Written by Heidi Klessig MD and originally published on LifeSite News on March 7, 2025. Read the original article here.
Although the conference featured speakers both for and against "brain death," attendees had one very significant area of complete agreement: data to justify the brain death diagnosis is sadly lacking.
Citing “a decisive breakdown in a shared understanding of brain death,” the National Catholic Bioethics Center, along with the Center for Law and the Human Person at the Catholic University of America and the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center convened a symposium on brain death in Washington DC last week (February 27-28, 2025). The symposium, “Integrity in the Concept and Determination of Brain Death: Recent Challenges in Medicine, Law, and Culture,” was prompted by the newest American Academy of Neurology (AAN) brain death diagnosis guideline which explicitly states that brain death may be declared in the presence of ongoing partial brain function.
The latest brain death guideline allows death to be declared while parts of the brain are still functioning.
The symposium was attended by doctors, nurses, lawyers, philosophers, and clergy. Dr. John Brehany, the NCBC’s Executive Vice President & Director of Institutional Relations, commented: “It can be daunting to address complex, contentious issues in bioethics. And so, it was a blessing last week at the symposium to see so many diverse people come together to learn, reflect, and dialogue on how to respond to the challenging issues posed by the breakdown in clinical and legal standards for the determination of death by neurologic criteria. I hope and pray that we can successfully build upon this effort.”
The first presentations centered on whether there is any philosophical basis for the idea of brain death. Dr. Daniel Sulmasy presented the philosophical case in favor of brain death, which was based on the idea that the brain is necessary to maintain an integrated body, and that brain death is similar to “functional decapitation." But the validity of this analogy is questionable because in decapitation people die by catastrophic shock and blood loss: decapitation cannot be reduced to just brain destruction.
The philosophical case against brain death was presented by Dr. Michel Accad, who denied that the brain, a part of the body itself, could be responsible for the integration of the body as a whole. He pointed out that we begin life as a body-soul unity from the moment of our conception as a single cell, and this unity persists throughout our lives because the soul, not the brain, is the integrator of the body. This concept is even reflected in our English language: when a person’s soul departs, the corpse is no longer referred to as a unity, but as a plurality, “the remains.”
Nurses at the conference described the struggle they face when the same nurse has to shift immediately from patient care to organ care the moment a brain death diagnosis is made. They said that many good nurses leave intensive care unit work because of the intellectual and emotional challenges surrounding a brain death diagnosis.
The latest brain death guideline explicitly states that clinicians do not need to obtain informed consent before a brain death evaluation.
A major concern about the new AAN brain death guideline is that it does not require informed consent for brain death testing in general and for the apnea test in particular. During the apnea test, the patient is disconnected from the ventilator for ten or more minutes to see if he will breathe on his own. The apnea test has no benefit for the health of the patient being tested, and only benefits those who might receive his organs. And the apnea test can be risky: according to the AAN guideline it can cause “hypoxemia and hemodynamic compromise with cardiovascular collapse requiring cardiopulmonary resuscitation,” Because the test has no benefit for the patient and can potentially cause harm, Dr. Allen Roberts of Georgetown Medical Center proposed that the apnea test should require informed consent.
Three doctors presented differing viewpoints on the validity of the AAN guidelines. Dr. Allen Aksamit advocated for continuing to use the AAN guidelines despite the fact that they allow death to be declared in the presence of ongoing brain function. Dr. Chris DeCock, on the other hand, pointed out that between 50-84% of people declared brain dead still have a functioning hypothalamus. The hypothalamus is an important part of the brain that regulates temperature, salt-water balance, sex drive, sleep, awareness and pain detection. He called for adding tests of hypothalamic function to the AAN guideline, saying that anyone with a functioning hypothalamus should not be declared to be dead.
My presentation was entitled: “Why the AAN 2023 Brain Death Guideline Cannot Be Accepted.” After showing that there are no tests, studies, or evidence for brain death, and that the current guideline admits there is a “lack of high-quality evidence on the subject,” I presented the case of Jahi McMath. Jahi was indisputably declared brain dead “correctly” according to the guidelines but recovered brain function to the point of being able to follow commands. At the time of her brain death diagnosis, her doctor charted that she had also lost hypothalamic function, which he said, “suggests hypothalamic death.” But several months later, after receiving proper care for her brain injury, Jahi began menstruating. Menstruation is mediated by a functioning hypothalamus. Thus, those who advocate for using the current AAN guideline, and those who would add tests of hypothalamic function to this guideline, would BOTH have declared Jahi “dead”…even though subsequent events proved that she was alive.
Jahi McMath indisputably was declared brain dead "correctly" and had "hypothalamic death." But she was not dead, and with proper care recovered neurologic function.
Dr. Charles Camosy said that the amount of uncertainty and disagreement about brain death speaks to the need for a robust defense of conscience concerns among patients, providers, and institutions. He lamented that the 2023 AAN guideline has no conscience protections despite the lack of consensus, citing poll results taken by symposium attendees showing that only ~25% agreed with the AAN guideline. Dr. Jason Eberl agreed that conscience is a fundamental human right but wasn’t sure how boundaries could be drawn to satisfy every point of view.
Lawyer Nikolas Nikas spoke on the variety of brain death laws in the various states, and pointed out that a law only binds one’s conscience if it is just. And James Bopp JD reviewed the recent push to revise the Uniform Determination of Death Act, which uses a biological definition of death, to a new version based on a quality of life view. Thankfully, the efforts to change the law have been paused due to a lack of consensus among the Uniform Law Commission’s revising committee.
We have no device for determining when the soul departs.
In conclusion, the conference attendees had one very significant area of complete agreement: data to justify the brain death diagnosis is sadly lacking. We have been declaring people to be “brain dead” and using them as organ donors for nearly sixty years without any high-quality evidence to justify this practice. Based on this, some speakers and attendees called for a moratorium on diagnosing brain death. But others were for continuing to use these neurologically disabled people as organ donors while someone does a study. During the brainstorming session about what parameters should be tested in this proposed study, a philosopher raised her hand. “What will be your endpoint, given that we have no device to determine when the soul departs?”
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