Catholic bioethicists: Lack of agreement about brain death imperils patients, organ donations

By Gina Christian, OSV News

PHILADELPHIA (OSV News) -- Catholic bioethicists are sounding the alarm about a critical lack of agreement on what constitutes brain death; and the implications for organ donation are "profound," they said.

The National Catholic Bioethics Center, based near Philadelphia, released an April 11 statement on "Integrity in the Determination of Brain Death: Recent Challenges and Next Steps."

The NCBC said in its statement there had been "a decisive breakdown in the public consensus on death and organ donation," following "the failure of recent efforts to resolve an important dispute regarding the determination of brain death."

Catholic teaching supports organ donation, which Pope St. John Paul II called "a particularly praiseworthy example" of "everyday heroism," so long as the donation is made with free and informed consent, and the donor is truly dead. The act of removing the organs must not kill the donor.

But recent efforts to change the definition of death stand to erode those ethical standards, said the NCBC, whose statement was prompted by two key developments.

The first was a proposed revision to the 1981 Uniform Determination of Death Act, or UDDA, on the criteria for determining death. That change was put on hold in September 2023 after pushback from several organizations, including the NCBC and the U.S. Conference of Catholic Bishops.

The second was the October 2023 publication of revised guidelines on the issue by the American Academy of Neurology, the Child Neurology Society and the Society of Critical Care Medicine, which now enable clinicians to declare brain death despite evidence of neuroendocrine function.

The neuroendocrine system, which includes the part of the brain known as the hypothalamus, regulates a number of key activities, such as temperature, the balance between salt and water in the body, sleep and sex drive. The hypothalamus may also play a role in awareness and pain detection.

The UDDA (approved by the American Medical Association in 1980 and the American Bar Association in 1981) states that a person can be declared dead following the "irreversible" shutdown of circulatory and respiratory functions, or of "all functions of the entire brain, including the brain stem."

The determination of death must be made "in accordance with accepted medical standards," the act states.

In recent years, however, "a lot of people thought, 'It's a 40-year-old law; maybe we need to revise it,'" NCBC executive vice president John Brehany told OSV News. "We think there were some bad proposals (to do so)."

Those "bad proposals" relate to testing for brain death, said Brehany.

"The law pretty much says that … brain death involves all irreversible cessation of all functions of the entire brain," he said. "And yet the guidelines of the most influential organization (the AAN) were not testing for all functions ... of the entire brain. We think that's very problematic."

In July 2023, the NCBC and the USCCB submitted a joint letter to the Uniform Law Commission, expressing "serious reservations" about changing the UDDA text to read "permanent cessation of circulatory and respiratory functions; or permanent coma, cessation of spontaneous respiratory functions, and loss of brainstem reflexes."

"The proposed revision would replace the standard of whole brain death with one of partial brain death," thereby allowing "patients who exhibit partial brain function to be declared 'legally dead' when they are not biologically dead," said the NCBC and the USCCB in their July 2023 letter.

But the move by the AAN and its fellow groups to proceed with their own updates "represent(s) a formal breach in a longstanding consensus in law and public policy," said the NCBC in its latest statement, adding that "these issues should be of profound concern to Catholics, in particular to Catholic health care institutions and professionals."

Both Brehany and Charles Camosy, professor of medical humanities at Creighton University, told OSV News that lifesaving technologies have made a precise determination of death even more urgent.

Medical death was historically viewed from a cardiopulmonary perspective, said Camosy. In other words, "If your heart stops beating and you stop breathing, you're dead," he said.

But "things get a lot trickier when (a patient is) in an intensive care unit," said Brehany.

"We developed the ventilator, which kept people alive who otherwise would have died from a traumatic brain injury by helping them breathe," Camosy said. "We developed the ability to transplant non-paired vital organs, like a heart, into another human being."

Such advances led an ad hoc committee at Harvard Medical School to issue a 1968 paper on defining what was meant by an irreversible coma.

The UDDA "essentially used the language that the committee came up with," Camosy said.

Even then, determining brain death can be fraught with uncertainty, he added.

Camosy pointed to the case of Jahi McMath, who in 2013 was declared brain dead following complications from surgery for sleep apnea. Her family fought to keep her on a ventilator due to their deeply held Christian beliefs and signs of life they had perceived in McMath, such as finger and toe movements. They eventually relocated to New Jersey, where state law allows religious exemptions for faiths that do not recognize brain death. McMath entered puberty, experiencing three documented menstrual cycles, and died in 2018 after intestinal surgery.

The AAN changes, based on a less than complete assessment of brain death, stand to hurt both potential organ donors and the more than 103,000 individuals in the U.S. awaiting organ transplants, said both Camosy and Brehany.

"I'm not sure we should really be taking organs from people if we're not sure that they're dead," said Camosy.

In its recent statement, the NCBC called on Catholics to take three action steps regarding the issue.

"First, Catholics must restate and explain better a clear, philosophically coherent concept of death that is compatible with Catholic teachings and rigorous, consistent clinical testing," said the NCBC. "A whole brain death standard has appeared to be compatible with Catholic teachings. A partial brain death standard can never be acceptable to Catholics."

In addition, "Catholics must reaffirm and strengthen ethical standards and protocols for the determination of death," said the NCBC. "With regard to ethical standards, we must help to articulate and properly integrate the many goods and demands inherent in post-mortem organ donation."

Lastly, widespread education on the issue is essential for "clinical and administrative leaders ... organ donors (current and potential), families, clergy and the public," said the NCBC.

It added, "Completing the tasks outlined above will require timely action, focused attention, and the collaboration of individuals and institutions with the requisite expertise."