It was March 10, 2022, the first day of a virtual forum held at Zoom to rewrite the Uniform Death Determination Act (UDDA), a bill that for four decades has been the basis for defining who is alive and who is dead. in the United States. Many of those gathered were legal professionals who are members of the Uniform Law Commission (ULC), a quasi-governmental entity whose origins date back 125 years. It is a crowded gathering of five dozen guests from both the legal and medical fields. Everyone wanted to share their own perspective on a topic that may seem pretty dry at first glance, until it really begins to delve into the legal and medical nuances behind trying to define one’s own death.
The ULC is the perfect forum for this type of debate. Pandemonium can arise from laws left in the hands of states, each different state choosing to comply with its own very different set of rules. When each state — and therefore the United States as a whole — benefits from uniformity, the ULC drafts bills that are then presented to each legislature for adoption. This usually means struggling with relatively mundane issues such as child custody or truck transportation regulations.
That day, the ULC assumed something more existential. Unfortunately, even life or death issues are prone to Zoom hiccups. Dr. Malcolm Shaner, a neurologist at the University of California at Los Angeles, encountered some difficulties while trying to address the group.
“You seem to be silenced,” Arizona Court of Appeals Judge Samuel Thumma, the chairman of the meeting, said with a touch of ironic amusement that introduced his voice. His majestic image was reinforced by the wall of thick legal books on his back. “Oh, there we go.”
“The country needed clear and consistent criteria, so that the courts would not be filled with lawsuits from distressed relatives whose loved ones were in a legal gray area between heaven and earth.”
Shaner, in a suit and tie totally at odds with Zoom’s background of the rainforest behind him, threw himself into a monologue about brainstems, reflexes, and their connection to consciousness. Despite the thick medical jargon, many in the digital windows nodded.
Over the course of several hours, Thumma kept things moving, calling out individual speakers as they raised their hands using digital emoji. In the talk, heated but respectful debates spilled over into each other.
Dr. Doyen Nguyen, a professor of moral theology and bioethics at Pontifical University in Atlanta, who is also a physician specializing in diagnostic hematology (the study of blood and its disorders), shared it with Thaddeus Pope, an expert in medical and clinical law. ethics at the Mitchell Hamline School of Law in Saint Paul, Minnesota. Pope co-authored a January 2020 journal article in the Annals of Internal Medicine that first proposed redoing the UDDA.
“Thad: We are dealing with humans,” Nguyen wrote in the chat. “This is not the place or the time to impose uniformity for uniformity.”
“Doyen: Really? This is the UNIFORM law commission, which discusses the UNIFORM act of determining death,” the Pope replied.
When it comes to drafting legislation, vocabulary counts for everything. Opposing views were passionately issued on seemingly minute details. Within this group, there were two parts: one believes that death is best described as permanent, and the other believes that death is irreversible.
The distinction is subtle but critical. Fans of the latter definition argue that describing death as “permanent” doesn’t go far enough: death is only permanent if no medical action is taken, but irreversible means nothing can be done.
A North Dakota doctor named Christopher DeCock, who opted for the original Starship Enterprise bridge as a background, used another fantasy tale to make his Team Irreversible fandom known.
“This isn’t the bride princess, where you’re mostly dead,” she says, paraphrasing Billy Crystal’s comic relief curator, Miracle Max, from the 1987 classic. “Either you’re dead or you’re not dead.”
The debate over when death begins dates back more than half a century. Before that, death was pretty simple: life ended when the heart and lungs stopped working. But in 1959, two French doctors, Pierre Mollaret and Maurice Goulon, first documented a phenomenon they observed in two dozen patients connected to ventilators.
Unlike someone in a vegetative state, these patients could not breathe alone, nor did they respond to stimuli, not even reflexively. Nor did they show other signs of life typical of previous patients who were unaware; they did not sleep, for example. Their brains showed no electrical activity, ruling out any possibility of any kind of consciousness. This went further.
Mollaret and Goulon coined a new term for this condition: coma dépassé, or beyond a coma. The bodies lived, but the patients themselves did not.
A few years later, in 1963, a Belgian surgeon named Guy Alexander removed organs from the body of a patient whose condition was the same as those observed by French doctors. Because the patient’s organs were still being fed oxygen, they would be in better shape when transplanted into living patients. The donor’s brain was not working and the donor was in a coma, so what was the problem? All over the world, a large number 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. At the time, death was still defined as the loss of a pulse. According to this legal and medical definition, all those organ donors were still alive.
In 1968, in the face of this brave new world of organ transplantation, a small team met at Harvard University to work out a modern legal definition of death. Together, the group tried to answer two questions: When has a human brain stopped working irreversibly? And if the brain has stopped working forever but the heart keeps pumping, is that person dead?
Or, read another way: What is a life?
A patient with medically induced coma COVID-19 is connected to life support devices that provide blood pressure medications, antibiotics, sedation, feeding and breathing assistance at Mount Sinai South Nassau Hospital in Oceanside, New York, April 14, 2020.
Jeffrey Basinger / Newsday via Getty Images
The Harvard Historical Paper set out some basic criteria for determining when a brain is not operational. But the authors concluded that this state of “irreversible coma” did not need a legal definition. Whenever lawsuits are filed, they said, the courts should simply yield to the medical opinion of experts. In other words, these new issues of medical ethics should be judged on a case-by-case basis.
Alex Capron, a law expert in health policy and medical ethics currently at the University of Southern California, was one of the first law scholars to point out the flaws of this approach. In 1970, Kansas became the first state to enact a clumsily written law that recognized that a body that still functioned could belong to a person who was now legally dead. Other states began to follow through with their own individually written laws. Without a universal standard, Capron argued, death in the United States could become a legal and ethical mix, with different criteria in different states. That means someone could be alive in New York and dead in New Mexico. The country needed clear and consistent criteria, so that the courts would not be filled with lawsuits from distressed relatives whose loved ones were in a legal gray area between heaven and earth.
“For every story that monopolizes the headlines, there are many that are quietly reproduced in hospitals where grieving relatives are told that a mother, father, daughter or son, lying a few feet away with his chest still going up and down, he’s not really alive. ”
In 1980, Capron was appointed to chair a presidential commission to examine the issue. Representatives from the American Bar Association, the American Academy of Neurology, and the American Medical Association, meeting in Chicago, finally concluded that there should be two ways to determine death: or when the heart and the heart lungs have stopped working, or when the brain has stopped working. work.
Alexander Capron at the Medical Ethics Conference.
Denver Post
With this orientation in place, ULC commissioners met on the Hawaiian island of Kuaui the following year to formally draft a model law governing death: the UDDA. It was a fitting place: local legend says that the Waimea Canyon on the island is home to the souls of the recently dead.
The core of the UDDA consists of a single paragraph, which defines a dead person as:
A person who has suffered (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all brain functions, including brainstem … Death must be determined. in accordance with accepted medical regulations. standards.
– Law of uniform determination of death
These 42 words were the product of almost a decade of work by both doctors and lawyers. Thirty-six states soon adopted the exact language of the law. The rest only did small revisions. Essentially, the commissioners had formalized brain death, as it was colloquially known. The line between life and death was no longer a simple division between a beating heart and a still heart; as the following decades would show, the line had been remarkably perforated.
In the chat of Zoom’s call, Robert Truog, the director of the Harvard Center for Bioethics and a pediatric intensive care physician, had a bone to choose from: he wanted to know if others believed that “whole brain death.” where both the brain stem and the brain no longer function, equivalent to biological death.
He noted the case of a 4-year-old boy who remained in life support for 20 years. Over the years, she suffered a form of delayed puberty, despite a …