'Brain Death' at a crossroads

A proposal to revise the definition of 'brain death' could have far-reaching consequences.

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Credit: Unsplash.

Remember the story of Jahi McMath? 

After routine surgery for sleep apnea the summer of 2014, Jahi McMath’s medical team overlooked a bleed that eventually led to cardiac arrest and a catastrophic brain injury. Her medical team declared her “brain dead” and the state of California issued a formal death certificate. 

But something unexpected happened: Jahi reached puberty and got her first period. 

Her family, already irate at the poor care she was given and quite aware of the history of Black families like theirs receiving substandard care (especially when in vulnerable situations), refused to accept the medical team’s view that she had died. In addition to reaching puberty, Jahi fought off infections, maintained homeostasis, responded with an elevated heart rate to trauma, and more. 

But as her family fought for her life, the medical establishment entrusted with her care had quite a different reaction. 

David Durand, senior vice-president and chief medical officer of the hospital where Jahi was admitted, dismissed her family’s concerns. According to Jahi’s mother, stepfather, grandmother, brother, and their lawyer, Dr. Durand responded to their concerns by saying, “What is it that you don’t understand?” 

He then pounded his fist on the table, saying, “She’s dead, dead, dead.”

That judgment would not stand the test of time.

In 2021, an article in the Journal of Neurological Sciences would declare that Jahi was not brain dead after all, but had something called “responsive unawake syndrome.” 

The facts seemed to support that idea. In 2014, after Jahi had been issued a California death certificate, her family moved her to a New Jersey hospital, where a Catholic hospital had agreed to treat her. Jahi lived for four more years, and even convinced people who had once agreed that she was dead that she could respond to her mother’s command to touch her thumb and forefinger together.

How did the American medical community get to a place of dissonance — where one of the most respected physicians in the country could be so confident about the fact a patient had died — and yet be so dramatically contradicted by other experts in the field just a few years later? 

It turns out that the confusion in Jahi McMath’s story mirrors a more general kind of confusion in the country at large about some very basic questions: What does it mean to be alive? What does it mean to be dead? 

Most complex, perhaps: What does it mean to be  brain dead?

Those issues have been debated for decades among medical ethicists. And next week , they’ll hit an inflection point when an influential organization of lawyers — a group called the Uniform Law Commission  — will use their annual Hawaii meeting to vote on whether to recommend that U.S. states change the legal definition of death. 

Profound confusion

Melissa Moschella, associate professor of philosophy at the Catholic University of America, told The Pillar that debate over brain death is a complex topic — and made more difficult by a broad use of the term “brain dead” in media and public conversation, even applied to people who are in a coma.

“And since people sometimes come out of comas unexpectedly, this leads many people to be skeptical of the claim that brain death is really death,” she said.

But even when everyone agrees that someone can be declared “brain dead,” the concept itself can be confusing. 

The confusion is summed up in a headline from a 2006 Associated Press report about a pregnant woman who successfully gave birth to a child several weeks after becoming brain dead: “Brain Dead Woman Gives Birth, Then Dies.”

But as Jahi’s case made clear, the confusion isn’t limited to popular discourse. 

Experts and ethicists in the medical field are deeply divided over brain death, and confusion is so embedded in clinical culture that many clinicians say it isn’t even noticeable.

Alan Shewmon, retired chief of neurology at UCLA and a prominent voice in the brain death debate, told The Pillar that most clinicians “aren’t even aware that there is a raging discourse over ‘brain death.’” 

“They simply accept what they were taught in medical school and residency: that ‘brain death’ is death, and that it’s diagnosed according to the published guidelines of the American Academy of Neurology for adults and the joint-society guidelines for children; you check off all the boxes and move on to the next patient without thinking further about it,” Shewmon added. 

Shewmon is well-aware that the issue is increasingly debated in philosophical, theological, and bioethical circles, and that the non-profit Uniform Law Commission is trying to address the profound and growing confusion by helping states to revise the statutory definition of death. 

But, he claimed: “If you ask those same clinicians why ’brain death’ is death, you will find no consensus, and often not even a coherent response.” 

Ostensibly, brain death is death because it both marks and reveals the death of a human organism.

But Shewmon estimated that about half of neurologists and intensivists implicitly or explicitly hold a different view: that a brain dead human being is no longer a person because they have lost the capacity for consciousness.  

Confusion over the subject has far-reaching consequences for doctors —some of them philosophical, but many quite practical. 

Thaddeus Pope is a professor at Mitchell Hamline School of Law in St. Paul, MN, and an influential member of a committee currently developing revised definitions of death for the Uniform Law Commission. 

