It was March 10, 2022—day one of a virtual forum held on Zoom to rewrite the Uniform Determination of Death Act (UDDA), a draft law that for four decades has been the basis for determining who is alive and who is dead in USA. Many of those gathered were lawyers who are members of the Uniform Law Commission (ULC), a quasi-governmental entity that dates back 125 years. It’s a packed meeting of five dozen guests from both the legal and medical fields. Each of them was eager to share their own perspective on a subject that at first glance can seem quite comprehensive – until one really digs deep into the legal and medical nuances behind trying to define death itself.
The ULC is the perfect forum for this kind of debate. Chaos can ensue for laws that are left up to the states, with each different state choosing to follow its own wildly different set of rules.. Where each state – and therefore the US as a whole – would benefit from uniformity, the ULC drafts bills that are then submitted to each legislature for adoption. This usually means grappling with relatively mundane issues like child custody or trucking rules.
That day, the ULC tackled something more existential. Unfortunately, even matters of life and death are prone to hiccups on Zoom. Dr. Malcolm Shaner, a neuroscientist at the University of California, Los Angeles, encountered some difficulties while trying to reach out to the group.
“It looks like you’re muted,” said Arizona Court of Appeals Judge Samuel Tuma, the meeting’s presiding judge, a faint note of amusement creeping into his voice. His majestic image was enhanced by the wall of thick law books on his back. “Oh, there it is.”
“The country needed clear, consistent criteria – so that the courts would not be swamped with lawsuits from anguished family members whose loved ones lie in a legal gray area between heaven and earth.”
Shanner, dressed in a suit and tie that completely contradicts the Zoom rainforest backdrop behind him, began a monologue about brainstems, reflexes, and their connection to consciousness. Despite the thick medical jargon, many in the digital windows nodded.
For several hours, Thumma kept things moving, calling out individual speakers as they raised their hands via digital emoticons. The chat was overflowing with heated but respectful debates.
Dr. Doyen Nguyen, professor of moral theology and bioethics at Pontifex University in Atlanta, who is also a physician specializing in diagnostic hematology (the study of blood and its disorders), found this out with Thaddeus Pope, an expert in medical law and clinical ethics at Mitchell Hamline School of Law in St. Paul, Minnesota. Pope co-authored a January 2020 journal article in the Annals of Internal Medicine that first proposed a revision of the UDDA.
“Tad: We’re dealing with human beings,” Nguyen wrote in the chat. “This is neither the place nor the time to impose uniformity for uniformity’s sake.”
“Doyenne: Really? It is the ONLY legal committee that discusses the ONLY definition of the act of death,” Pope replied.
When drafting legislation, vocabulary counts for everything. Opposing viewpoints were passionately aired over seemingly minor details. There were two sides to this group: One believed that death was best described as permanent, and the other believed that death was irreversible.
The difference is subtle but critical. Adherents of the latter definition argue that describing death as “permanent” does not go far enough—death is only permanent if no medical action is taken, but irreversible means that nothing can be done.
A doctor from North Dakota named Christopher DeCock, who chose the bridge of the original Starship Enterprise as his backdrop, used another fantasy story to make his Team Irreversible fandom known.
“It’s not Princess Bride where you’re almost dead,” he says, paraphrasing Billy Crystal’s comedic healer Miracle Max from the 1987 classic. “You’re either 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 functioning. But in 1959, two French doctors, Pierre Molaret and Maurice Goulon, first documented a phenomenon they observed in two dozen patients who were connected to ventilators.
Unlike someone in a vegetative state, these patients could not breathe on their own, nor did they respond to stimuli, even reflexively. Nor did they show any other signs of life typical of previous patients who had been unconscious—for example, not sleeping. Their brains show no electrical activity, ruling out any chance for any kind of consciousness. This went further.
Mollaret and Goulon introduced a new term for this condition: coma dépassé or beyond coma. The bodies came to life, but the patients themselves did not.
A few years later, in 1963, a Belgian surgeon named Guy Alexandre removed organs from the body of a patient whose condition was the same as that observed by the French doctors. Because the patient’s organs are still receiving oxygen, they will be in better shape when transplanted into living patients. The donor’s brain wasn’t functioning and the donor was in a coma dépassé, so what was the problem? A large number of organ transplants followed worldwide, 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. By this legal and medical definition, all of these organ donors were still alive.
In 1968, faced with this brave new world of organ transplantation, a small team gathered at Harvard University to craft a modern legal definition of death. Together, the group sought to answer two questions: When did the human brain irreversibly cease to function? And if the brain has stopped functioning forever, but the heart continues to pump, is that person dead?
Or, read another way: What is life?
A COVID-19 patient in a medically induced coma is connected to life support devices providing blood pressure medication, antibiotics, sedation, nutrition and respiratory support at Mount Sinai South Nassau Hospital in Oceanside, New York on April 14, 2020.
Jeffrey Basinger/Newsday via Getty Images
The landmark Harvard paper lays out some basic criteria for determining when the brain is malfunctioning. But the authors conclude that this state of “irreversible coma” needs no legal definition. Whenever lawsuits arise, they said, courts simply have to defer to expert medical opinion. In other words, these new issues in medical ethics will have to be assessed on a case-by-case basis.
Alex Capron, a legal expert on health policy and medical ethics currently at the University of Southern California, was among the first legal scholars to point out the shortcomings of this approach. In 1970, Kansas became the first state to pass a clumsily written law recognizing that a still-functioning organ could belong to a person who is now legally dead. Other states began to follow suit with their own individually written laws. Without a universal standard, Capron argues, death in the United States can become a legal and ethical mish-mash with different criteria in different states. That means someone could be alive in New York and dead in New Mexico. The country needed clear, consistent criteria to keep the courts from being swamped with lawsuits from tortured family members whose loved ones lie in a legal gray area between heaven and earth.
“For every headline-grabbing tale, there are many others that play out quietly in hospitals, where grieving relatives are told that a mother or a father, a daughter or a son, who lies just feet away from them with their breasts still rise and fall, not really alive. “
In 1980, Capron was appointed to head a presidential commission to investigate the matter. Representatives of the American Bar Association, the American Academy of Neurology, and the American Medical Association, meeting in Chicago, eventually concluded that there should be two ways to determine death: either when the heart and lungs have stopped working, or when the brain is stopped working.
Alexander Kapron at a conference on medical ethics.
Denver Post
With these guidelines, ULC commissioners gathered on the Hawaiian island of Kauai the following year to formally draft a model law governing death—the UDDA. It was a fitting place: local legend has it that the island’s Waimea Canyon is home to the souls of the recently deceased.
The core of the UDDA consists of only one paragraph which defines a dead person as:
An individual who has suffered (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brainstem… Death must be determined in accordance with accepted medical standards.
— The uniform law for determining death
These 42 words are the product of nearly a decade of work by both doctors and lawyers. Thirty-six states soon adopted the exact language of the law. The rest made only minor revisions. In essence, the commissioners formalized brain death, as it became colloquially known. No longer was the line between life and death a mere division between a beating and a still heart; as the following decades would prove, the line had become remarkably perforated.
In the Zoom chat, Robert Truog, director of the Harvard Center for Bioethics and a practicing pediatric intensive care clinician, had a bone to crack: He wanted to know if others believed that “whole brain death”—where both the brain stem and the brain no longer functions – equated to biological death.
He pointed to the case of a 4-year-old boy who was on a device for 20 years. Over the years, he suffered a delayed form of puberty, despite…
Add Comment