Jahi’s Family Reflects Deep Mistrust of End-of-Life Decisions 

With a legacy of forced sterilizations, syphilis experiments and devalued lives, blacks have legitimate reasons for suspicions about who is pulling the plug.

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Jahi McMath and her mother, Latasha Nailah Winkfield

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Anyone following the case of Jahi McMath, the California teenager declared brain-dead after an operation at an Oakland, Calif.-area children’s hospital went awry, awoke Monday to substantive news.

After weeks of legal wrangling, the girl was transferred out of the hospital Sunday to an undisclosed facility. But beyond the emotionally wrenching details of the McMath case, what’s happened to Jahi and her family has directed the national spotlight to a scarcely discussed but critical set of medical and ethical questions.

In a country where end-of-life medical discussions have been increasingly dominated by the debate about when medical care can and should ethically be withdrawn, the McMath family has become an exemplar of an alternative set of concerns common in black America.

What measures should a family take to sustain a critically ill or even clinically dead relative? Did the relative receive the very best medical care possible, and will they continue to do so if the family agrees to disconnect ventilators or other organ-supporting machines? How long should they hold out hope for a miracle? And what, if any, role should a hospital and clinicians have in determining when it should all end?

A November Pew Research Center poll found substantial differences in the amount, timing and type of medical intervention that black and white Americans believe to be appropriate. In fact, only 33 percent of blacks said that there are circumstances in which patients should be allowed to die, compared with 65 percent of non-Hispanic white Americans. Another 61 percent of blacks told Pew researchers that doctors should be obligated to continue and provide any type of care possible, while just 26 percent of whites agreed.

“As large as those gaps appear, it’s also consistent with what we have long known,” said Cary Funk, a senior researcher at Pew. “Survey after survey has shown strong race and ethnic differences of opinion about end-of-life care. That much we know.”

To put it simply, while many white Americans have become increasingly concerned about the ability to reject, refuse or remove medical care, African Americans remain deeply concerned with access to care, even at the very end.

Jonathan Moreno, a medical ethicist who worked in the late 1980s and ’90s at the State University of New York Downstate Medical School, a Brooklyn, N.Y.-based hospital and teaching facility that served mostly black patients, said the hospital often found itself dealing with brain-dead patients and families unable or unwilling to accept exactly what that meant.

Brain death—a state defined by a total lack of all brain function and activity from which there are no documented cases of recovery and total organ failure inevitably follows—had only been formally defined by researchers in the late 1960s, Moreno said.

Even when Moreno occasionally spoke with groups of high school students about his work and end-of-life care questions, students often raised questions about the possibility that doctors may give up on black patients too soon or do so in order to harvest their organs. Most were at least somewhat aware of the human experimentation and exploitation that have been part of the black medical experience in the United States.