Proposal to redefine ‘brain death’ would put patients at risk of ‘false-positive’ death diagnoses, experts warn
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CHICAGO, Illinois, June 23, 2021 (LifeSiteNews) – A proposal to change the current definition of “brain death,” a concept first introduced to American lawmakers by the Uniform Law Commission (ULC) in 1981 and subsequently adopted into law in all 50 U.S. states, has come under fire for its potential to allow false death diagnoses and the successive harvesting of body parts while patients are still living.
As things stand, the Uniform Determination of Death Act (UDDA), a document designed to unify the legal definition of death with medical consensus on when a death has occurred, lists two possible options for when an individual can legally be declared deceased: the individual must have suffered “irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem.”
The second definition, an “irreversible” halting of brain function commonly known as “brain death” (BD), has been subject to much scrutiny and, according to a group of 107 experts in the fields of “medicine, bioethics, philosophy, and law,” the definition is in need of revision.
The group, whose members “span a wide range of professions, world views, and nationalities,” highlighted a flaw in the foundational assumption of the UDDA’s definition of BD in a 35-page document published in the Journal of Medicine and Philosophy. Specifically, the group questions the assumption that the brain functions as “central somatic integrator,” the total loss of function of which would lead to the complete disintegration of the body, an assumption they say has been “proved erroneous.”
A proposal for revision of the UDDA definition of BD is currently under review by a study team at the ULC. The proposal, dubbed the Revised UDDA (RUDDA), was published in the Annals of Internal Medicine in January 2020 and seeks to amend the definition of so-called “brain death” in three distinct ways: to recognize the standards of the American Academy of Neurology (AAN) for determination of brain death in adults as the legal “medical standard;” to limit “brain function” from including hypothalamic function; and to remove the necessity of patient (or family) consent for doctors to perform dangerous BD tests, even authorizing physicians to override the express wish of a patient’s proxy.
The group of more than 100 experts, including Catholic philosopher Dr. Josef Seifert, admitted that a change in definition of BD is “indeed long overdue,” yet warn that the changes proposed in the proposed RUDDA are “not the way to do it” and “strongly urges rejection” of the revisions proffered in the RUDDA.
Headed by Dr. Alan Shewmon, M.D., professor emeritus of neurology and pediatrics at UCLA, the group complained that the changes proposed by the RUDDA would leave patients liable to “a non-negligible risk of false-positive error (misdiagnosing a live patient as dead).”
LifeSiteNews spoke at length with Dr. Joseph Eble, managing partner of Fidelis Radiology and president of the Tulsa Guild of the Catholic Medical Association. As one of the signatories of the statement in opposition to the proposed RUDDA, Eble explained a number of fundamental problems underlying the principles of BD, first among them is that BD, as a diagnosis, is incongruous with the scientific determination of the death of the human person, as well as falling short on moral and ethical grounds.
Eble highlighted that, in the first place, BD does not correspond to biological death, rendering the classification invalid. In fact, Eble maintains that “scientists, philosophers, and theologians have known this for quite a long time,” adding that, “incidentally, two-thirds of neurologists don’t believe that BD is biological death. Essentially they believe that the patient’s quality of life is so low that we can take their organs.”
Originally, when brain death criteria were first enunciated in 1968 by members of Harvard Medical School, they introduced the idea as “irreversible coma as a new criterion for death.’” Eble said that, “up until that time, there was no such medical designation as brain death. The term ‘coma’ indicates that a person is still alive because by definition when you are in a coma you are not dead, you’re alive.”
“Yet this is what became known as brain death,” he said. “This is the same sort of semantic gymnastics that was used in the abortion debate. We kept changing the language so that people’s consciences would not be aroused.”
Eble explained that later, when BD was put into legislative language by the ULC, it was presented as representing biological death, meaning that “if the brain were completely dead, shortly thereafter true death simpliciter would occur, with cardiopulmonary cessation,” that is, with the termination of heart and lung function. But, according to Eble, “that has been definitively proved to not be the case.”