Pope told The Pillar that confusion over brain death had led to mistrust of the medical community — that patients and their families often decide not to register as organ donors because they’re afraid they’ll be declared dead prematurely, so that their organs can be removed.  

Increasingly, said Pope, when a family is told that a loved one is “brain dead,” they’re skeptical that a medical diagnosis of “brain death” is the same as being really dead.  

How did we get here? 

If you ask some people about the debate over the medical definition of death, they’ll tell you that the working definition of brain death in the U.S. is meant to optimize the number of organs available for transplant. To others that sounds like paranoia. But while not everyone agrees, there are historical facts to support the idea that definitions of brain death have something to do with access to organs. 

The 1960s and 70s brought with them a new way to think about two new technologies working together: first, the ventilator saving the lives of people with catastrophic brain injuries and, second, the regular and successful transplantation of vital organs from one body into another. 

As organ donation became safe and widely taught, the need for donor organs far outstripped supply. In response, major figures in bioethics—like Harvard Medical School’s Henry Beecher—were clear about the fact that they wanted to revisit the definition of death in order to procure more organs to help meet this demand.

If the definition of death were not changed, said Beecher, “the curable, the salvageable” would be sacrificed in favor of “the hopelessly damaged and unconscious who consume the time and space and money better devoted to those who could be helped.”

Beecher would eventually get his wish, leading a specially formed Committee of the Harvard Medical School to Examine the Definition of Brain Death to a 1968 report which offered a definition of death which included the notion of an “irreversible coma,” for the following two reasons:

1. Improvements in resuscitative and supportive measures have led to increased efforts to save those who are desperately injured. Sometimes these efforts have only a partial success so that the result is an individual whose heart continues to beat but whose brain is irreversibly damaged. The burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals, and on those in need of hospital beds already occupied by these comatose patients. 

2. Obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.

That rationale might seen awkward, but it was developed for a purpose — to response to criticism of the committee’s first draft, which the dean of Harvard Medical School’s had said “it suggests that you wish to define death in order to make viable organs more readily available to persons requiring transplants.”

But despite the way it came into being, the Harvard committee’s conclusion would become wildly influential in academic and clinical circles.

And then, mostly because the Uniform Law Commission created the Uniform Definition of Death Act in 1980, the new “Harvard definition” of death would become the binding law in all 50 states. 

Today, someone is considered dead if they suffer “irreversible cessation of all functions of the entire brain, including the brain stem,” just as the Harvard committee had proposed.

But how connected is today’s definition of death to what motivated the original Harvard Committee which started this process? 

It depends on who you ask. 

Some ethicists argue that the procurement of organs remains a motivation in some circles. In 2018, esteemed Harvard bioethicist Robert Truog told a reporter that he faced direct pushback from a transplant physician after one of his lectures: “You should be ashamed of yourself. What you are doing is immoral: to put doubts in the minds of people about a practice that is saving countless lives.”

‘Brain death’ criteria goes too far? Or not far enough?

While a group of thinkers have pushed back on the prevailing Harvard brain death standard because they think it goes too far, there is another group pushing from another direction.

They're the ones who think the "irreversible coma" standard doesn't go far enough. 

They want doctors to have more autonomy to make judgments in the exam room, or at the operating table, about who is alive and who isn't. And they want the law to reflect their judgment about what death means.

Consider this unsigned 2009 editorial in Nature:

In practice, unfortunately, physicians know that when they declare that someone on life support is dead, they are usually obeying the spirit, but not the letter, of the law...In particular, they struggle with three of the law’s phrases: ‘irreversible,’ ‘all functions,’ and ‘entire brain,’ knowing that they cannot guarantee full compliance...what if, as is sometimes the case, blood chemistry suggests that the pituitary gland at the base of the brain is still functioning?...

Ideally, the law should be changed to describe more accurately and honestly the way that death is determined in clinical practice. Most doctors have hesitated to say so too loudly, lest they be caricatured in public as greedy harvesters eager to strip living patients of their organs…Few things are as sensitive as death. But concerns about the legal details of declaring death in someone who will never again be the person he or she was should be weighed against the value of giving a full and healthy life to someone who will die without a transplant.

The Nature editorial argued that, for years, some physicians and medical teams have simply ignored the law, and replaced it with their own point of view about what kinds of lives are worth living, saving, or counting as a co-equal member of the moral and legal community.  

Speaking to The Pillar, Thaddeus Pope said the medical community has “never” systematically tested to make sure that the whole brain is dead. The hypothalamus, for instance, is a deeply-embedded part of the brain that, among other things, triggers puberty. Given that has it likely still been functioning in many so-called “brain death” cases, at least some neuroendocrine functionality has been present in thousands and thousands of people who have been called dead. 

