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medical discussions have been increasingly dominated by the debate about when medical care can and should ethically be withdrawn, the McMath family has become an exemplar of an alternative set of concerns common in black America.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.
“Did that mistrust influence what people thought they needed to ask for,” Moreno said, “expect and demand when they were facing end-of-life decisions? The answer is maybe. It’s hard to say.”
Over the years, hospitals have developed clear policies that align medical technology with human concerns, procedures for removing patients from life-supporting equipment and assuaging the concerns of patients' relatives. That work has made conflicts between hospitals and families far less common, Moreno said.
But where Moreno sees evidence that hospitals are doing a better job communicating with black patients and their families, University of Pennsylvania legal scholar and sociologist Dorothy Roberts does not.
Hospital officials have publicly referred to Jahi as a “dead body,” insisting that treating her would be unethical, Roberts said. Stories about Jahi’s situation have implied that the family’s position is connected to scientific ignorance, irrational combativeness and superstition.
The reality is that African Americans are aware of the often limited value of black life in America, Roberts said. In early America, the value of African-American life was typically defined by what sort of loss their death or injury would cause a slave owner, said Roberts, who studies race and bioethics.
Some of the country’s earliest human experiments were conducted on enslaved black women. Beginning in the 1930s, government-funded researchers withheld treatment from patients suffering from syphilis to study the disease’s effects. And until the 1970s, several states maintained programs that forced poor, disabled and African-American women to undergo sterilizations.
In 2002 the Institute of Medicine found that African-American patients are more likely to receive undesirable medical treatments, such as lower-limb amputations, and less likely to receive lifesaving cardiac bypass treatment, dialysis and other treatments than white patients with the same health challenges, insurance status, income and age.
Typically juries award smaller amounts of money to families of black victims in wrongful death and other injury claims, Roberts said, as if a black life has less value.
And a study published in the journal Pediatrics late last year found that black and Hispanic children were substantially less likely to receive medication to relieve pain than white children who all came to the hospital in serious distress. The study reviewed records detailing the treatment received by nearly 2,300 young patients.
“When you understand not just the history but the ongoing way in which black life is devalued,” Roberts said, “you begin to understand that asking and expecting any and all medical interventions possible, no matter what, is anything but irrational.”
Janell Ross is a reporter in New York who covers political and economic issues. She is working on a book about race, economic inequality and the recession, due to be published by Beacon Press next year. Follow her on Twitter.