To demonstrate, Eble referenced the example of TK, a 4-year-old boy whose brain was completely destroyed by bacterial meningitis. “He continued to survive that way for another 20 years. His body fought infection, he grew, he healed wounds, he made temperature and electrolyte balance, all these persistent integrative functions demonstrating the presence of the soul.”
Upon TK’s death, an autopsy revealed that “there was no neural tissue whatsoever, none. Only a calcified spherical mass filled with grumous material and cystic spaces,” Eble said. Given the lack of any brain tissue, TK fell under the ULC’s categorization of BD, having suffered an ostensibly “irreversible cessation of all brain function.” Accordingly, Eble declared “we now have definitive evidence that brain death does not represent biological death.”
Despite the evidence of life in supposedly brain dead patients, the proposed RUDDA would seek to relax the definition of brain death to exclude the necessity of all brain function to cease.
Eble continued to explain the provisions set out in the RUDDA, admitting that the measures raise “all kinds of red flags.” Most important, the proposed changes to brain function cessation include a caveat for activity in the hypothalamic pituitary axis, a part of the brain that controls many important bodily processes.
“About half of all brain death patients have persistent function of the hypothalamic pituitary axis,” said Eble, meaning that as many patients are declared BD while still exhibiting brain function. The AAN’s recommended bedside clinical examination for BD, the dangerous apnea test, “cannot exclude the possibility of the return of some brain function.”
Eble goes on to explain:
“The examination gives no direct window into the structural integrity of the brain. Irreversibility is simply inferred based upon the cause of the brain damage, reversible factors being excluded, and waiting a period of time. But this is problematic because not all reversible factors can be clinically excluded, and the period of time they wait keeps getting shorter and shorter for the purposes of organ transplantation.”
The AAN’s guidelines then “falsely equate unresponsiveness with unconsciousness, which, as we know, is a fallacy of logic,” he added. Consequently, the group’s statement asserts that “(t)o exclude hypothalamic function as irrelevant to the distinction between organismal life and death is ad hoc and simply conceptual gerrymandering in order to maximize the number of BD diagnoses.”
In all, this means that the AAN guidelines violate the current law (UDDA) around BD declarations, which stipulates “irreversible cessation of all brain function.” “The way they try to solve this,” Eble charged, “is by changing the law. The new proposal thus says the hypothalamic pituitary axis can continue to function, and this is okay.”
Eble went on to address the issue of what he described as the “illogical division of the moral significance of the brain and spinal cord” in the AAN’s guidelines, even though “both are components of the central nervous system.”
“Your brain and spinal cord are in continuity with one another. They have continuous neural tracts running between the two of them,” explained the physician. “Yet, magically, according to this idea of brain death, when these continuous neural tracts leave the skull and cross through the skull base, they magically lose moral significance.”
“The skull is completely extraneous to the neural system,” he continued. “We are told that neural tracts in the brain have moral significance and that once the brain ceases to function the patient is dead. However, we are told those same neural tracts in the spinal cord lack moral significance and continued function of the spinal cord is compatible with life.” The current AAN guidelines allow a declaration of BD despite the persistent function of the hypothalamic pituitary axis, which is part of the brain. “The proposed RUDDA would simply make it explicit that this is legally acceptable as well.”
To say one part of the brain is healthy yet the patient is considered brain dead is “logically incoherent,” Eble added. Accordingly, such logical inconsistencies reveal that the AAN “make the rules up as (they) go to continue to justify brain death,” he said.
In addition to the inconclusive nature of the AAN’s primary means of testing for BD, the apnea test poses a grave danger to the life of critically ill patients by putting such people through a rigorous testing regimen, stopping their ventilators for several minutes and increasing their blood CO2 levels. “The apnea test can create the self-fulfilling prophecy of BD … if you weren’t dead before the apnea test, you may be dead now,” Eble commented.