So, Pope said, lawmakers should either change the law to match what doctors are actually doing or doctors should change what they are doing to match the law. The current situation is untenable, he said. 

Pope is a firm believer in changing the law to match current practices. And for two reasons. 

First, he said that no test will be able to perfectly determine that the whole brain has died and the tests we currently use to  determine it are relatively arbitrary. 

Second, Pope explained that in his view personhood is what matters and not the biological functioning of an organism. From his perspective, even if some parts of a human brain are functioning, if people no longer have consciousness, they can’t really be regarded as persons. 

In a way, thinkers like Truog and Shewmon agree with Pope and the author of the Nature editorial: 

They agree that the way brain death is being tested for today means that doctors do not actually know that the death of the human organism has occurred before his or her vital organs are removed. 

They agree about the numerous examples of human beings who live with “chronic” brain death for years, sometimes decades. 

But they reject the distinction between a living human being and a living human person. They also reject the idea that a definition of death should be accepted based on how likely it is to produce life-saving organs for transplant.

But they go further. They want to scrap the very notion that even whole brain death, properly understood and diagnosed, necessarily results in the death of the human being.

Shewmon told The Pillar that he utterly rejects the idea that the brain is anything like “the central integrator of the body,” and noted that in neuroanatonmy or neurophysiology textbooks, “you won’t find any set of nerves or tracts whose function is to maintain homeostasis and prevent bodily decay.” 

Patients who have some kind of brain-body disconnection “are very sick and dependent, but they are not dead. Despite the lack of brain control, their bodies do not decompose like corpses,” Shewmom argued.

Indeed, he said that during the years (and even decades) that such patients can live, they don’t need much care at all and can even live at home. 

They need “little more than a mechanical ventilator, tube feedings, a handful of medications, and good nursing care…[and their] bodies are much more integrated and ‘healthy’ than many terminal, comatose patients in ICUs, who are spiraling downhill despite all possible medical interventions, yet are recognized by everyone as nevertheless still alive,” he said.

Then why such a focus on the brain? 

Joe Vukov, a philosopher at Loyola University Chicago whose research is at the intersection of ethics, neuroscience, and philosophy of mind, told The Pillar that a medical focus on the brain “comes from a reductive view of the human person.” 

That view that says, “you are your brain” and is “coupled with an understanding of the human person as grounded in intelligent cognitive function” which is dependent, at least in large part, on the brain.

Vukov said that view can have dangerous consequences.

“It is dangerous,” says Vukov, “to overemphasize the brain in our understanding of human personhood. It flirts with reductive and overly cognitive views of what it means to be a human person in the first place.”

The Catholic debate

One in seven hospital beds in the U.S. is in a Catholic hospital. So the intra-Catholic debate about brain death has an outsize impact on health care. But the debate is its own thing — existing alongside the mainstream debate.

Indeed, Shewmon–who is himself Catholic–underlines the point that Catholic defenders of the brain death standard are quite peculiar when compared with other defenders. 

Unlike nearly every non-Catholic who claims to accept that brain death is really death, Catholic defenders argue that the death of the brain actually results in the death of the human organism. This is because they believe the brain is the master integrator of a living human body: if the whole brain has died then the human being—the human organism as a whole—has also necessarily died. 

Some version of brain death has been accepted by the Church in various ways and with various qualifications for decades now. Pius XII, John Paul II, and Benedict XVI have seemed to accept some version of it. 

In 2000, Pope St. John Paul II told doctors that: “Here it can be said that the criterion adopted in more recent times for ascertaining the fact of death, namely, the complete andirreversible cessation of all brain activity, if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology.”

Joe Zalot, a staff ethicist at the National Catholic Bioethics Center told The Pillar that the center’s position—one which is consistent with what John Paul II laid out in that address—is that “if one can determine whole brain death with moral certitude” then it is permissible to procure vital organs and tissue for transplant.

Groups like the NCBC and Catholic Medical Association are strong supporters of clear and well-supported Catholic teaching on matters like this in bioethics. That is why, for those who thought the matter was settled for non-dissenting Catholics, it might have been surprising to see that the Catholic Medical Association hosted a formal debate on brain death just two years ago.

That debate revealed that there is more for Catholic theologians and philosophers  — in close consultation with clinicians — to dive into on the subject, particularly as knowledge grows about the brain and the human body.

“Overall, I think the debate is a healthy one,” said Zalot. “I think many of us have assumed, at least I did, that the medical criteria for determining brain death—most notably that of the American Academy of Neurology—were sufficient for determining with moral certitude that a potential organ donor was, in fact, dead.” 

