Inside the Heated Scientific Debate to Redefine Who Is Dead

Inside the Heated Scientific Debate to Redefine Who Is Dead

It was March 10, 2022–day one of a virtual forum held over Zoom to re-write the Uniform Determination of Death Act (UDDA), a draft law that for four decades has been the basis for defining who is alive and who is dead in the United States. Many of those assembled were legal professionals who are members of the Uniform Law Commission (ULC), a quasi-governmental entity whose origins go back 125 years. It’s a crowded meeting of five- dozen guests from both the legal and medical realms. Everyone was keen to offer their perspective on an issue which at first glance might seem quite straightforward. But once one digs deeper into the medical and legal nuances of trying to define death, one realizes that there are many more.

The ULC provides a forum that allows for such debate. Pandemonium can arise for laws that left up to states, each different state chooses to abide by its own wildly different set of rules.. The ULC creates uniform laws that each state and the U.S. would benefit from. These bills are presented to the legislatures for adoption. This usually means dealing with mundane matters like trucking regulations or child custody.

That day, however, the ULC took on something much more serious. Unfortunately, even matters of life and death are prone to Zoom hiccups. Dr. Malcolm Shaner, a neurologist at University of California Los Angeles, was running into some difficulties while trying to address the group.

“You appear to be muted,” Arizona Court of Appeals judge Samuel Thumma, the chair of the meeting, said with a touch of wry amusement creeping into his voice. His stately image was reinforced by the wall of thick legal books at his back. “Oh, there we go.”

“The country needed clear, consistent criteria–lest the courts be flooded with lawsuits from anguished family members whose loved ones lay in a legal gray zone between heaven and Earth.”

Shaner, wearing a suit and tie that’s completely at odds with the tropical rainforest Zoom background behind him, launched into a monologue about brain stems, reflexes, and their connection to consciousness. Despite the thick medical jargon, many in the digital windows nodded along.

Thumma kept the conversation moving by calling out individual speakers via digital emoticons. In the chat, heated yet respectful debates spilled over each other.

Dr. Doyen Nguyen, a professor of moral theology and bioethics at Atlanta’s Pontifex University, who is also a physician specializing in diagnostic hematology (the study of blood and its disorders), duked it out with Thaddeus Pope, an expert on medical law and clinical ethics at Mitchell Hamline School of Law in Saint Paul, Minnesota. Pope co-authored a January, 2020 journal article in Annals of Internal Medicine that first proposed remaking the UDDA.

“Thad wrote that we are dealing with humans in the chat. “This is not the place nor the time to impose uniformity for uniformity sake.”

“Doyen: Really? This is the UNIFORM law commission, discussing the UNIFORM determination of death act,” Pope replied.

Vocabulary is important when drafting legislation. Opposing viewpoints were passionately aired over seemingly minute details. There were two perspectives within this group: one believes that death can be described as irreversible and another believes it is permanent.

This distinction is important, though subtle. The latter definition is controversial because it is difficult to define death as permanent. Death is not irreversible if medical intervention isn’t taken.

A North Dakota doctor by the name of Christopher DeCock, who opted for the bridge of the original Starship Enterprise as his background, used another fantasy tale to make his fandom of Team Irreversible known.

“This isn’t ‘Princess Bride,’ where you’re mostly dead,” he says, paraphrasing Billy Crystal’s comedic relief healer Miracle Max from the 1987 classic. “Either you’re dead or you’re not dead.”

The debate over when death begins goes back more than half a century century. Prior to that, death was rather straightforward: Life ended when the heart and lungs ceased to function. But in 1959, two French physicians, Pierre Mollaret and Maurice Goulon, documented for the first time a phenomenon they observed in two dozen patients who were connected to ventilators.

These patients were unable to breathe by themselves or respond to stimuli. Nor did they show any other signs of life typical of previous patients who lacked consciousness–they did not sleep, for instance. They had no evidence of electrical activity in their brains, which ruled out the possibility of having any form of consciousness. This went further.

Mollaret and Goulon coined a new term for this condition: coma depasse, or beyond a coma. Although the bodies survived, patients died.

