerges when patients and their families face the crisis of death.

Views about death and dying among African Americans are not solely shaped by racial or cultural identity. Other factors, such as economic status, class or sociopolitical position, education, immigration status, sex, age, or urban vs rural background each may exert influences on attitudes and preferences regarding death and dying. Secondary socialization by the entertainment industry—in particular, music, television, and film—is another force that shapes and reflects beliefs and attitudes toward death and dying.^{17 - 19} Media images of death involving African Americans are disproportionately violent, as compared with whites. There is a paucity of images of African Americans that depict a dignified, comfortable death, compassionate care, or death from natural causes.^{20 - 22} Such skewed representation of death by the media provides challenges to education efforts for African Americans and the public at large.

An informed patient or family may be better able to participate in decisions about end-of-life care. Yet, like the general population, many African Americans lack knowledge about the kind of care offered through palliative care or hospice programs.^{23 - 24} Physicians may be a primary source of education for their patients, but they too may lack knowledge of the range of issues in palliative care. In addition, primary care clinicians also are the major source for hospice care referrals for all patient populations.²⁵ Yet, a 1990 survey of all US hospices found that most hospices have a lack of involvement of health care professionals who are minorities and a lack of clinician referral sources for minorities, resulting possibly from insufficient education of minority physicians about hospice care.²⁵ Furthermore, just as with other physician groups, the educational preparation in pain management and palliative care for minority physicians is often inadequate. African American physicians care for more minority patients than do other physicians,²⁶ and the impact of their lack of knowledge may significantly affect end-of-life care in these communities.

The role of the clergy and their degree of awareness of palliative care options similarly affects end-of-life care in the community. Religious leaders may be called to assist church members who are dealing with many of the complex issues surrounding death and dying. Yet, in a qualitative study of African American pastors, participants revealed a general lack of familiarity with hospice or palliative care services.²³ Furthermore, not all religious and spiritual leaders have developed the skills to help family members make these difficult decisions regarding issues such as withdrawing or withholding treatments that may be considered aggressive, intrusive, and futile. Training in clinical pastoral education may equip clergy with the competency to assess and manage distress and suffering. It also can provide the clergy with skills needed to foster effective partnerships with physicians and other members of the health care team.

Both the political and spiritual perspectives noted above (death as a result of social inequities and death as a welcomed transition) privilege the sanctity of life. From these positions, quality of life may be seen as that which can be defined existentially—not merely by one's capacity to function.^{27 - 28} Available tools that measure quality of life for patients who are dying do not adequately account for these values.^{29 - 30} Furthermore, neither the historical legacy of social injustice and unequal treatment nor the spiritual perspectives of death and dying are predictive in determining an individual's preferences for end-of-life care. Studies on ethnicity and attitudes toward life support suggest that contradictions arise when considering personal choices. For example, in a survey conducted among elders from 4 different ethnic groups, African American respondents could identify some situations in which they were in favor of withholding or withdrawing life support.³¹ However, when considering their preferences if they were the hypothetical patient in question, these same respondents were more likely, as compared with white respondents, to want to be kept alive on life support. This paradoxical stance may hold true across socioeconomic and educational lines. In a survey of African American and white physicians measuring attitudes and preferences for treatment under hypothetical conditions of persistent vegetative states or organic brain disease, African American physicians were more likely than white physicians to request aggressive treatments for themselves, despite having professional knowledge of the processes and outcomes of such aggressive life-sustaining interventions.³²

Issues of trust are commonly raised when discussing barriers to improving end-of-life care for African Americans. For example, the medical and bioethics literature often suggests that cultural mistrust is a significant influence on the attitudes and behaviors of African American patients toward advance directives and other end-of-life care issues.^{33 - 35} However, such conclusions are largely unsubstantiated.³⁶ Without supporting data, such generalizations result in an unfair and perhaps inaccurate portrayal of African Americans as inherently mistrustful. More importantly, framing the issue of trust as something that "needs to be cultivated in minority patients"³⁴ unfairly shifts the burden of change onto the patient. In so doing, those individuals who and institutions that exhibit insensitivity, neglect, injustice, or racism, are relieved, at best, of their responsibilities to work toward change.³⁷