“However, medical professionals and others are increasingly asking questions about the criteria used, particularly with regard to the hypothalamus. Now I think we have to be careful and have a critical eye on the information we are presented, but I think this is a conversation we as a society need to have.”

Dr. Christopher DeCock, a pediatric neurologist and member of the Catholic Medical Association, told The Pillar that the ongoing Catholic debate is “not surprising.” 

Emphasizing that Pope Pius XII, John Paul II and Benedict XVI all discussed and emphasized having moral certitude, DeCock notes that “it is clear to most in this debate that we do not have moral certitude where brain death is concerned.” 

Despite this view toward open debate in Catholic circles, DeCock argues that the cases Shewmon brings up invoking so-called “chronic brain death” do less to invalidate the concept of brain death as death and more to show that the current clinical criteria do not test for whole brain death.

He is joined in that view by the eminent physician-philosopher (and former Franciscan friar) Dan Sulmasy, perhaps the most important figure in Catholic bioethics and one of the most important figures in all of bioethics, period. 

The Georgetown professor told The Pillar that careful examination of the chronic brain death cases “suggests that nests of brain cells must be functioning and producing hormones and performing other functions like temperature regulation.” 

Furthermore, says Sulmasy, in order to be alive “an individual must be substantially self-integrating” and when “the locus of integration has become the intensive care doctor and not the patient herself, with the medical team supplying breathing and oxygen, temperature control, heart rate and blood pressure control, nutrition, hydration, sodium balance, hormones controlling growth, metabolism, and sexual development and function, all of which are controlled by the normal brain, then the individual has ceased to exist as a self-integrating whole. Such patients, in my view, can be determined to be deceased.”

Sulmasy and DeCock are joined by Professor Moshella who, while acknowledging the worry “that brain-based criteria for death reflect a false dualistic anthropology that fails to recognize that the person is a unity of body and soul,” nevertheless points out that the death of a human being occurs well before all of the organism's parts cease vital activity and begin to decompose. “Many complex biological functions can persist even up to several days after death,” she said. 

“And with artificial support, cells, organs and organ networks can be maintained and continue to function outside the body for long periods of time, sometimes indefinitely.” The fact some bodies can continue to perform some complex vital functions with external support is therefore not necessarily evidence that the organism as a whole is still alive.” 

Both Shewman and Truog dispute Catholics who hold this position, arguing that in fact some patients who are chronically brain dead have no evidence of any brain function at all and thus serve as counter-examples.

Perhaps the best-known one was that of “TK”, a patient who survived more than 20 years after being declared brain dead. Another eminent Catholic bioethicist, theologian, and scientist, Nicanor Austriaco, took to the pages of the journal of the Catholic Medical Association to give his evaluation of TK’s autopsy. He found that indeed the whole brain had died, and yet TK remained a living human organism with blood pressure homeostasis, a robust immune response, and proportionate growth. 

The case of TK, argued Austriaco in the journal, is “proof-of-principle that the human organism does not need a brain to maintain its organismal integration.”

This intra-Catholic debate over brain death is not going away any time soon. Disagreements of the kind just described will likely take decades (if not longer) to resolve in Catholic circles—and they will be joined by disagreements about whether the kind of testing necessary to prove whole brain death exists, about whether the fact that the human embryo doesn’t need a brain in order to self-integrate is another proof-of-principle, and whether other organs (like the spinal cord) or systems can take over the brain’s role in integration of the organism in the face of a catastrophic brain injury

But foes in these debates can be—and in fact are—becoming allies when it comes to facing down a common opponent during a particularly urgent moment in our debate over the definition of death in the United States.

‘Hijacked’ - A proposal to change the law in all 50 states

Earlier this year a committee was formed to revisit the Uniform Determination of Death Act in light of all growing confusion about brain death. 

 While the committee did allow for a number of dissenting voices to be heard, it eventually became clear especially to the Catholic members of the committee  that there was a plan afoot—not to get a coherent and defensible sense of when and why someone who has been declared dead is in fact actually dead—but instead to make the deeply problematic clinical practices (like the ones which led to Jahi McMath being declared dead)the new standard. 

The committee as a whole was led to believe that movement on such foundational and controversial issues would be put aside for a year, while members worked on an “opt out” for clinicians with different views on the basis of religion or secular metaphysical vision. 

But in what one committee member described later as getting “bushwhacked”  — another used the term “hijacked” — powerful members the committee insisted instead that Uniform Law Commission be presented with a proposal to radically change the definition of death. 

