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-
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Direct reprint requests to:
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
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