Lifestyles (4)
Are African Americans Wary about Hospice Care?
African Americans and other minorities under-use palliative
and hospice care, even when they have access to this care, according to a
medical commentary published in JAMA, November 15, 2000 -- Vol. 284, No. 19 .
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 affiliations 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 shows -- when compared with
whites -- death involving African Americans as violent, using rare images of
dignified, comfortable death, compassionate care, or death from natural
causes; and 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).
For Printer Friendly Page,
Click here
| For A
Related Story On Hospice Care in Blacks:
Click here |
Dispelling
the Myths of Hospice
Care
By: Amy
Doud, BSW and Linda Simmermacher, RN
Choosing hospice care for yourself or a loved one can be a
difficult decision. The decision can be easier when you have a full
understanding of what hospice can offer. The following are a list of
some common myths related to hospice.
Myth: Hospice is a
place.
Fact: Hospice is
a philosophy of care that focuses on comfort and quality of life during the
last six months of a terminal illness.
Myth: Hospice is
a facility where you go to die.
Fact: Hospice
care can actually be provided in a variety of settings. These include a
person's home, a nursing's home, an acute care hospital or a specific unit
designated for hospice care. In many cases, hospice patients may use
all of these settings as their condition changes during the course of their
illness.
Myth: Hospice is very
expensive.
Fact: Hospice
services are covered 100% by Medicare and Medicaid. This is usually true
of private insurances as well. Hospice can actually decrease your
medical expenses by covering medications, equipment and supplies.
Myth: Choosing Hospice
care means giving up your current physician.
Fact: Although
there are qualified physicians on staff with hospice, you maintain the freedom
to choose the doctor with whom you feel most comfortable.
Myth: There are no
differences between hospice and home health services.
Fact: Hospice is
designed for terminally ill patients with the goal of aggressively treating
symptoms such as pain, nausea and vomiting. Hospice care is provided by
a team of experts that treat physical as well as psychological and spiritual
concerns of patients and families. Home health services are more
specific and time-limited. They are designed to rehabilitate or cure.
Myth: Hospice is for the
last few days of life.
Fact:
Hospice is a six month benefit. An early referral can significantly
enhance quality and comfort in the life of patients and their families by
utilizing the many services can offer.
If you or a loved one is interested in receiving more
information regarding hospice benefits, please write us through: messagecenter@allaboutblackhealth.com
About the Authors: Amy Doud, BSW is a representative of
VITAS Hospice ; Linda Simmermacher, RN, is a HIV Research Nurse and a former
VITAS Hospice team manager.
Home Page
If you have a web page and can write a classified ad, you stand to
create massive traffic to your own site by joining
