Race, religion and a sense of the role of the family
all play into end-of-life decisions for African-Americans, “and you cannot
disentangle them,” said Bullock, a professor and head of the department of
social work at North Carolina State University in Raleigh, N.C.
A new survey on end-of-life issues, recently released (Nov.
21) by the Pew Research Center’s Religion & Public Life Project, bears this
out: Blacks and Hispanics are twice as likely as white Protestants, Catholics
and people of no religious identity to insist that doctors do everything
possible to stave off death, even in the face of incurable disease and great
pain.
What’s more, the most recent statistics from the
National Hospice and Palliative Care Organization show hospice service is
overwhelmingly used (83 percent) by non-Hispanic whites. Less than 9 percent of
hospice patients were black, and less than 7 percent were Hispanic.
Bullock, who is an African-American Southern
Baptist, has tried to address end-of-life issues with a faith-based approach.
She’s partnered with churches to talk about advance directives and decisions
about aggressive treatment, palliative care (shifting from efforts to cure to
pain management in incurable cases) and hospice.
“I could talk
about a good death, but I couldn’t convince them that medical providers were
truly going to act on their behalf,” she said. Hospice may be the “gold
standard of care at the end of life,” but minorities are not easily convinced,
she said.
Bullock points to elderly African-Americans’
historic experiences for one reason they insist on aggressive treatment even in
severe pain with an incurable disease.
This is the generation that lived through
segregation and that remembered the infamous Tuskegee experiment, in which
black men were injected with syphilis and studied but not treated, she said.
People who overcome adversity by relying on their
faith in God are unlikely to change that in their last days, she said. “They
believe death is not the end for them and they will pass on to a better place.”
They also have a different understanding of
suffering.
“Suffering is not being able to feed your family,”
Bullock said. “Lying in a hospital bed is not suffering.”
George Eighmey made a similar observation during his
12 years as executive director of Death with Dignity in Oregon, the first of
four states that have legalized physician-assisted dying for terminally ill
patients.
Eighmey, who retired in 2010, said he saw no black,
Hispanic or Asian people inquire about the law before it was enacted, or after
when it allowed people to obtain a lethal prescription from a physician and
choose the day of their death.
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