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Doctors and Lawyers Debate Meaning of Death as Families Challenge Practices (WSJ)

Wall Street Journal title: Doctors and Lawyers Debate Meaning of Death as Families Challenge Practices
WSJ subtitle: Changing the determination of brain death potentially affects organ donation
By: Amy Dockser Marcus
Date: 11 December 2022

“How doctors determine death is up for debate.

For more than four decades, death in the U.S. has been determined in two main ways. Life ends when the heart and lungs stop working. Or physicians might declare a person brain-dead, defined as the irreversible cessation of all brain function, even if the heart and lungs can be maintained with machines.

A group of lawyers as well as observers including neurologists and philosophers met Friday and Saturday to discuss potential revisions to the determination. The group, part of the Uniform Law Commission, also addressed updating policies surrounding the notification of families about the process for determining death.

The commission is a nonpartisan group of lawyers established over 100 years ago to draft uniform legislation for states on issues including child custody and estate planning. It is up to states whether to adopt the commission’s recommendations.  

The drafting process typically takes two years. Samuel Thumma, a judge on the Arizona Court of Appeals and chair of the drafting committee, decided in April that the group needed an additional year to work through the various issues of contention. 

“We are in the middle of the river,” Judge Thumma said. “We haven’t gotten to the other side.”

The concept of brain death has generated intense controversy in recent years, in part because death isn’t only a medical determination. People bring deeply held beliefs to their understanding of death. Declaring someone dead also has social and legal ramifications, including for mourning, inheritance and organ donation. 

Brain death is a legal designation in all 50 states. How brain death is determined, which tests are used and the type of physician qualified to make the determination can vary by state, said Thaddeus Mason Pope, a law professor at Mitchell Hamline School of Law in St. Paul, Minn.

In recent years, families have objected to doctors conducting brain-death evaluations on their loved ones. Some have filed lawsuits challenging brain-death determinations. And some doctors and lawyers have said guidelines for determining brain death don’t require tests for the loss of function in every part of the brain, such as the hypothalamus, which regulates hormones. The gap between the legal determination of brain death, they said, and the way doctors interpret it could erode public trust.

Prof. Pope and two colleagues in 2020 co-wrote an article in the Annals of Internal Medicine calling for revisions to the Uniform Determination of Death Act to address these and other challenges. They took their proposal to the Uniform Law Commission, which established the 13-member drafting committee and the group of observers last year to assess the matter.

James Bopp Jr., a member of the drafting committee, proposed a revision that would get rid of brain death altogether. Mr. Bopp, who runs a law firm in Terre Haute, Ind., and serves as general counsel of the National Right to Life Committee, said he sees parallels between his work opposing abortion and his objections to declaring someone dead based on the loss of brain function.

He said he believes a fetus is entitled to legal protection from the moment of conception, even if the fetus “does not yet exercise functions we identify as human.” Similarly, he said, people are entitled to legal protection at the end of life, even if their brains are so damaged that they won’t regain consciousness.

“It is the identical debate, just in a different context,” Mr. Bopp said.

The drafting committee voted against Mr. Bopp’s suggestion at the April meeting. Mr. Bopp said he plans to continue advocating for his approach.

Eliminating brain death from the determination of death could exacerbate organ shortages, opponents of Mr. Bopp’s proposal said.

Brain death represents a little over 2% of hospital deaths in the U.S., according to a 2020 paper in the journal Clinical Neurology and Neurosurgery. Meanwhile, brain-dead people represent the majority of deceased organ donors, according to data collected from 1988 through October 2022 by the United Network for Organ Sharing, the nonprofit that manages the nation’s organ-transplantation system. More than 100,000 people are on the national waiting list for kidneys, hearts and other organs, UNOS said.

“Without brain death, most of the U.S. organ transplant system goes away,” Prof. Pope said.

Scientists long believed the brain was the body’s central controller; when the brain stopped functioning, the body did so too. Over the years, research has challenged this conception. People who are brain-dead can survive for many years with biological functions, such as undergoing puberty or gestating a fetus.

Recent scientific advances raise the prospect of further blurring the line between life and death. Researchers at a neuroscience lab at Yale University reported earlier this year that they had devised an experimental system that restored function to the hearts, lungs and brains of pigs that had been dead for an hour.

If the drafting committee reaches a consensus on a new determination of death that is ultimately accepted by the Uniform Law Commission, the debate could extend to state legislatures, which would decide whether to adopt it into law. Political debates over the determination could lead more states to include exemptions for people that don’t accept brain death for religious or other reasons, according to legal experts. New Jersey is the only state that allows families to seek a religious exemption and still receive insurance coverage for a ventilator to sustain a brain-dead person.

Peter Langrock, founder of the Middlebury, Vt., law firm Langrock Sperry & Wool and a member of the drafting committee, said reopening the determination of death could lead more states to adopt similar exemptions.

“Instead of improving uniformity over death,” Mr. Langrock said, “we might have the opposite effect.”



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