Palliative Care for African Americans and Other Vulnerable Populations: Access and Quality Issues
Richard Payne, M.D.
Memorial Sloan-Kettering Cancer Center
The incidence rates for cancer among African Americans is 454/100,000 compared to an incidence rate of 394/100,000 for whites. The incidence rate of cancer among African Americans is increasing by 1.2 percent per year compared to a 0.8 percent increase per year for whites. African Americans have a 50 percent higher rate of myeloma and cancers of the esophagus, cervix, larynx, prostate, stomach, liver, and pancreas. The 1994 American Cancer Society (ACS) cancer mortality rate was also higher for African Americans than for Caucasians. Black men and women continue to experience higher incidence of and higher death rates from cancer than whites, according to recently published statistics. (Greenlee et al., 2001). Data generated from the ACS and the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) databases reveal that the death rate from cancer for blacks is 222 per 100,000 compared to 167 per 100,000 for whites. ACS statistics also show that over an eight-year period (1989– 1996) the five-year relative survival rate was 62 percent for Caucasians versus 49 percent for African Americans (Greenlee et al., 2001).
UNDERUTILIZATION OF PALLIATIVE AND HOSPICE SERVICES
In 1997, the death rate from all causes was 139.2 for blacks compared to 86.2 for whites (LaVeist et al., 2000). Despite higher death rates from cancer and presentation at later stages of disease, and similar statistics for
chronic obstructive pulmonary disease (COPD), renal diseases and AIDS, minority groups significantly underutilize palliative and hospice services. In 1990, 93 percent of patients utilizing the Medicare hospice nenefit were Caucasian (Christakis et al., 1996). The National Hospice and Palliative Care Organization (NHPCO) has concluded that less than 10 percent of all hospice patients are African American. In addition, less than 10 percent of patients utilizing hospice services in the national for-profit chains are minorities. Medicare data culled over an eight-year period (1992–1996) supports this conclusion: minorities make up only 14 percent of the U.S. population that is taking advantage of the Medicare hospice benefit. Consequently, costs for African Americans who are not taking advantage of the benefit in the last year of life are substantially greater. According to the Medicare Payment Advisory Commission (MedPAC), the average cost for African Americans in the last year of life was approximately $32,000 compared to $25,000 for Caucasians (Medicare Payment Advisory Commission, 2000). The MedPAC data did not show higher costs in the last year of life for other minority groups. In addition, MedPAC statistics also revealed a higher percentage of non-hospice inpatient deaths for minorities compared with Caucasians. These last two points need more careful review to understand the full implications for financing health care for African Americans and other minorities facing terminal disease.
Barriers to Utilization of Palliative and Hospice Care
If care is to be improved for African-American and other underserved groups when there is a diagnosis of a life-threatening disease or chronic debilitating illness that may end in death, knowledge of the reasons for the current underutilization of palliative care and end-of-life services must be clearly understood. Unequal access to care in general or a lack of access to palliative and end-of-life care services may be one reason for underutilization. Few physicians know about palliative care alternatives, so they are unable to advise their patients adequately and sufficiently. Another reason for underutilization of palliative care services in the African-American community may stem from a lack of knowledge of federal, state, and local benefits associated with end-of-life health care needs. A failure to address specific cultural and spiritual needs of patients that may not be articulated well or at all by the patient and family could also contribute to underutilization of these services.
Historical and societal factors also may act as barriers to the use of palliative and hospice care today in the African-American community
(Crawley et al., 2000). Abuses suffered during slavery and its aftermath (Jim Crow laws, segregated, second-class medical care systems, etc.) resulted in poorer management of diseases and more reliance on alternative or folk medicine. Medical experimentation, such as that documented in the National Public Health Service Syphilis Study at Tuskegee, has left a legacy of mistrust vis-à-vis clinical trials and other “experimental” forms of medical treatment that other groups may embrace as a last opportunity for cure, but that African Americans may view as denial of good medical care (Freimuth et al., 2001; Shavers et al., 2000). Added to this history are recent reports of unequal treatment or mistreatment and denial of best practices in the health care system (Freeman and Payne, 2000). Documentation such as this indicates that the mistrust reported by African Americans about the U.S. health care system is well founded in many instances.
