The medical community has long known that African-Americans resist hospice care at far higher rates than other groups. But Dr. Ivan Zama, a hospice and palliative care physician, felt like he could still change some minds when, in 2010, he was asked to address a group of African-Americans at an assisted-living facility in Maryland.
Zama, who is black and was born in Cameroon, prepared his most persuasive slides. He enjoyed a warm introduction from a facility volunteer. Then he made his case.
“All of them looked at me with a cold face,” he said. “And then this volunteer takes over for me, stands up, and says, ‘God is good!’ And everybody’s like ‘A-MEN!’”
Zama, who is amiable and fit, with a thick accent, laughs now at the memory.
“So afterwards I asked her, ‘What the hell did I do?’ And she said, ‘Ivan, you were not talking to them. You were talking to your academic staff. You have to come down to the people.’”
Turns out, it was much more than just that.
Medical researchers who are working to unpack the issue view minority access to hospice care as a matter of social justice. It’s typically paid for by the government, can reduce patient suffering, and relieve family members of the burdens of caring for a dying loved one.
Why should African-Americans continue to suffer more at life’s end than others?
There’s a lot to sift through, starting with the medical industry’s long and at times ugly history of neglect and abuse of blacks.
Doctors can also fail to account for the pervasive belief among many African-American faithful that God has an ability to heal the sick through miracles.
Finally, there’s the reality that some in tighter-knit African-American communities can direct harsh judgments toward those who choose hospice. Some see hospice as an abdication of caretaking responsibilities, at best, or, at worst, a hastening of a loved one’s death. (Research actually shows hospice patients live longer than those who opt for more aggressive end-of-life treatments.)
Patrick Dillon, a Kent State University communications professor who has researched this topic, said some who opted for hospice care faced accusations of rejecting the “we-take-care-of-our-own” ethos that is common in many African-American families.
“It’s caused fractured relationships with friends, family, people in the church,” he said. “There’s a social risk associated with this decision.”
Dillon said that physicians who would approach African-Americans about the benefits of hospice care would do well to understand that there are often many more people affecting the decision than are visibly present.
Focusing on the idea that hospice is a valuable tool for taking care of a family member — and not an abandonment — may help. It would be even better if the message were echoed by a local clergy member or another trusted member of the community who is not a physician.
There’s a growing appetite for ideas like these among black doctors who serve those at life’s end. At a national meeting of palliative care and hospice clinicians in February, Dr. Alvin L. Reaves, of Regional Medical Center in Orangeburg, S.C., organized the first meeting of a group of black professionals, patients, and families in the palliative care community.
Roughly 40 others attended, trading tips about what worked, and what didn’t, in their respective practices.
Many things don’t work, Zama said after the meeting.
Zama took away some ideas, he said, and offered some of his own.
He has, at times, relied on his Catholic background to convince patients and family members that hospice does not run counter to Christian tenets, pointing out that Pope John Paul II chose to die at home without life-extending measures. (Greg Schleppenbach, a spokesman for the United States Conference of Catholic Bishops, called hospice “laudable and beautiful.”)
That approach is in keeping with a method that Zama said he developed not long after his hospice presentation debacle. In his second presentation — this time to a different group — he ditched the PowerPoint.
“I walked in there and I said, ‘You know, God says that we all have a mission.”
He paused, and hoped.
Correction: an earlier version of this article incorrectly referred to Dr. Alvin L. Reaves’ affiliation with Emory University. It is his past employer, not his current one.