This was the language on the screen at the close of the final session:

An individual who has sustained either (a) permanent cessation of circulatory and respiratory functions, or; 

(b) permanent coma, permanent cessation of spontaneous respiratory functions, and permanent loss of brainstem reflexes, is dead. A determination of death must be made in accordance with accepted medical standards.

The “entire” and “whole” brain death standard was replaced in that definition by references to “coma”, “apnea”, and “loss of brainstem reflexes.” 

That represents, again, not a coherent  definition of death—but rather an attempt to codify the clinical practices currently being used. There was no reference, for instance, to testing to make sure the  hypothalamus was dead. 

Furthermore, drafters of this language have attempted to change “irreversible” to “permanent” — with “permanent” referring merely to a medical team’s decision not to reverse something, even when in principle or in fact it could be reversed.    

What will happen if the Uniform Law Commission passes that version?

First, patients like TK, Jahi, and others in similar contexts will be declared dead—not by clinicians who are skirting or even directly breaking the law—but by those who would be following the law.

One can imagine a likely scenario in which a patient who is merely comatose, but whose physician or medical team decides not to treat him (perhaps because they’ve decided he “will never again be the person he or she was”), could be declared dead. 

In short, it would be a total revolution in how the culture thinks about death. Perhaps even more dramatic than Harvard’s move to a neurological criterion which set us on this path.  

Second, this move will directly entangle the debate over brain death with the abortion debate. 

Pope told The Pillar that when he and others press the idea that it isn’t human life that matters at the end of life, but rather human life that has certain traits and capabilities, this is “perfectly symmetrical” with debates about moral status at the beginning of life. 

He says there are similar lines being drawn (or not) and for similar reasons. Undoubtedly, if all 50 states accept that obviously living members of the species Homo sapiens nevertheless do not count as moral or legal persons at the end of life, that will have implications for whether living members of the species Homo sapiens count as moral or legal persons at the beginning of life.

Third, if the Uniform Law Commission passes this new UDDA it will ironically lead to significantly less uniformity in the law. Pope thinks that while many states would adopt the new definition, states that are more religious and more anti-abortion (and perhaps disproportionately in the South) would reject this new definition of death. He is joined across the divide by Sulmasy and others who very much agree that this will be the result. In short, the ULC would undermine its own goal of uniformity of the law if they accept the new language.

Fourth, in another ironic twist given the goals of those most dramatically pushing for this change, there are likely to be fewer organ donors overall if this language is passed. Shewmon, for instance, said that such a move “should make people think twice before checking the organ donor box on their driver’s license, because their idea of ‘dead’ would bear little resemblance to their actual condition at the time of organ harvesting.” 

Shewmon is convinced of a “gross lack of informed consent surrounding organ donation, beginning with the propaganda at the Department of Motor Vehicles” but also that a revised definition of death “would only widen the chasm between clinical reality and what is told to potential patients and families.” 

How should Catholics respond?

Many thinkers who spoke to The Pillar, including those who disagree strenuously about whether Catholics should accept the “whole brain death” standard, agreed on the need to work together to resist the possibility that the UDDA might be revised in ways which undermine the fundamental moral and legal equality of all human beings. 

All of them had a sense of urgency, which is not surprising given that the meeting is right around the corner. 

DeCock urged Catholics to contact their ULC commissioners to push back on the proposed changes. and tell them that this kind of change is unacceptable, and to contact state legislators, urging them to resist the passage of laws redefining death in their states. 

Shewmon urged Catholics to “spread the word as fast and as widely as possible, especially to pro-life people who would understand that this revised UDDA would be for the end of life what Roe was for the beginning of life.” 

Sulmasy, who has a fundamental disagreement with Shewmon in other areas, agreed about the level of urgency and called all players to put our disagreements aside and fight any change to the current UDDA. 

And while the issues coming to a head next week are urgent, Zalot offered a helpful perspective. Without downplaying the urgency of the questions and issues under consideration, he recalled that what often gets lost in the froth of debate is that “organ and tissue donation is a gift offered for the good of another.” 

Regardless of where they stand on brain death,  ethicists should “examine the realities at play as well as our motives and goals” and see if they match up with the logic of gift-giving. 

“Organs and tissues in question are not simply ‘objects’ that are taken from one person and implanted into another. Instead, one person is offering a part or multiple parts of him or herself for the good of another,” Zalot said. 

He acknowledged that reflecting on these matters are not likely to resolve differing opinions about brain death protocol, but said a perspective on the gift of organ donation can ground the debate in concrete reality. And that may in turn, he said, help improve the quality of the discussion.