This distrust may prevent many from being initiators of end-of-life care dialogues with their physicians or acceptors of offers such as palliative or hospice care; the former is not well understood, and the latter is deemed a “death sentence” and “giving up.” This distrust may be particularly acute in settings where so few of the health care professionals who enter these discussions with minority patients are themselves minority (Massad, 2000).
Because African Americans tend to have a higher incidence of violent deaths and higher death rates from cancer, AIDS, and other chronic illnesses, it is imperative that these communities be educated about palliative care and end-of-life preparatory issues. At present, denial of death (even terminal illness) may be viewed by the African-American community as a “healthy response,” as fighting to live at all costs. Communities must be educated to the choices that are (or should be) available and that a denial of death may not be the healthiest response to the end of life’s journey. Indeed, such a response may result in not getting the best care at the end of life. Conversely, it must be explained that palliative care does not mean “giving up” and dialogues about palliative care and end-of-life care are not a subterfuge for further denial of access to good medical care. Cultural and personal values must be respected, and physicians, allied health care professionals, and clergy must be trained to handle these discussions and the decisions patients and their families must face.
MINORITY ISSUES IN PALLIATIVE AND HOSPICE CARE
What role does a lack of access to health care play in shaping attitudes about end-of-life care? Studies report that African Americans are admitted to intensive care units (ICUs) less often than whites (Yergan et al., 1987). African Americans are less likely to opt for discontinuation of life support measures (Caralis et al., 1993). There is a strong perception that they will
be treated differently and receive inferior care if advanced directives have been signed (McKinley et al., 1996). Blacks are also more likely to opt for aggressive treatment interventions even in a persistent vegetative state and generally tend to question the “humanitarian motives” of predominately white hospice workers (Neuberger and Hamilton, 1990). Based on results of a survey, it appears that African-American physicians place a higher value on length of life than do Caucasian physicians. This survey also revealed that African-American physicians are more likely to support cardiopulmonary resuscitation (CPR), mechanical ventilation, dialysis, and artificial feeding for themselves if they were in a persistent vegetative state (PVS) (McKinley et al., 1996; Mebane et al., 1999).
PHYSICIAN INFLUENCE ON END-OF-LIFE CARE
Physicians play a critical role in the lives of their terminally ill patients. Yet the majority of physicians were not trained in medical school or in continuing education courses about caring for patients at the end of life, communicating effectively and compassionately with them and their families, understanding the impact of cultural differences in addressing medical treatment at the end of life, or the importance of utilizing the full spectrum of medical support professionals in caring for these patients. There appear to be significant differences in attitudes between African-American and white physicians about care at the end of their patients’ lives and their own (Mebane et al., 1999). For example, white physicians more often view tube feedings as “heroic” measures in terminally ill patients than do African-American physicians (58 percent vs. 25 percent). In this same study, 36 percent of white physicians accept physician-assisted suicide (PAS) as a treatment alternative, while only 26.5 percent of African-American physicians do. When asked about care for themselves at the end of life, this study also observed startling differences between white and black physicians. For example, if in PVS, African-American physicians were six times more likely than whites to request aggressive treatment. In a scenario in which the doctors might be brain damaged but not terminally ill, the majority of both groups did not want aggressive treatment, but African-American physicians were five times more likely than whites to request specific aggressive treatment (23 percent vs 5 percent) and white physicians were two times more likely to request PAS than African Americans (22.5 percent vs. 9 percent).
Although African Americans constitute 13.8 percent of the U.S. population only 2.9 percent of the physician work force are African Americans; 30 percent of African Americans are cared for by African-American physicians (Byrd et al., 1994).
IMPROVING ACCESS TO AND QUALITY OF PALLIATIVE CARE FOR AFRICAN AMERICANS—HOW DO WE MOVE FORWARD?
