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.
I have been a Volunteer Ambassador for 23 years and have never found Hospice to have anything but compassion to any and ALL people. So sorry for his experience but it’s not the norm.
I think that The Tuskeegee Syphilis Experiment, conducted over a forty year period by the US Department of Public Health had much to do with permanently damaging Black Americans’ trust in the US medical community. You can read about it in detail here:
Several hundred sharecropper’s who had contracted syphillis were followed by the Department of Public Health, for what they were told was “Bad Blood”, in order that researchers could understand the long term effects of syphillis. Even when penicillin, which cures syphilis, became available, the men remained untreated for the sake of the study. The study was not discontinued until 1972. The study is a standard topic of conversation in every medical ethics class held in every medical school and nursing program in the country, but it is also important to remember that when it was exposed to the general public it was a graphic illustration that Black people were being mislead about their health, denied proper treatment and were basically guinea pigs for science.
The other phenomenon that I found as a hospice nurse in the black families who I interacted with as a hospice/palliative care nurse, was that many of these families had a strong religious faith, and life was something very sacred and worth preserving at all costs. This was in contrast to a general trend toward less religious sentimentality in the white families I interacted with. These are gross generalities, but observable in my cohort of clients.
Notice that the author does not mention that at all. You are assuming something that is simply not in the evidence, which is fine, but hardly scientific.
The research into end of life care for this community is more along the lines of the actual pieces that this report quotes not what you are suggesting.
I know it is in the zeitgeist, but it is our duty as adults to rely on the rational objective work not the “feelz”.
StatNews has gone off the clickbait feelz before facts precipice and we are all paying the price. Which is a shame since aside from the inflammatory headline there are some really serious and interesting points in this article that would help improve the lives of the community.
You just have to shake your head and hope the intern they are letting write the headlines graduates and becomes a barista.
Juan, My comment about the Tuskeegee Syphilis Experiment is meant to illustrate why African Americans may have a generalized mistrust of doctors and health care. If you believe that there exists a second class system, or one that gives medicine that works “just to white folks”, you are going to have anxiety that hospice programs, when they are offered as an alternative to curative care, may just be a way of railroading black patients into substandard care. This of course is inaccurate. Hospice programs have been shown to be efficacious, and people who enroll in hospice programs actually live longer than terminally ill patients who do not.
Lastly, if your religious experience is that Life is sacred and a gift from God, then it stands to reason that one might perceive that only GOD can end it. If a family member is asked to consider taking a slowly dying patient off of a respirator and this is perceived as hastening this process, it can be met with an understandable resistance.
Why did you chose a racialist click bait title that seems to have little relation to the piece you presented? Is this the way academia is going? Maybe first physician heal thyself before you march on Washington.
I have lost my husband of 60 years this week in hospice. I will ask my children to avoid placing me in hospice when I am dying.
Marjorie, if I may ask, why are you against hospice? Did you have a bad experience?
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