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Although the hospice movement has grown in the United States
during the last 30 years, 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.
It is commonly believed that this underutilization by
African Americans is due to their mistrust for the American societal
institutions marked by the legacy of slavery, abuses in medical
experimentation, economic injustices, racial profiling practices found not
only in the streets of American cities but also in the healthcare delivery
system.
The authors of the JAMA commentary write, however, that the
causes of hospice care underutilization by minorities may be several,
and "few data have been collected to further the understanding of this
important problem." They go on saying that "to provide
the basis for solutions to correct this current states of affairs, reliable
data and and a broader societal dialogue are needed."
In this context, 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
hospices services." In February 2000, an interdisciplinary working
group of African American scholars and professionals met to start defining a
research, education, and policy agenda aimed at improving the end-of-life care
for minority patients facing death.
The author affiliation of the JAMA commentary include
Stanford University (CA), Memorial Sloan-Kettering Cancer Center (in New
York), Cooper Green Hospital (Ala), Harlem Palliative Care Network, NY, M.D.
Anderson Cancer Center (Texas), and the Tuskegee University University
National Center for Bioethics in Research and health Care (Ala).
In an attempt to shed some light on this underutilization
issue, the authors addressed the religious and spiritual aspects that a lot of
times view death as a "welcomed friend", a "transition rather
than a final state", a moment of "pain and suffering not to be
avoided but rather to be endured as part of a spiritual
commitment."
They also discussed the secondary socialization by the
entertainment industry that disproportionately show -- when compared with
whites -- death involving African Americans as violent, with rare images of
dignified, comfortable death, compassionate care, or death from natural
causes; such skewed representation making education efforts a challenge.
The authors suggest that the lack of education at almost all
levels (patient and family, physicians, clergy, etc) as also a possible cause
of the hospice care underutilization by blacks, in addition to the lack of
involvement of minority health care professionals in the palliative care or
hospice programs.
Without minimizing the mistrust and individual
factors, the authors believe that, as in the case of the overall unequal
access to medical care that provides "less resource-intensive care than
do other hospitalized patients, despite their preferences for more
life-prolonging measures," African Americans receive also less
access to hospice and palliative care.
"More research and systematic review of relevant
policies and regulations to understand and eliminate the causes of race-based
health disparities are needed, including research, both quantitative and
qualitative to clarify and improve the knowledge of health care professionals
of the demographic, socioeconomic, psychosocial, and medical factor that
influence decisions regarding end-of-life care for African American and other
minorities," conclude the authors. "Constructive community and
public dialogue regarding positive models and examples of qualify end-of-life
care also are needed."
Reviewed by Carl Gilbert, M.D.
Address your comments or questions to LaVera
Crawley, MD, Stanford University Center for Biomedical Ethics, 701 Welch Rd,
Bldg A, Suite 1105, Palo Alto, CA 94304 (e-mail: lcrawley@standford.edu).
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