Next Steps: Immediate Implementation
Several activities are needed to improve access to and the quality of palliative and end-of-life care for African Americans and other underserved minority populations. Three activities that can be initiated relatively quickly should be put in place simultaneously across different community settings (urban, inner city, rural, etc.).
Palliative care units should be established in hospitals. In inner-city locations, end-of-life care for the poor could be initiated until hospice care becomes a more realistic and accepted option.
Teams of health care professionals across different settings need to be trained to understand palliative and end-of-life care and be funded to develop programs to provide this care.
Focus groups should be conducted in communities to gain a better understanding of the needs of patients and families.
A model program that incorporates these elements has been started in Harlem, at North General Hospital (NGH), in collaboration with Memorial Sloan-Kettering Cancer Center (MSKCC) (see Box 5-1). NGH was chosen as the site for this model program for three reasons:
There are already existing collaborations between NGH and MSKCC, and in fact, a $5 million gift from the Ralph Lauren Foundation was recently announced to support a collaborative cancer center.
North General Hospital, a 200-bed institution, is of “manageable” size to initiate and evaluate a program of this type. The educational programs and the pre- and post-intervention surveys are more feasible than they would be in the other two, much larger, Harlem hospitals.
NGH is a private hospital (not a part of the New York Health and Hospitals Corporation), and therefore, it will be easier to implement administrative changes and measure their effects in a less bureaucracy-laden system. However, once the effectiveness of these interventions has been documented, the model (or major components of it) could be replicated in public hospitals.
Research is needed to better understand the needs and preferences for end-of-life care of minorities, medically underserved and other vulner-
BOX 5-1 Memorial Sloan-Kettering Cancer Center and North General Hospital: Partners in Pain Management and End-of-Life Care in a Minority Community
North General Hospital (NGH) is embarking on an ambitious and definitive series of activities in the area of pain and palliative care. Under the direction of Dr. Harold Freeman, president and Chief Executive Officer of NGH, and Dr. Richard Payne, chief of the Pain and Palliative Care Program at Memorial Sloan-Kettering Cancer Center (MSKCC), NGH has established a new Pain and Palliative Care Program. This program has been an outgrowth of North General’s plan to establish a comprehensive cancer center; that center was recently awarded a $5 million grant from the Ralph Lauren Foundation. Below is a brief description of the current pain and palliative care initiatives at NGH and the collaborating partners. Evaluation of the outcomes of these developing models of care and service delivery will add significantly to our body of knowledge in these areas. 1. The Pain and Palliative Care Service is a comprehensive, multidisciplinary endeavor that opened in June 2000. The center has received support from the Ellen P. Hermanson Foundation, NGH, and MSKCC resources for initial staffing. As part of its mission and operation, the Pain and Palliative Care Service at NGH is training its physician, nursing, and support staff, has revised hospital policy and procedures; and has implemented an inpatient pain management consultative service and a weekly ambulatory clinic. The consultative service on pain management and ambulatory services will be available to North General Hospital patients 24 hours a day. This clinical program serves as a community resource providing expertise in palliative medicine for the greater Harlem area. For example, a series of formal and informal educational programs delivered by staff of the Pain and Palliative Care Service has targeted Harlem physicians and other health care providers. 2. The United Hospital Fund’s Community Oriented Palliative Care Initiative has funded a two-year collaborative program at NGH with MSKCC and the Visiting
able populations. We need to address health policy and financing barriers that prevent the utilization of end-of-life care support that is available. We need to know if demographics (age, social class, and education level) affect the attitudes and practices of these groups at the end of life.
The National Cancer Institute (NCI) should increase efforts to address disparities in access to cancer care, including end-of-life care (including many of the recommendations in the recent Institute of Medicine report The Unequal Burden of Cancer [IOM, 1999]).
NCI-designated cancer centers should provide plans to address equal access to cancer care services (including end-of-life care) in vulnerable populations. Demonstration projects should be funded to develop models of care delivery and evaluated to assess the effectiveness of care.
