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.

Jahi McMath and her mother, Latasha Nailah Winkfield Instagram

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.