A few years later, in 1963, a Belgian surgeon named Guy Alexander harvested organs from the body of a patient whose condition was the same as those observed by the French doctors. Since the patient’s organs were still being fed oxygen, they would be in better shape when they were transplanted into living patients. It was clear that the donor’s brain was not functioning properly and the donor had coma passe ,, so the problem was solved. Around the world, great numbers of organ transplants followed, including, in 1967, the first successful transfer of a human heart from one body to another.

But there was a problem. Death was defined at that time as the loss or absence of a pulse. All of these organ donors survived the legal and medical requirements.

In 1968, faced with this brave new world of organ transplantation, a small team convened at Harvard University to sort out a modern legal definition of death. Together, the group tried to answer two questions: When has a human brain irreversibly ceased to function? Is it possible for a brain to cease to function permanently but still the heart pumps, or is this a sign that the person has died?

Or, read another way: What is a life?

The landmark Harvard paper laid out some basic criteria for determining when a brain is non-operative. But the authors concluded that this state of “irreversible coma” did not need a legal definition. They stated that courts could simply accept expert medical opinions whenever lawsuits were brought up. In other words, these new problems in medical ethics would have to be judged case by case.

Alex Capron is a legal scholar who is an expert on health policy and medical ethic at the University of Southern California. He was one of the first to highlight the problems with this method. In 1970, Kansas became the first state to enact a clumsily-written law recognizing that a still-functioning body could belong to a person who was now legally dead. Others followed suit with their individual laws. Capron claimed that death in America could be a confusing legal and moral mess without a common standard. Different criteria are used in each state. That means someone could be alive in New York and dead in New Mexico. To avoid confusion and lawsuits by grieving family members, whose loved ones were in legal grey areas between Heaven and Earth, the country required clear criteria.

” For every story that grabs attention, there are many more that take place in hospital rooms where the grieving family is told by doctors that their mother, father or daughter, who are still rising and falling from their chests, are not really alive. “

In 1980, Capron was appointed to head up a presidential commission to examine the issue. In Chicago, representatives from the American Medical Association, American Academy of Neurology and American Bar Association met and concluded that there were two options to define death. One is when the heart or lungs stop working and one is when the brain stops working.

With this information, ULC commissioners met on Kuaui in Hawaii the following year to draft a model law governing the death process–the UDDA. It was a fitting locale: local legend holds that the island’s Waimea Canyon is home to the souls of the recently dead.

The core of the UDDA consists of just a single paragraph, which defines a dead person as:

An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem… A determination of death must be made in accordance with accepted medical standards.

— The Uniform Determination of Death Act

Those 42 words were the product of almost a decade of work from both doctors and lawyers. The law was quickly adopted by 36 states. Rest of the states made minor changes. Essentially, the commissioners had formalized brain death, as it became colloquially known. The line that separates life from death was no longer a straight line. It had been distorted over the decades.

In the Zoom call’s chat, Robert Truog, the director of Harvard’s Center for Bioethics and a practicing clinician in pediatric intensive care, had a bone to pick: He wanted to know if the others believed that “whole brain death”–where both the brain stem and the cerebrum are no longer functioning–equated to biological death.

He pointed to the case of a four-year-old boy who was kept on life support for 20 years. Over the years, he underwent a stunted form of puberty, despite a subsequent autopsy showing his brain had long since calcified. To Truog, this was not a curious but isolated item from the medical archives. Rather, it’s the case that best makes a point he has spent a career hammering home: Human beings do not need a brain to live.

Truog is a Brown University philosophy graduate who has spent much time pondering the meaning of being alive. While he was working on his internship at the University of Colorado in the early 1980s, the UDDA was unveiled to the world. He was perturbed by what he saw as contradictions in the act’s definition of death.

“It did strike me that there was something odd,” he told The Daily Beast. We can then use science to figure out how we can address that. And then we use science to think about how to address that.”

But, Truog said, the question of when someone has died is more a metaphysical one than it is a scientific one.

“The question of death is a hugely multifaceted issue that really strikes to the core of the human condition,” he said. “And to think that we could simplify our understanding of death into an algorithm of medical tests struck me, I think, immediately as, ‘There’s something fishy going on here.'”