Unequal access to all medical care, including hospice and palliative care, is a major obstacle for African Americans and other minority groups. Studies conducted on the disparities in health care, in general, have raised concerns about the complex role of race and ethnicity in access to and provision of services.^{2 - 7 ,38 - 45} Of particular relevance to end-of-life care are study results that show that African American patients receive less resource-intensive care than do other hospitalized patients, despite their preferences for more life-prolonging measures.^{31 ,35 ,46}

Although the hospice movement has grown in the United States during the last 30 years, its benefits have been widely underused by all minorities, due in part to ineffectual outreach programs in those communities.^{24 - 25} Financial disincentives also create barriers to access to hospices for disadvantaged patients. For example, the emphasis on home care presumes the availability of a full-time caregiver. Constraints in the Medicare Hospice Benefit program mandating in-home care particularly affect disadvantaged patients, including African Americans and those patients residing in inner urban areas where high proportions of persons may live alone or when family support for in-home care is limited.^{23 ,25 ,47}

The issues discussed herein call for an agenda to address the barriers to effective end-of-life care for African Americans. As a first priority, there is a need for more research and systematic review of relevant policies and regulations to understand and eliminate the causes of race-based health disparities. This has been identified as a major objective of the US surgeon general's Healthy People 2010 agenda.⁴⁸ National surveys are needed to describe the extent of disparities in the availability of and access to critical resources, such as pharmaceuticals and other health care services, essential for the delivery of quality palliative care. Research, both quantitative and qualitative, is needed to clarify and improve the knowledge of health care professionals of the demographic, socioeconomic, psychosocial, and medical factors that influence decisions regarding end-of-life care for African Americans and other minorities. Other studies should be designed to refine and validate culturally appropriate instruments used to measure subjective constructs, such as quality of life. Finally, rigorous studies are needed to examine the relationship and possible mediating variables by which race or ethnicity and personal and historical experiences influence an individual's concepts of trust in the health care system.

Recognizing that education is an important strategy for overcoming barriers, the development of new culturally appropriate models are needed to educate both African American patients and the health care professionals who serve them. Given the dearth of education for end-of-life care for physicians, nurses, clergy, social workers, lawyers, and policy makers, there is a need to create interdisciplinary learning opportunities. Such an approach would enable members of the health care team to learn how they can collectively manage the needs of dying patients and their families.

Constructive community and public dialogue regarding positive models and examples of quality end-of-life care also are needed. Recruiting public figures from within the African American community, such as religious, civic, and industrial leaders, as well as celebrities and athletes, to share their stories relating to the death of their loved ones may serve to educate the community about the importance of good palliative and end-of-life care. Similarly, the purveyors of popular culture need to be challenged to portray a broader range of images and narratives of death in the African American community.

For real changes to occur, a strong voice is critical to facilitate improvements in public policy. To that end, the Initiative to Improve Palliative and End-of-Life Care in the African American Community has further organized to provide the needed resources and infrastructure to promote these issues under the auspices of the Memorial Sloan-Kettering Cancer Center–East Harlem North General Hospital Palliative Care Collaborative. Additional activities by the Initiative to Improve Palliative and End-of-Life Care in the African American Community included the participation of health care professionals as panelists at the 30th Annual Legislative Conference of the US Congressional Black Caucus that took place on September 15, 2000. It also will host a national conference in fall 2001 in Washington, DC, in collaboration with the Tuskegee University's National Center for Bioethics in Research and Health Care. With support from the Milbank Memorial Fund, a position paper that frames the broad range of issues relevant to death and dying in the African American community will be produced for that meeting. These and other activities will continue to serve as the basis for discussions with both community stakeholders and decision makers in medicine, health care systems, politics, education, and business.

Although it is in its early stages of development, the significance of the Initiative to Improve Palliative and End-of-Life Care in the African American Community lies in the interdisciplinary breadth of perspectives represented and its location within the African American community itself. The themes discussed in this commentary are by no means comprehensive but represent the initial dialogue needed to create an agenda that addresses the wider research, education, and policy issues relevant to death and dying in the African American community.