OMEGA, Vol. 50(2) 151-163, 2004-2005
OVERCOMING BARRIERS TO ACCESS AND
UTILIZATION OF HOSPICE AND PALLIATIVE CARE
SERVICES IN AFRICAN-AMERICAN COMMUNITIES
CAROLE A. WINSTON, PH.D.
PAULA LESHNER, MSW
JENNIFER KRAMER, MSW
GILLIAN ALLEN, MSW
University of North Carolina at Charlotte
While there is ample evidence to support the need for hospice and palliative
care services for African Americans, only 8% of patients who utilize those
services are from African-American communities. The underutilization of
end-of-life and palliative care can be attributed to several barriers to service
access including incompatibility between hospice philosophy and African-
American religious, spiritual, and cultural beliefs; health care disparities;
distrust of the medical establishment; physician influence; financial disincen-
tives, and hospice admission criteria. Suggestions for dismantling barriers to
care access include developing culturally competent professionals in the
health and human services, expanding the philosophy of hospice to include
spiritual advisors from client communities, and funding national initiatives
to promote improved access to health care at all stages in the life cycle of
members of all underserved communities.
Less than a decade ago, the two leading causes of death for African Americans1
and European Americans2were remarkably similar. Death from heart disease
? 2005, Baywood Publishing Co., Inc.
1The terms African American, Black American, and Blacks will be used interchangeably to
describe people of African descent who self-identify as African or Black American.
2The terms European Americans, White Americans, and Whites will be used interchangeably to
identify people of White European ancestry.
and cancer ranked first and second across both groups. However, today African-
Americans have a 50% higher mortality rate than European Americans for heart
disease and cancer (including presentation at later stages of the disease), with
and AIDS (Crawley et al., 2000; Henry J. Kaiser Foundation, 1999; Payne, 2001).
In 1999, because of the dramatic increase in the rates of HIV infection and AIDS
in the African-American community, AIDS was the sixth leading cause of death
for African-American males, and the tenth leading cause of death for African-
these statistics, is it clear there is a justifiable need for hospice and palliative care
in African-American communities (Reese, Ahern, Nair, O’Faire, & Warren,
1999). However, statistics from the National Hospice and Palliative Care Organi-
zation (NHPCO) indicate that less than 8% of hospice-eligible African Americans
actually utilize hospice care, compared to 83% of European Americans (Andino,
2001; Crawley et al., 2000). In sum, it appears that care for the terminally ill is
inadequate in Black communities.
It is important to understand the issues that prevent a significant segment of the
American populace from accessing hospice and palliative care services. The
nature of care individuals receive at the end of life reflects the values and ethics
of this society, making it incumbent upon those in the helping professions to
recognize and resolve existing service access disparities. This article will explore
some of the barriers to the utilization of hospice and palliative care for African
Americans, and how those barriers might be eliminated, from the perspective
of several professionals working in Charlotte, North Carolina, in the fields of
Health and Human Services.
exist, there are core Africentric attitudes, customs, and beliefs that bind those in
the Black community to one another despite their many differences. With that in
mind, there continues to be a need to fully understand the explanations for
underutilization of palliative care and end-of-life services in African-American
communities. Indeed, there have been few empirical studies to further the
understanding of this phenomenon.
A review of the literature suggests that service underutilization may be attribut-
care access that confront many members of the Black community. While examin-
ing the literature, several issues emerge that begin to explain why these services
are underused including: religious, spiritual, and cultural incompatibility with
hospice philosophy; disparities in health care; distrust of the medical establish-
152/ WINSTON ET AL.
Religious, Spiritual, and Cultural Beliefs and Practices
The meaning and experience of life for most African Americans are complex
and diverse, shaped by historical and contemporary sociocultural events including
slavery, racism, discrimination, and oppression. The experiences and meanings
associated with the pain and suffering that can accompany the end of life are
equally complex, diverse, and sometimes paradoxical. With regard to death and
dying, some religious and spiritual beliefs that are germane to African-American
culture tend to reflect a view of death as a “welcomed friend.” Pain and suffering
are not to be avoided but rather to be endured as part of a spiritual commitment
(Crawley et al., 2000). Viewed through this lens, there is an acceptance of the
inevitability of death that comes at the end of a life marked by both longevity and
a belief that death is merely a transition from an earthly to a heavenly existence
(Johnson, 1992). There is a “better life after death, without sickness, disease,
poverty, or hunger, a life in which victims of injustice will be compensated”
benevolent and has miraculous powers that can bring about recovery and extend
n.d.). This spiritual view of a welcomed death is often incompatible with the goals
of palliative care, which are to relieve physical, psychological, and spiritual
suffering that can attend the end of life. Indeed, many individuals in the Black
community view suffering as having been sent by God to test one’s faith. Thus, to
consider and accept hospice services might be counterintuitive to one’s most
Because the Black church continues to function as a significant religious,
political, and social institution in Black communities, the African-American
pastor is often sought for guidance when families are dealing with complex
issues surrounding death and dying. A qualitative study of African-American
pastors reveals their support of an African-American cultural belief system that is
opposed to accepting terminality, planning for it, or discussing it with others.
