On October 11, 2023, the American Academy of Neurology (AAN) and several other medical societies released a revised brain death diagnosis guideline for physicians.  The previous 2010 guideline was questioned because it did not comply with the legal definition of death under the Uniform Determination of Death Act (UDDA).  After multiple legal challenges by families disputing a diagnosis of brain death/death by neurologic criteria (BD/DNC), the AAN petitioned the Uniform Law Commission (ULC) to revise and align the brain death law with AAN criteria.

In September 2023, the ULC declined to proceed with a revision to the UDDA.  So the AAN has released a new BD/DNC guideline incorporating most of the language tabled by the ULC.  Consequently, since most states’ brain death laws are modeled on the UDDA, the new guideline does not comply with state law except in Nevada.  In 2017, the Nevada Legislature changed that state’s laws so that now a diagnosis of BD/DNC must be made under the current guidelines of the AAN for adults or the Pediatric Section of the Society of Critical Care Medicine for children, including any subsequent revisions by these societies or their successor organizations.  By publishing this new guideline in a medical journal, the AAN has just changed the legal definition of death for every Nevada citizen.

The new guideline is a consensus statement from a panel of experts.  These experts were drawn from multiple medical societies and “specifically screened to exclude those individuals ... whose profession and intellectual bias would diminish the credibility of the guideline in the eyes of intended users.”  It seems that doctors with a different viewpoint were explicitly excluded from the panel.  In addition, “[b]ecause of the lack of high-quality evidence on the subject, a novel, evidence-informed formal consensus process was used.”  Strangely, after more than fifty years of diagnosing people “brain dead,” doctors still have no high-quality evidence for it!

The panel wrote the guideline using their experience; expertise; and, yes, shared biases using “a modified Delphi process,” consisting of three rounds of anonymous voting.  Whatever happened to the scientific method?  The Delphi process has weaknesses, as the linked article points out: “If the individuals in a group are misinformed about a topic, the use of Delphi will, like a traditional group meeting, add only confidence to their ignorance.”  By excluding dissenting voices and using the Delphi process, the brain death panel’s opinions reflect the consensus of a single point of view.

The new guideline states that BD/DNC occurs in individuals with catastrophic brain injury, no evidence of function of the “brain as a whole,” a condition that must be “permanent.”  What do these terms mean?

The term “brain as a whole” was reported this summer by neurologist James Bernat as a justification still being hashed out: “While the brain-as-a-whole criterion remains in an early stage of refinement, it probably entails cessation of all major brain functions required by the whole-brain criterion, particularly those of the brainstem, but not the relatively minor functions such as hypothalamic neurosecretion and, perhaps, random, disorganized EEG activity.”  Even though this criterion is still a work in progress, the new guideline proceeds to implement it without validation.  And under the “brain as a whole” formulation, people can be declared dead while parts of the brain are still working, as evidenced by electrical activity on EEG or continued functioning of the hypothalamus.

While the UDDA uses the term “irreversible,” the new guideline employs “permanent.”  Commonly, these words are used interchangeably, but in this context, they have very different definitions.  “Irreversible” means “incapable of being reversed” — an appropriate term, since no mortal can return from the dead without divine intervention.  According to the new guideline, “[t]he panel chose to use the term permanent to mean function was lost and (1) will not resume spontaneously, and (2) medical interventions will not be used to attempt restoration of function.”  The fact that medical interventions “will not be used” implies that they might have been used and might have been successful if used.  This fact alone reveals that these people are not dead, since there exists a possibility of resuscitation!

The guideline cautions that there are multiple reversible mimics of BD/DNC but does not mention the mimic par excellence — global ischemic penumbra (GIP).  GIP occurs when the blood flow to the brain is too low to allow function but not so low that brain damage occurs, the same way a power outage causes the lights to go out in your home but doesn’t damage the wiring.  GIP is likely why Jahi McMath fulfilled the 2010 guidelines and was pronounced “dead” in California but lived four more years in New Jersey while regaining some consciousness.  She improved to such an extent that she began correctly responding to questions, such as moving the middle finger consistently when asked, “Which is the ‘eff you’ finger?”  Jahi’s case proved that the 2010 guideline was faulty because a correctly performed BD/DNC diagnosis was shown to be reversible.  And under the 2023 guideline, Jahi would still have been diagnosed “dead,” a diagnosis that was ultimately proven incorrect.

The guideline includes an apnea test, which is performed by disconnecting the ventilator to see if rising carbon dioxide levels will stimulate breathing.  The apnea test is unethical because it does not benefit the patient and can only cause harm.  The guideline acknowledges that “[a]pnea testing can lead to complications, including hypoxemia and hemodynamic compromise with cardiovascular collapse requiring cardiopulmonary resuscitation.”  It also states: “Selection of targets for this challenge is arbitrary because no scientific data demonstrate specific PaCO2 above which medullary chemoreceptors would prompt respiration if they were functional.”  Thus, the BD/DNC guidelines put people with a brain injury through a test that cannot benefit them, may cause more brain damage, and has not been validated.

The guideline asserts that the diagnosis of BD/DNC is made at the bedside and that ancillary tests such as brain blood flow studies are not usually necessary.  They note that “all ancillary tests have shortcomings ... and none are 100% sensitive and specific.”  Really?  After fifty years, there is still no best practice to determine a death that is 100 percent accurate!

Are we ready to say enough is enough?  Death is not whatever an echo chamber of experts says it is.  The criteria for brain death have been revised repeatedly without scientific evidence.  The diagnosis itself is a self-fulfilling prophecy: most people diagnosed with BD/DNC very quickly have their support withdrawn or become organ donors.  It’s time to scrap these conjectured AAN guidelines and return to the traditional definition of death: cessation of cardiopulmonary function.

What can we do?  One of the best ways to resist the new BD/DNC guidelines is to refuse to be an organ donor.  If your loved one with a brain injury is on a ventilator, refuse the apnea test.  If you are a doctor, refuse to perform an apnea test, as it contradicts your oath to “do no harm.”  Advocate for adding an opt-out clause to your state’s BD/DNC laws.

Brain death is a legal fiction that removes civil rights from vulnerable brain-injured people, who, under the United States Constitution, possess an “inalienable right to life,” deserve protection, and should treated as mentally disabled persons.

Dr. Heidi Klessig manages the website respectforhumanlife.com.  Her new book, The Brain Death Fallacy, is available on Amazon.

Image: DeltaWorks via Pixabay, Pixabay License.