A Story about Death, Medicine, Race, and Philosophers

A 13-year old African-American girl goes to the hospital for a tonsillectomy. What ends up happening is heartbreaking, infuriating, surprising—and, in part, a result of the work of philosophers and bioethicists.

The story is recounted in “What Does It Mean To Die?“, an outstanding article in The New Yorker by Rachel Aviv. I’d recommend reading it before continuing here.

The article raises questions regarding hospital procedures, racism in medical contexts, and other issues, but its main focus is on the definition of death and its real-world implications.

The story is set in California. As Aviv points out, “California follows a version of the 1981 Uniform Determination of Death Act, which says that someone who has sustained the ‘irreversible cessation of all functions of the entire brain, including the brain stem, is dead.'”

But that hasn’t always been the policy. Aviv recounts some of the history leading up to that:

Until the nineteen-sixties, cardio-respiratory failure was the only way to die. The notion that death could be diagnosed in the brain didn’t emerge until after the advent of the modern ventilator, allowing what was known at the time as “oxygen treatment”: as long as blood carrying oxygen reached the heart, it could continue to beat. In 1967, Henry Beecher, a renowned bioethicist at Harvard Medical School, wrote to a colleague, “It would be most desirable for a group at Harvard University to come to some subtle conclusion as to a new definition of death.” Permanently comatose patients, maintained by mechanical ventilators, were “increasing in numbers over the land and there are a number of problems which should be faced up to.”

Beecher created a committee comprising men who already knew one another: ten doctors, one lawyer, one historian, and one theologian. In less than six months, they completed a report, which they published in the Journal of the American Medical Association. The only citation in the article was from a speech by the Pope. They proposed that the irreversible destruction of the brain should be defined as death, giving two reasons: to relieve the burden on families and hospitals, which were providing futile care to patients who would never recover, and to address the fact that “obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation”…

In the next twelve years, twenty-seven states rewrote their definitions of death to conform to the Harvard committee’s conclusions. Thousands of lives were prolonged or saved every year because patients declared brain-dead—a form of death eventually adopted by the United Kingdom, Canada, Australia, and most of Europe—were now eligible to donate their organs. The philosopher Peter Singer described it as “a concept so desirable in its consequences that it is unthinkable to give up, and so shaky on its foundations that it can scarcely be supported.” The new death was “an ethical choice masquerading as a medical fact,” he wrote.

That only some states adopted the Harvard committee’s definition of death meant that “people considered alive in one region of the country could be declared dead in another.” There was a push for uniformity:

In 1981, the President’s Commission for the Study of Ethical Problems proposed a uniform definition and theory of death. Its report, which was endorsed by the American Medical Association, stated that death is the moment when the body stops operating as an “integrated whole.” Even if life continues in individual organs and cells, the person is no longer alive, because the functioning organs are merely a collection of artificially maintained subsystems that will inevitably disintegrate. “The heart usually stops beating within two to ten days,” the report said.

On the President’s Commission was a philosopher, Daniel Wikler (Harvard). Aviv interviewed him for her article:

He didn’t think the commission’s theory of death was supported by the scientific facts it cited. “I thought it was demonstrably untrue, but so what?” he said. “I didn’t see a downside at the time.” Wikler told the commission that it would be more logical to say that death occurred when the cerebrum—the center for consciousness, thoughts, and feelings, the properties essential to having a personal identity—was destroyed. His formulation would have rendered a much broader population of patients, including those who could breathe on their own, dead.

Despite Wikler’s reservations, he drafted the third chapter of the report, “Understanding the ‘Meaning’ of Death.” “I was put in a tight spot, and I fudged,” he told me. “I knew that there was an air of bad faith about it. I made it seem like there are a lot of profound unknowns and went in the direction of fuzziness, so that no one could say, ‘Hey, your philosopher says this is nonsense.’ That’s what I thought, but you’d never know from what I wrote.”

