Why African-American seniors are less likely to use hospice
Black seniors are more likely than whites and Latinos to forgo hospice care. Due to deeply felt religious beliefs and a long history of discrimination in the U.S., African-American patients are often reluctant to plan for the end of their lives, and more skeptical when doctors suggest stopping treatment. Special correspondent Sarah Varney reports on efforts to change some of those beliefs.
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End-of-life planning is gaining favor with more and more Americans. But lagging behind this trend are African-Americans, who research shows are, more so than whites and Latinos, skeptical of options like hospice and advance directives.
Special correspondent Sarah Varney begins our report in Los Angeles.
This story was produced in collaboration with our partner Kaiser Health News.
Sarah Varney, Kaiser Health News:
Dr. Maisha Robinson, a neurologist at the University of California, Los Angeles, is on a mission to change how black seniors die in America.
Dr. Robinson grew up a pastor’s daughter in Tennessee. Now she’s working with pastors like Bishop Gwendolyn Stone in Los Angeles to urge black families to plan for the end of their lives.
Dr. Maisha Robinson, University Of California, Los Angeles:
If you look kind of in the Bible, all the people, of course, that Jesus healed, all died. They went on to die.
Right. It’s an awesome idea to remind people. They know, but of course they don’t want to hear it.
It’s not fun thinking about death.
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.
I believe that he’s got a home on high for me that’s not made with human hands.
But Stone says there’s a basis in Scripture for planning ahead.
And just like Jesus prepared his disciples for his death, we ought to be preparing our disciples for our death. Amen?
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, Duke University School Of Medicine:
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.
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. But here in Buffalo, New York, an influential group of African-American pastors and their wives are confronting the skepticism and fears about hospice in the black community through personal stories and prayer.
Narseary Harris and her husband, Pastor Vernal Harris lead the Prince of Peace Temple Church of God in Christ in Buffalo. Two of the Harrises’ three sons, Paul and Solomon, died from sickle cell disease, an incurable condition that causes the red blood cells to break down. Paul endured a painful and prolonged death at age 26.
In the African-American community, to put your loved one in a place like hospice, it was something that you never even thought of. It didn’t matter how ill your — the person was. We believe that, if they were, alive, it was our responsibility to take care of them until they passed.
When their next son, Solomon, grew gravely ill, Narseary says a palliative care specialist urged them to choose hospice.
He said, Mrs. Harris, Solomon doesn’t have a lot more time. And I really want to recommend hospice care for you. I said, ‘We don’t want hospice.’ He said, ‘Mrs. Harris, you don’t have to make a decision right now, but let me just introduce you to Hospice Buffalo.’ And I said, ‘OK, well, we can — we will do that.’ I said, ‘Solomon, you OK with that?’ And he said, ‘OK.’
He wanted to be cremated, and this is actually his urn.
Solomon moved into his parents’ home, and soon caregivers from Hospice Buffalo arrived.
They talked to Solomon. They explained what they were going to do, and Solomon said, ‘OK, so when do I have to go?’ And they said, ‘You’re not going anywhere.’