As his career progressed, Truog became an outspoken critic of brain death as both a medical and legal concept. In 2012, he co-authored a book called Death, Dying and Organ Transplantation: Reconstructing Medical Ethics at the End of Life laying out a case for doing away with it and suggesting a new paradigm for ethical organ harvesting.

In the book, Truog argues that, had it not been for the advent of vital organ transplantation, brain death as a concept likely would never have been invented. In his view, the idea of brain death was just a convenient way for doctors to avoid contravening their Hippocratic oath, “First, do no harm.”

Transplant surgeons abide by what is known as the dead donor rule: They cannot remove vital organs such as hearts and lungs unless the donor is dead. (Non-vital organs, like kidneys, may be removed if the donor is alive, so long as the donor gives proper consent). It would be considered murder to remove vital organs of a patient who is still alive.

The problem, as Truog saw it, was that brain-dead patients didn’t meet the criteria for being dead. Their brains were damaged, but they could still be considered to be alive. Yes, those patients were alive only because of the machines they were hooked up to–but so were kidney patients on dialysis.

And how can the brain die if it is still working? The four-year-old boy had gone through puberty. In other cases, fetuses can be born to brain-dead mothers. These two processes are dependent on hormones. In the brain, you will find the pituitary and hippocampus which are the hormonal regulatory centers of the body.

“I am a big fan of Bob Truog. I think he’s a thought leader,” Sam Shemie, a pediatric critical care doctor at the Montreal Children’s Hospital who has written extensively on brain death, told The Daily Beast. But, “the arguments that are put forward against brain death are quite repetitive and tiring.”

He adds, “When we’re talking about death, we’re no longer talking about death of all the cells of the body, all the organs of the body, we’re talking about a medical-legal definition of death that is based on the presence or complete absence of brain function… The medical and legal definition of death that allows hospitals to work is an understanding of when things can be reversed, and when they cannot. That needs to be scientifically based.”

The gray zone surrounding brain death was perhaps most publicly debated in the case of Jahi McMath, a California teenager whose family fought against a brain death determination after she developed a severe bleed while undergoing surgery for tonsillitis 2013. The family’s efforts to keep their daughter on a ventilator went so far that they ended up moving to New Jersey, the only state where religious objections can be a reason to keep a person deemed brain dead on life support indefinitely.

These cases are not just for a select group of doctors. At least one of the Zoom call’s participants had called for a moratorium on harvesting organs from the brain dead, arguing that it’s impossible to be truly certain that brain function has been lost forever. Instead of revealing the uncertainty to their families, doctors should seek consent to organ donation.

Pope pointed out that while some cases become well-known, others are still obscure. The number of lawsuits involving the UDDA or its variations is hard to estimate. This is to not mention the pain and suffering that unclear rules regarding brain death can cause. For every headline-grabbing tale, there are many others that play out quietly in hospital ICUs and hallways where grieving kin are told that a mother or father, daughter or son, lying just feet away with their chest still rising and falling, is not actually alive. Family members must be able to reconcile the reality that their eyes see with what medical and legal authorities have determined.

How that is done remains unclear. Under the current wording of the UDDA, brain death must be determined by the “best practices” of the medical community–wording so vague that there can be different requirements for calling someone dead not just between states, but between different hospitals, sometimes in the same city.

“We’re literally legislating what states of life are worth protecting, which is very, very similar to the abortion debate.”

— Thaddeus Pope, Mitchell Hamline School of Law

The issue isn’t isolated to the U.S.. In 2020, physicians from more than 15 countries joined to co-author an article in the Journal of the American Medical Association. They called themselves the “World Brain Death Project” and pointed out that there was no universal method to determine who is dead. Only around 40 percent of countries had a protocol to determine brain death. Almost all of them were different, and there were huge discrepancies between the procedures. Some countries didn’t require checking body temperature. Others didn’t need doctors to ensure that patients weren’t taking drugs that might cause brain death. The clinical tests themselves were scattershot–around 10 percent didn’t require an apnea test, in which a ventilator is shut off to see if rising carbon dioxide levels in the blood kickstart autonomous breathing, before declaring someone brain dead.

