A Racial Gap in Attitudes Toward Hospice Care

Interesting. Wonder the degree to which it is similar in Canada? There is now and then anecdotes (see Family overjoyed as top court rules doctors must seek consent before taking a patient off life support) but have not seen any surveys:

It is an attitude borne out by recent federal statistics showing that nearly half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives — legal documents meant to help families make life-or-death decisions that reflect a patient’s choices. Some 40 percent of whites aged 70 and over have such plans, compared with only 16 percent of blacks.

Instead, black Americans — far more so than whites — choose aggressive life-sustaining interventions, including resuscitation and mechanical ventilation, even when there is little chance of survival.

The racial gaps are expected to widen when Medicare is expected to begin paying physicians in January 2016 for end-of-life counseling, and at a time when blacks and other minorities are projected to make up 42 percent of people 65 and over in 2050, up from 20 percent in 2000.

At the root of the resistance, say researchers and black physicians, is a toxic distrust of a health care system that once displayed “No Negroes” signs at hospitals, performed involuntary sterilizations on black women and, in an infamous Tuskegee study, purposely left hundreds of black men untreated for syphilis.

“You have people who’ve had a difficult time getting access to care throughout their lifetimes” because of poverty, lack of health insurance or difficulty finding a medical provider, said Dr. Maisha Robinson, a neurologist and palliative medicine physician at the Mayo Clinic in Jacksonville, Fla. “And then you have a physician who’s saying, ‘I think that we need to transition your mother, father, grandmother to comfort care or palliative care.’ People are skeptical of that.”

Federal policies surrounding hospice also arouse suspicion in black communities since Medicare currently requires patients to give up life-sustaining therapies in order to receive hospice benefits.

That trade-off strikes some black families, who believe they have long had to fight for quality medical care, as unfair, said Dr. Kimberly Johnson, a Duke University associate professor of medicine who has studied African-American attitudes about hospice.

Dr. Johnson said her black patients were more likely to believe there are actual religious prohibitions against limiting life-sustaining therapy, and that suffering can be redemptive, or “a test from God.” And those beliefs, she added, were “contrary to the hospice philosophy of care.”

But now some doctors and clergy members are trying to use church settings to reshape the black community’s views, incorporating the topic in sermons, Bible study groups and grief and bereavement ministries.

Dr. Robinson, who is black and a daughter of Tennessee pastors, has been helping pastors develop faith-based hospice guidelines. She tells them, “God can work miracles, yes he can, but even in hospice.”

That message recently rang out from the pulpit at God Answers Prayer Ministries, an African-American church in South Los Angeles, as Bishop Gwendolyn Coates-Stone tried a sermon theme on advance care.

“It’s such a great cost to hold on to some of those sicknesses and diseases that eventually are going to take us out,” she exclaimed into a microphone, bobbing and weaving in a swirl of royal purple robes. “Just like Jesus talked about his death and prepared his disciples for his death, we ought to be preparing our disciples for our death!”

A Racial Gap in Attitudes Toward Hospice Care – The New York Times.