Further, the participants described a cultural value that one’s own people—church
and family— should provide care in terminal illness, rather than strangers (Reese
et al., 1999, p. 553).
Even as an omnipotent God determines when one dies, many Black Americans
perceive death as a struggle to be overcome. In the African-American community,
the need to struggle can overshadow concerns about quality of life (Goodkind,
2001). For example, several studies examining differences by race in patient
preferences for curative care end-of-life treatments report that African-American
patients tend to request more life-sustaining treatments than their White counter-
parts (Hallenbeck, 1999; Ita, quoted in Reese et al., 1999; Mebane, Oman,
Kroonen, & Goldstein, 1999; Payne, 2001; Thomas, 2001). Black Americans are
HOSPICE AND PALLIATION IN AFRICAN-AMERICAN COMMUNITIES/ 153
also more likely to opt for aggressive treatment interventions even when the
patient is in a persistent vegetative state (Neuberger & Hamilton, 1990). Not-
withstanding that African Americans are more likely to prefer aggressive life
prolonging care than White Americans, they are less likely to receive it (Borum,
Lynn, & Zhong, 2000). Mebane et al. (1999) found that physicians and patients
share the same patterns of preference by race, with African-American physicians
being more likely than White physicians to request aggressive treatments for
themselves in hypothetical scenarios, despite having professional knowledge of
the processes and outcomes of such aggressive interventions. The finding that
physicians and patients have similar patterns of preference by race suggests that
embedded cultural identity that values life and the hurdles one must overcome
to survive in a dominant culture. Paradoxically, the “denial of death”(Crawley
et al., 2000, p. 2518) can be understood as a healthy response to the experiences
of social and environmental disparities experienced throughout life; one fights
to live at all costs (Crawley et al., 2000).
Disparities in Health Care
Equal access to all medical care, including hospice and palliative care, has
been denied to members of the Black community through “targeted medical
neglect “ (Holloway, 2002, p. 3), practices of racial exclusion including segre-
gation (both de jure and de facto), and social and economic discrimination.
The Commonwealth Fund completed a survey that included 1,037 Americans
identifying themselves as African American or Black out of a total sample size
of 6,722. Even among African Americans who were employed, high poverty
rates and high uninsurance rates continued to erode their basic access to care.
Across all ages and more notably by age 50, African Americans were found
to be living with higher rates of chronic diseases. Although having a doctor
familiar with your health concerns is a key to obtaining quality care, 28% of
African-American adults said they had no regular doctor, compared with 19%
of White adults. Those patients who did have access to medical care reported
having significant difficulty securing access to specialists (Henry J. Kaiser
African Americans were more likely to cite hospital emergency rooms, clinics,
or “nowhere” as their usual source of care (22% of Black adults compared with
9% of Whites), and 22% of African Americans compared with 15% of White
Americans reported little or no choice in where they go for care. When emer-
gency departments services are sought, compared with Whites, Blacks experience
longer waits and are more likely to leave without being seen (Pear, 2004). Lack
of a regular health care provider greatly undermines quality of care, and African
Americans without a regular physician are less likely to receive preventive
154/ WINSTON ET AL.
services, and are less confident in and less satisfied with their medical care
(Collins, Tenney, & Hughes, 2002; Ebersole & Hess, 1998).
In studies where patients’ sociodemographic characteristics (e.g. education,
income level), insurance status (e.g., publicly or privately funded insurance),
and clinical factors (e.g., co-morbid illness, severity of disease) are controlled,
racial and ethnic minority patients are found to receive a lower quality and
intensity of healthcare and diagnostic services across a wide range of medical
procedures and disease areas leading to poorer outcomes and higher rates of
mortality (Geiger, 2000; Kressin & Petersen, 2001; Vence, 2001).
When African-American patients are seriously ill, in pain, and dying, they are
more often than not at risk for undertreatment. African Americans are less likely
than Whites to receive effective pain treatment across all healthcare settings,
including hospital emergency rooms, inpatient services, outpatient clinics, and
nursing homes (Bonham, 2001). It has been suggested that the failure to properly
treat pain may be due to the lack of an established patient-physician relationship
in emergency settings, and the influence of racial stereotypes on how physicians
undertake the treatment of Black patients, including failure to make sufficient
inquiry about the pain patients are experiencing. However, even when con-
trolling for insurance status and other socioeconomic factors, research reveals
that Black Americans are more likely than Whites to report undertreatment of
pain (Payne & Medina, 2001).