Physicians and lawmakers around the world couldn’t even agree on what brain death is. In the U.S., the definition requires the entire brain to lose function while other countries define brain death as failure of the brain stem only.

This hyper-nationalized, fractured conception of death can only cause confusion, according to The World Brain Death Project. One patient can be considered dead in the United Kingdom, while one could be considered to still be alive in the United States.

Dozens of medical professionals from all over the globe, including the World Federation of Neurology, supported the initiative.

Even though experts were discussing the requirements of the new law, others on the Zoom conference call worried about the future after the consensus is reached. The new law’s wording isn’t expected to be agreed on before 2023. After that, it will have to go to 50 state legislatures (as well as the bodies governing areas like Puerto Rico and Washington D.C.) for approval. Although many states passed the original UDDA with little fanfare in the years following 1981, politics since then has gotten much uglier.

“It seems absolutely obvious to me that in South Dakota, Oklahoma, Ohio, a number of states, this is going to be a big problem,” Pope said at the meeting. We’re literally legislating what states of life are worth protecting, which is very, very similar to the abortion debate.”

On June 24, the Supreme Court reversed Roe v. Wade, the pivotal ruling that for almost half a century ensured abortion as a constitutional right. As millions of people expressed their anguish, several states immediately moved to outlaw the procedure, with several others likely to take action to severely restrict, or even ban, abortions in the near future.

There is a worrying precedent.

In 1981, shortly after the wording of the original UDDA was approved, Capron appeared on ABC’s Nightline. Host Ted Koppel interviewed Capron, and then pivoted to an opposing view from a physician named Mildred F. Jefferson, the first Black woman to ever graduate from Harvard Medical School. Jefferson was one of the most ardent anti-abortion advocates in the country. She is perhaps most well-known for persuading Ronald Reagan to support life.

As this segment ended, b-roll footage was played from the Western Massachusetts Hospital. Patients who were motionless and prone were attended by nurses.

In voiceover, a reporter declared that 25 patients in the hospital “have no brain waves and, by Massachusetts state law, they are legally dead. But even they continue to breathe on their own, without the use of machines.”

Today, 41 years later, Capron is still incensed at the error.

“People who remain in vegetative state aren’t going to die aren’t they?” he stated. Those people may have suffered serious injuries, but since they breathed without the help of machines, they were not brain dead. The public is often confused about brain death and persistent vegetative state. Capron is concerned that the public could use this mixup to promote a story. In today’s more partisan environment, death may once again be a victim to political culture wars.

He pointed to the case of McMath.

“Once that became an issue, she was, of course, embraced by the Right to Life Community,” he told The Daily Beast. “And they were saying basically the same thing that this woman had said on Nightline, which is that you are taking people who are not dead, and for the wrong reasons, calling them dead so that you can take their organs or whatever.”

Perhaps the clearest case of the political fighting that can break out over end-of-life issues came during the years-long saga of Terri Schivao, the Florida woman who suffered massive brain trauma resulting in the diagnosis of a persistent vegetative state in 1990. When Schiavo’s husband decided to remove her feeding tube, saying his wife wouldn’t have wanted to continue living in her condition, her parents sued to have it kept in. After a judge ordered that the tube be taken out, the situation escalated and Congress and the then-President George W. Bush intervened.

Though Schivao was able to breathe on her own, and therefore wasn’t brain dead, the argument over who gets to determine what level of life is worth preserving became a media and political firestorm that dominated cable news for weeks.

Truog made an inextricable peace with the idea of brain death over the last decade. He’s spent too much time in an ICU, declared too many patients brain dead, overseen too many organ procurements, spoken to too many colleagues to believe his views will ever become mainstream.

Instead of seeing death as a biological state, he now sees it as a social construct. He still believes that doctors are engaging in a form of justified homicide if they remove organs from a brain dead patient, even with full consent. But he acknowledges that convincing his peers and the general public of his stance “will never fly.”

“It is not unreasonable,” he said, “to say that when a person will never wake up again, will never breathe on their own again… that means they can be treated as dead, and for legal purposes could be considered dead.”

The post Inside the Heated Scientific Debate to Redefine Who Is Dead appeared first on The Daily Beast.