While Wikler appears to have thought the bar they set for death was too high, Alan Weisbard (Wisconsin) who was also on the commission (as its assistant legal director) seemed to have reservations in the opposite direction:

He said, “I think that the people who have done the deep and conceptual thinking about brain death are people with high I.Q.s, who tremendously value their cognitive abilities—people who believe that the ability to think, to plan, and to act in the world are what make for meaningful lives. But there is a different tradition that looks much more to the body.” The notion of brain death has been rejected by some Native Americans, Muslims, and evangelical Protestants, in addition to Orthodox Jews. The concept is also treated with skepticism in Japan, owing in part to distrust of medical authority. Japan’s first heart transplant, in 1968, became a national scandal—it was unclear that the donor was beyond recovery, or that the recipient (who died shortly after the transplant) needed a new heart—and, afterward, the country never adopted a comprehensive law equating brain death with the death of a human being. Weisbard, a religious Jew, said that he didn’t think “minority communities should be forced into a definition of death that violates their belief structures and practices and their primary senses.”

Aviv discusses the research of neurologist Alan Shewmon (UCLA). Shewmon had defended the concept of brain death, but felt it lacked justification, and began to research cases in which people “lived for months or years after they were legally dead.” He found 175 of them. Aviv writes:

Shewmon’s research on what he calls “chronic survival” after brain death helped prompt a new President’s council on bioethics, in 2008, to revisit the definition of death. The council’s report referred to Shewmon’s research thirty-eight times. Although it ultimately reaffirmed the validity of brain death, it abandoned the biological and philosophical justification presented by the 1981 President’s Commission—that a functioning brain was necessary for the body to operate as an “integrated whole.” Instead, the report said that the destruction of the brain was equivalent to death because it meant that a human being was no longer able to “engage in commerce with the surrounding world,” which is “what an organism ‘does’ and what distinguishes every organism from nonliving things.”

In a personal note appended to the end of the report, the chairman of the council, Edmund Pellegrino, expressed regret regarding the lack of empirical precision. He wrote that attempts to articulate the boundaries of death “end in some form of circular reasoning—defining death in terms of life and life in terms of death without a true ‘definition’ of one or the other.”

Others working in bioethics are also interviewed for the article. Bioethicist Robert Truog (Harvard) comments on the racial aspect to the story:

African-Americans are twice as likely as whites to ask that their lives be prolonged as much as possible, even in cases of irreversible coma—a preference that likely stems from fears of neglect. A large body of research has shown that black patients are less likely to get appropriate medications and surgeries than white ones are, regardless of their insurance or education level, and more likely to receive undesirable medical interventions, like amputations. Truog said, “When a doctor is saying your loved one is dead, and your loved one doesn’t look dead, I understand that it might feel that, once again, you are not getting the right care because of the color of your skin.”

Thaddeus Pope (Hamline) has concerns about controversies over the definition of death:

Pope told me that “every extra hour of nursing time that goes into one of these dead patients is an hour of nursing time that didn’t go to somebody else.” He also worries that these disputes, which often get media attention, will cause fewer people to register as organ donors, a practice whose social acceptability depends on the idea that patients are dead before their vital organs are removed. 

I thought Aviv’s article was worth drawing attention to because it discusses how philosophers and bioethicists have engaged in work that has had identifiable “real-world” effects—serious, life and death effects. It also lays bare some of the ways in which philosophical work is limited, or perhaps even compromised, by pressures of time, politics, and the need for an answer. In turn, this raises questions about how we should understand the role of philosophy in such contexts.

(Thanks to Benjamin Mitchell-Yellin for bringing this article to my attention.)

Thinker Analytix: innovative tools for teaching clear and courageous thinking
Notify of

Newest Most Voted
Inline Feedbacks
View all comments
Sam Duncan
Sam Duncan
6 years ago

Thanks to you and Mitchell-Yellin for drawing attention to this. This is a very well done story. Not only does it raise a good many philosophical issues but it does a good job presenting the concepts and the history here. I’m teaching “Bio-Medical Ethics” at the moment I think that I’m actually going to have the students read this rather than the more traditional articles I’d initially assigned on the concept of death.
I should add that that New Yorker has done a bang up job recently when it comes to presenting philosophical ideas and their implications in their news articles. Alice Gregory’s article on accidental killers is a great resource on moral luck (https://www.newyorker.com/magazine/2017/09/18/the-sorrow-and-the-shame-of-the-accidental-killer)
And the piece Joshua Rothman wrote on Benatar is also quite good.
And of course MacFarquhar’s New Yorker articles on extreme altruism, which later became her book “Strangers Drowning,” are excellent.
I do wonder though, does anyone keep track of articles like these, which present philosophical ideas in a fairly popular but not dumbed down way? If not someone really should start a list. I’ve found things like this as well as popular articles like the ones in The Stone and Elizabeth Anderson’s recent piece in Vox work very well with my own students. Often much better than the pieces that get anthologized in the ethics and applied ethics collections.