It is widely acknowledged that assessment of pain is the first step in its
management. African Americans are less likely than Whites to receive basic
hospital services such as patient-history taking, diagnostic tests, and physical
lead to assessment of pain and subsequent treatment. This disconnect in
communication between physicians and their African-American patients is
further evidenced by the physician’s failure to provide information about the
seriousness of their condition or to discuss test and examination findings with
them (Vence, 2001).
One study published in the New England Journal of Medicine found that
pharmacies in communities of color do not stock enough painkillers. Only
one in four drugstores in New York City’s predominantly Black and Hispanic
neighborhoods could immediately fill a prescription for opiate medications,
whereas nearly three out of four pharmacies in largely White areas could fill the
order. An accompanying editorial noted that this was just one of several studies
predominant factor (Payne & Medina, 2001; Memorial Sloan-Kettering Cancer
Center, 2002). Another barrier to effective pain management that transcends race
and culture is the refusal of some insurance companies to cover some pain
does not pay for oral drugs delivered outside the hospital setting (Memorial
Sloan-Kettering Cancer Center, 2002).
HOSPICE AND PALLIATION IN AFRICAN-AMERICAN COMMUNITIES/ 155
Distrust of the Medical Establishment
Early in the 20th century, Black New Yorkers distrusted Harlem Hospital, a
municipal hospital located in the heart of that African-American community.
A record number of Black people died from what should have been curable
diseases—tuberculosis and pneumonia—at a hospital that was referred to as “the
morgue” (Holloway, 2002, p. 82).
From 1932 until 1972, the National Public Health Service funded a project at
Tuskegee Hospital at Tuskegee Institute, Alabama, to study the effects of syphilis
on Black men. For 40 years, the physicians who took part in the study inten-
tionally withheld treatment even though there were curative drugs available at
the time (Holloway, 2002).
In 1999, the National Institutes of Health (NIH) funded a study to explore the
possibility that African Americans believe that the human immunodeficiency
virus (HIV) was developed by the federal government in order to exterminate
the Black population. Of the 520 Black adults sampled, 27% believed that
HIV/AIDS is a government conspiracy while 23% were undecided. Endorsing
theories of genocide were not related to age or income but to higher levels of
education. The researchers concluded that Black Americans who agree that
AIDS is a conspiracy against them tended to be “culturally traditional, college-
educated men who had experienced considerable racial discrimination” (Klonoff
& Landrine, 1999, p. 1).
While the previous examples are often referenced as the bases for the mistrust
of the medical establishment by many Black Americans, recent scholarship
suggests that the lack of trust in the health care system is “not sociological,
but rather highly situational, based on actual untrustworthy situations directly
experienced by patients and their families” (Korpivaara, 1999, p. 2). Crawley
et al. (2000) argue that the belief that cultural mistrust is a significant influence
on the attitudes and behaviors of African-American patients and their families
toward end-of-life care is unsubstantiated. Without supporting data, the authors
believe such generalizations result in an unfair and perhaps inaccurate portrayal
of African Americans as inherently mistrustful. More importantly, the authors
state that framing the issue of trust as something that needs to be cultivated
in communities of color unfairly shifts the burden of change onto the patient,
thereby relieving individuals and “institutions that exhibit insensitivity, neglect,
injustice, or racism . . . of their responsibilities to work toward change” (Crawley
et al., 2002, p. 2520).
Other problems resulting from mistrust of the medical community relate to
end-of-life planning. African Americans are less likely than White Americans to
complete a living will, appoint a durable power of attorney, or have an informal
discussion with another person about their preferences for end-of-life care.
Reese et al. (1999) report that African Americans are loathe to plan for death and
156/ WINSTON ET AL.
therefore do not routinely have formal wills or Do Not Resuscitate (DNR) orders,
make pre-funeral plans, or plan for dependents. The literature suggests that
many Blacks fear that if they sign advanced directives, they will receive inferior
medical care at the end of life; their race will render them disposable to a medical
community that has long mistreated and ignored them (Payne, 2001; Payne
& Medina, 2001).
