End-of-Life Planning for African Americans: Big Challenges

Last night, PBS Newshour reported that while end-of-life planning is gaining favor with more
and more Americans, lagging behind this trend are African-Americans, who
research shows are more skeptical of options like hospice and advance
directives.

Here are a few excerpts:

SARAH VARNEY:
African-Americans are more deeply religious than other racial or ethnic groups.
Three out of four pray daily and more than half attend weekly church services.
In many black churches, the belief is that only God, not a doctor or a patient,
decides when a life ends.

SARAH VARNEY: There is
an ideal image of a good death in America, a clearly worded legal directive
reflecting a patient's wishes, avoiding painful and unnecessary medical
treatments. But that ideal image is often at odds with the realities of black
spiritual life and the lessons African- Americans carry forward from their
painful history.

As late as the
mid-1960s, segregated hospitals were common, and legal, throughout the United
States. Even in so-called mixed race hospitals, black patients were often
housed on separate floors. The notorious Tuskegee syphilis study, a
government-led experiment on black males, lasted until 1972 and killed more
than 100 men.

Dr. Kimberly Johnson
is a geriatrician and associate professor of medicine at Duke University. She
says, for African-Americans, the history of abuse is not a cultural artifact.
The toxic distrust of the health care system is still deeply felt today.

DR. KIMBERLY JOHNSON,
Associate Professor of Medicine, Duke University: They receive care in
facilities that were largely either segregated or facilities where they -- they
or their parents or their grandparents wouldn't have been allowed to have
received care. And, as a result, they are really suspicious of the kind of care
they receive.

SARAH VARNEY: Dr.
Johnson says black patients and their families then are understandably
skeptical when a physician suggests withdrawing medical treatment or stating
their wishes in advance.

Researchers have found
about 8 percent of African-Americans, compared to 43 percent of whites, have an
advance directive or living will. And, regardless of income, black patients are
more likely than whites and Latinos to forgo hospice and say they want to be
kept alive on life support, even when there's little chance of survival.

Hospice has been much
more successful reaching white middle-class patients. 

LORETTA JAMES, Los
Angeles: I want them to do whatever they can. That means they can resuscitate
me, to hook me up to a breathing machine, to take and put I.V.s in me, and keep
me hydrated. Do not starve me to death, like they did my mother.

SARAH VARNEY: Robinson
says doctors have to better explain their motivations when it comes to
end-of-life decisions.

DR. MAISHA ROBINSON:
It's the intention that is unclear, many times, in the minds of
African-Americans. I think we just have to be much clearer about why we're
trying to have those conversations, or we will continue to see a pattern of
people who really want life-sustaining interventions even when there's limited
potential benefit.

SARAH VARNEY: Changing
those beliefs seems a daunting challenge, especially when startling racial
health disparities remain. But, for pastors like Gwendolyn Stone, easing the
pain of death is a worthy calling.