Nurse Service of New York (VNSNY) —the Harlem Palliative Care Network (HPCN). HPCN will work to (1) increase access to palliative care services for patients facing life-threatening illnesses and their families who reside in Central and East Harlem; (2) overcome cultural and environmental barriers among minority populations concerning timely intervention for life-threatening illnesses; (3) enhance the continuity and coordination of care through greater integration of community-based and institutional services; (4) improve the quality of life for Harlem patients through better pain and symptom management; and (5) provide support services to meet the emotional and spiritual needs of patients and their families. HPCN will achieve these goals by identifying Network Partners—consisting of faith-based organizations, social and community development agencies, and community health care providers—who will agree to assist in identifying patients and to provide services in the community for those patients.
3. HPCN will target patients with a diagnosis of progressive cancer, congestive heart failure, chronic obstructive pulmonary disease, end-stage renal disease, and AIDS in Central and East Harlem. This geographic area is the primary service area of NGH, and it will be the hub for inpatient, outpatient, and community-based palliative care services.
4. The “Initiative to Improve Palliative and End-of-life Care in the African-American Community” is supported by funding from the Open Society Institute’s Project on Death in America (PDIA). The Initiative brought together a group of professionals to begin to delineate and document historical, social, cultural, ethical, economic, legal, policy, and other factors that affect the attitudes toward, acceptance of, access to, and utilization of palliative and hospice services by African Americans. During a planning meeting in February 2000, four key barriers were identified: (1) mistrust of the health care system, (2) lack of effective end-of-life planning, (3) inattention to the spiritual aspects of healing and dying, and (4) viewing pain as a natural or expected part of dying. Plans have also begun toward a national conference, planned for late 2001, to consolidate and disseminate information concerning barriers to improving end-of-life care for African Americans and to suggest specific strategies for change.
Byrd WM, Clayton LA, Kinchen K, et al. African-American physicians’ views on health reform: results of a survey. J Natl Med Assoc 1994; 86:191–199.
Caralis PV, Davis B, Wright K, Marcial E. The influence of ethnicity and race on attitudes toward advanced directives, life-prolonging treatments and euthanasia. J Clin Ethics 1993 ; 4:155–156.
Christakis NK, Escarce J. Survival of Medicare pateints after enrollment in hospice program. New Engl J Med 1996; 335:172–178.
Crawley L, Payne R, Bolden J, Payne T, Washington P, Williams S. Palliative and end-of-life care in the African American community. JAMA 2000; 284:2518–2521.
Freeman H, Payne R. Racial injustice in health care. New Engl J Med 2000; 342:1045–1047.
Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T. African American’s views on research and the Tuskegee Syphilis Study. Soc Sci Med 2001; 52:797–808.
Greenlee RT, Hill-Gharmon, MB, Murray T, Thun, M. Cancer Statistics, 2001. CA Cancer J Clin 2001; 51:15–36.
Institute of Medicine (IOM). 1999. The Unequal Burden of Cancer. Haynes MA, Smedley BD, eds. Washington, D.C.: National Academy Press.
LaVeist TA, Bowie JV, Cooley-Qyuille M. Minority health status in adulthood: the middle years. Minority Health Today 2000; 2:46–53.
Massad LS. Missed connections. JAMA 2000; 284:409–410.
McKinley E. Garrett J, Evans A, Danis M. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med 1996; 651–656.
Mebane E, Oman R, Kroonen L, Goldstein M. The influence of physician race, age and gender on physician attitudes toward advance care directives and preferences for end-of-life decision-making. J Am Geriatrics Society 1999; 47:579–591.
Medicare Payment Advisory Commission. Medicare Beneficiaries Costs and Use of Care in the Last Year of Life, Final Report, May 1, 2000.
Neuberger BJ, Hamilton CL. Racial differences in attitudes toward hospice care. The Hospice J 1990; 6:37–48.
Shavers VL, Lunch CF, Burmeister LF. Knowledge of the Tuskegee study and its impact on willingness to participate in medical research studies. J Natl Med Assoc 2000; 92(12):563– 572.
Yergan J, Flood AB, LoGerfo JP, Diehr P. Relationship between patient race and the intensity of hospital service. Medical Care 1987; 25:592.