Korpivaara (1999) reminds us that while advance directives, health care
proxies, and informed consent are central to the American healthcare system,
they are predicated on values that may not be shared by people with different
cultural beliefs, or those who do not share equal access to healthcare. Advance
directives assume that people are concerned about preserving their autonomy and
their ability to make decisions for themselves. Many African Americans, along
with three-fourths of the world’s population, believe that the group is the primary
with the Western European emphasis on autonomy, separation, and individuation
to delegate one person in the family to make decisions, violates their sense of
identity and family, their way of experiencing the world (Korpivaara, 1999;
care offered through hospice or palliative care programs. Physicians may be the
primary source of education for their patients, but they too may lack knowledge
of the range of issues in palliative and end-of-life care since the majority of
physicians were not trained in medical schools or in continuing education courses
about caring for the terminally ill. Also, there appear to be significant differences
in attitudes between African-American and White physicians regarding care at
the end of their patients’ lives. For example, in a study reported by Mebane et al.
(1999), 58% of White physicians view tube feedings as “heroic” measures in
treating terminally ill patients as compared with 25% of Black physicians. In
the same study, 36% of White physicians accept physician-assisted suicide (PAS)
as a treatment alternative, while only 26.5% of Black physicians do. Reese et al.
(1999) would argue that while many African Americans would rather care for
from the healthcare system, those patients who do seek care from the medical
establishment express real concerns about the dearth of African-American
physicians and medical staff working for healthcare providers who might be
more understanding and accepting of them. Proctor and Davis (1994) acknowl-
edge that when patients need to communicate about healthcare needs, it is
natural to prefer to talk with someone who shares a sense of culture, language,
and history in order to develop a trusting relationship.
HOSPICE AND PALLIATION IN AFRICAN-AMERICAN COMMUNITIES/ 157
Hospice Admissions Criteria and
Hospice admissions criteria and financial disincentives create barriers to
access hospice care for disadvantaged patients, many of whom are African
American. Several examples include: 1) hospice programs may not be available
for residents of small to midsize cities and rural areas; 2) Medicare regulations
require certification of terminality by a physician before hospice admission is
authorized; however, many African-American patients do not have their own
physicians and when they become critically ill, care is often sought in emergency
care settings; and 3) an admissions criterion emphasizing home care presumes
the availability of a full-time caregiver, making it particularly difficult for indi-
viduals to comply who live alone or where family support for in-home care is
limited (Crawley et al., 2000; Reese et al., 1999).
PERSPECTIVES OF HEALTH AND
HUMAN SERVICE PROFESSIONALS
In order to learn how health and human service professionals perceive these
challenges to access to palliative and end-of-life care in African American com-
munities, and how they might be eliminated, the authors interviewed a social
work professor, a hospice nurse, an oncologist, and a hospice community liaison
Social Work Professor/Clinician
The professor, an African American, was in agreement with the reasons offered
in an attempt to understand the barriers to utilization of hospice and palliative
care services by African Americans. She suggested, “Some individuals and
families believe that when palliation and hospice care is discussed, more tradi-
tional medical care is being withheld because of bias and prejudice” (personal
communication, June 16, 2003). Adding to the understanding of the effect of
African-American religiosity and spirituality on end-of-life decision-making, it
was noted that hospice and palliation imply futility and acquiescence. Many
African Americans hold that if one truly believes in God, it is important to
live until God decides the outcome.
Lastly, there was agreement with the research findings that there is a lack
of education and resources for this population that limits access to services.
Coupled with negative experiences with the medical establishment that engender
feelings of mistrust, many African Americans do not understand the philosophy
of hospice and palliative care and its mission to offer relief from physical,
psychological, and spiritual distress for the terminally ill and their families.
158/ WINSTON ET AL.
The interviewee, a European American, has been working with the terminally
ill and their families for many years, initially as a parish nurse and now
with hospice. She admits being aware of many of the barriers to care access for
African Americans. She notes that Black Americans share a family-oriented
culture, preferring to take care of their own throughout the life span, including
death. She has noticed they are hesitant to allow someone from outside the family
to become involved with caregiving when death is near, in part because of their
need for privacy and in part because of a reluctance to divulge information
regarding family, health status of family members, and issues related to the
terminally ill family member.
She believes that mistrust of the medical community is a contributing factor
to the disinclination to share the tasks of caring for a dying person with indi-
viduals outside of the home or community. She feels that African-American
families are often skeptical about allowing her into their homes and lives because
of their lack of confidence in the medical community and because she is White.
She notes that this racial impasse, as in other areas, is common in hospice
and palliative care scenarios. She attempts to bridge the gap by incorporating
members of the family’s community into her work with the patient and family.
She believes that working in conjunction with African-American professionals,
including other nurses and church pastors, helps to develop a trusting relationship
between her and the family.
Finally, she agrees there is a lack of education and information available to
all families about hospice care. She believes many Black Americans may be
well understood (personal communication, June 15, 2003).