Alan White
Alan White
6 years ago

This is an excellent post on many different levels, and thanks to Justin and Benjamin.

One very practical consequence of this article should be to draw attention to one effective way that people can advocate for a particular view of death in one’s own case: a detailed and substantive advance directive. While these still must deal with particular states’ laws, they are still the most effective way to place one’s values and wishes about death into possible legal enforcement. When I’ve taught bioethics I’ve emphasized the importance of this process for expressing one’s values about death and dying, and have students review the differences between very basic living wills and substantive directives like the “Five Wishes”.

Robert Veatch, who subscribes to a higher-brain death criterion in his own case–“I don’t wish to be confused with my gag reflex”, has long advocated for the legal recognition of individuals to choose pre-mortem in advance directive fashion from among a legal menu of death criteria that should be applied to them. At the same time Veatch also recognizes that social concerns should not be excluded from decisions about (e.g.) long-term consequences of comatose patients. Perhaps practical time-limits for the application of conservative death criteria, modeled on statutes of limitation, might be a compromise.

6 years ago

“He said, “I think that the people who have done the deep and conceptual thinking about brain death are people with high I.Q.s, who tremendously value their cognitive abilities—people who believe that the ability to think, to plan, and to act in the world are what make for meaningful lives.”

I’d just like to point out that this bias really tends to narrow the way philosophers approach not just the focus here – the death/life boundary – but also cognitive difference and disability. This is especially the case when it comes to issues of moral status and evaluating the quality of life of those taken to be impaired or lacking whatever are construed as the central cognitive capacities (for reasons other than being rendered comatose or ‘brain dead’).

Reply to  ABCDEFGodthåb
6 years ago

Agree that this concerns about intellect are given undue moral weight by many moral theories. But many forms of utilitarianism focus first and foremost on sentience.

Reply to  ABCDEFGodthåb
6 years ago

I think the definitions that include irreversible brain death do not suffer from the claim of being bias toward those with high cognitive abilities. They take into account all brain functions and that all are lost, be they intellectually of a high level or minimal awareness and function (all of which are irrevfersibly lost). Brain death does not just refer to intellectually high functioning, but all meaningful functioning, including just being aware of one’s surroundings.

Having taught medical ethics for 35 years and being a member of a major hospital ethics committee in a predominantly African-American community, I am quite aware of the cultural differences and that, indeed, African-American families will request much more care and longer care than other ethnic groups. Nothing in how we define death, however, forces families to abide by definitions and actions they disagree with. The only issue would be if outsiders such as doctors and ethicists browbeat or coerce families into accept their ideas (if they differ); this is wrong. But doing a compassionate and careful consult to present the facts is part of the job of ethicists, and all health care professionals.

Sam Duncan
Sam Duncan
6 years ago

I actually did end up assigning this article to my students so I’ve been thinking quite a lot about it, and honestly it’s more than a bit distressing. Informed consent and patient autonomy are perhaps the cornerstone principles of the discipline of bioethics, but it seems that many people pushed the brain death account of death and stayed mum on its flaws for more or less consequentialist reasons rather than being open with people about their reasoning. The official narrative I’d heard is that brain death made a lot of philosophical sense merely as a descriptive concept when it was formulated, that later debate had shown that it didn’t really track any value free reality in a neat way, and so now philosophers had retreated to defending as a pragmatic compromise between the competing ends of getting organs for transplant and not wasting resources on the one hand and caution about letting people who should live die and honoring patient and family autonomy in making decisions on the other (for what it’s worth I think it’s a good compromise). It’s disheartening to hear that many of its proponents always knew the problems with the definition as a neat factual description of a very messy reality but sold it as such a factual description to avoid arguments about the value judgments at work. The condescending and even insulting treatment of the Winkfield family by some prominent names in the field is also disturbing.