Physicians’ experiences with patients appear to be as varied as the patients
and physicians themselves. The oncology specialist, a European American, notes
no resistance to hospice or palliative care among his African-American patients.
In his opinion, hospice and palliative care are not racial issues as much as they
are cultural and language barrier issues specific to certain immigrant groups
new to the region. He suggests that with these groups, barriers to be overcome
include language and cultural differences and learning to present palliative care
options with delicacy and sensitivity. Other factors that affect his patients’ recep-
tivity to hospice care are education and socioeconomic status. He notes that
when working with families, he encounters more resistance as the levels of
education and the socioeconomic status increase. He believes these patients
trust that their wealth and education will allow them to have more options for
end-of-life care than others who are less fortunate. It is not his experience that
barriers to utilization of hospice care experienced by African Americans mirror
HOSPICE AND PALLIATION IN AFRICAN-AMERICAN COMMUNITIES/ 159
barriers to other kinds of health services. He postulates that, regardless of race
or culture, without effective and empathic communication between physician
and patient, quality patient care will be diminished, and patients will not receive
appropriate and successful palliative care at the end of life.
Hospice Community Liaison Social Worker
As the Hospice Community Liaison, this licensed medical social worker
(LMSW), also European American, has unique responsibilities as a social work
professional. In her role, she provides education to individuals and groups,
raising awareness regarding hospice and end-of-life care. Like the oncologist,
she is unaware of existing barriers that specifically preclude African Americans
from accessing hospice, but she is aware that there is a general resistance to
hospice care from anyone with a terminal illness. She notes that just one-fifth of
all people suitable for hospice care in this community were enrolled with hospice
when they died. When asked how she thought more community residents could
learn about the benefits of hospice care, the interviewee described a program that
is underway where hospice has partnered with a community program to train
members of the African-American community as facilitators in the preparation of
advance directives, and to answer questions about end-of-life care (personal
communication, June 13, 2003).
is rooted in the confluence of historical, cultural, and structural impediments that
care services is not just a question of creating more services, but a matter of
are conceptualized and delivered to members of underserved communities. Reese
obstacles that impede access to hospice care for Black Americans, including using
churches as referral sources, providing hospice care to African Americans in
nursing homes, developing programs to follow patients from active treatment to
palliative, and keeping patients and family members informed seeking their
input about every aspect of the treatment plan. We would concur with these
recommendations while adding a few of our own:
• Members of African-American communities must be educated about the
importance of good palliative and end-of-life care. Public awareness cam-
paigns must be created using individuals from the community as hospice
educators, spokespersons, outreach workers, and liaisons.
there is a critical need to develop interdisciplinary learning opportunities for
160/ WINSTON ET AL.
healthcare professionals, attorneys, clergy, and social workers that will
provide services to those individuals and families as they move toward
end-of-life decision-making. The teaching must include content on African-
American cultural traditions, values, beliefs, and attitudes so that service
providers will better understand and acknowledge the effects of racism,
discrimination, and bias on patient participation in and response to inter-
ventions. The differences between core European-American cultural values
of individualism and self-determination versus the Africentric emphasis on
decisions are considered.
• It will be important to recruit and retain Black professionals who already
understand the significance of racial and cultural variations in the experience
of death and dying, to serve as physicians, nurses, and social workers.
• Hospice philosophy will need to expand to allow spiritual advisors from
the patient’s religious community to serve as the spiritual guide in lieu of the
religious representative made available through hospice.
• It is critical that public policy reflect the specific needs and challenges faced
by members of underserved communities as they face the end of life. To that
end, national initiatives must be funded to promote efforts to improve access
to healthcare at all stages in the life cycle to members of all underserved
Clearly, cultural competence among professionals that allows for the develop-
ment of trusting relationships must be at the core of efforts to eliminate access
barriers to supportive end-of-life services. At the very least, there must be a
concerted undertaking to develop laws and procedures that eliminate persistent
discriminatory practices and insensitive treatment directed at persons of color.
The only way this can be accomplished is by recognizing and acknowledging
the impact of race, culture, and minority status on a community’s worldview.
Cookie-cutter services that fail to consider the contextual domain in which
death and dying occur are likely to be rejected by those who most need assistance
at the end of life. Racial and cultural diversity must be among the dynamics
that inform rather than impede the restructuring of social interventions.
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Dr. Carole A. Winston
University of North Carolina at Charlotte
College of Health and Human Services
Department of Social Work
9201 University City Boulevard
Charlotte, NC 28223
HOSPICE AND PALLIATION IN AFRICAN-AMERICAN COMMUNITIES/ 163