This unreliability and danger is coupled with a lack of necessity for utilization of the apnea test based on the internal logic of the AAN guidelines. If the apnea test cannot be be performed, the AAN permits a diagnosis of BD using an ancillary test like the electroencephalogram (EEG). “Logically, given its inherent risk, particularly causing BD, there’s no coherent reason why the apnea test should ever be performed. It is simply an unethical procedure.”
Within their statement, Eble and his colleagues pointed out that “ancillary studies like the electroencephalogram and cerebral perfusion studies are incapable of determining the irreversible loss of all brain function.” They detailed that the EEG “measures functioning of only part of the cerebral cortex and none of the brainstem; neither does it establish irreversibility of non-functioning even of the cortical surface.” Accordingly, such methodologies for determining BD do not “exclude the possibility of return of some brain function,” they said. Indeed, the report documented occasions of patients diagnosed with BD having gone on to live, some for many years.
One example Eble referenced was that of Zack Dunlap, who was “declared brain dead, he was going to have his organs harvested, and it was called off at the very last minute because he was moving.” Though he had apparently shown “irreversible cessation of all brain activity,” “Zack completely recovered, and when he was being interviewed later on television, he said, ‘I could hear the doctor say that I was brain dead and that they were going to take my organs, but there was nothing I could do, I couldn’t say anything, I couldn’t respond.’”
“Irreversibility can never be a certainty,” Eble emphasized. “The (AAN’s) BD guideline therefore cannot guarantee what the current UDDA demands.” “Using the AAN guidelines, a living person can be misdiagnosed as dead.”
Despite the impossibility of accurately diagnosing BD, not to mention the implicit incoherence of the term, the proposed RUDDA does not provide “an exemption clause for people who do not accept BD criteria, including religious exemptions,” and excludes the need for informed consent to the apnea test. “The evidence is overwhelming that BD is invalid,” yet proponents of BD “keep coming up with increasingly implausible justifications for their support of BD.”
The signatories of the statement opposing RUDDA lamented the proposed usurpation of patients’ rights and the freedom over their own bodies to refuse the “potentially risky” test. Eble told LifeSiteNews that the RUDDA “would allow the cornerstone test for BD, the apnea test, to be done without informed consent (of the patient).” However, Eble explained that the apnea test “has no benefits.” “The most important risk,” on the other hand, “is that the apnea test can cause the very condition it is intended to diagnose … Yet this proposed revision wants to do away with informed consent for this test.”
Patients will not be required to consent to the procedure, nor will a proxy’s objections be considered final under the changes proposed by RUDDA, allowing doctors to overrule any prior wishes made by a patient and prompting the signatories to declare that “the proposed elimination of consent for the apnea test violates patients’ fundamental right against battery.”
“Given that the law requires informed consent for many other, less risky and more beneficial procedures (and even to perform an examination in general),” they continued, “it is not clear why the apnea test should be exempt from this ethical and legal requirement.”
“The proposed RUDDA attempts to salvage the status quo, which is deeply flawed. The diagnostic guidelines it endorses run the risk of declaring a living person dead, which is an unacceptable risk. Human persons, no matter how wounded, are made in the image and likeness of God and are never expendable – even for the good of organ transplantation,” Eble said.
LifeSiteNews corresponded with a Catholic theologian on the matter of brain death in relation to organ donation. Although he admitted that he has not made a comprehensive study of the topic, his “general impression is that brain death is an irrational category that was probably invented in order to take fresh organs.”
“If the person's heart is still beating, and supplying the organs of the body with blood,” the theologian continued, “then it seems to me that he is alive, and killing him to take his organs is therefore a form of murder.”
“Some Catholic philosophers have proposed that the absence or diminution of brain activity could imply that the spiritual soul had departed and been replaced with a merely animal soul. It is doubtful to me whether that is coherent, but even if it were it would be merely an untestable hypothesis and therefore it would not be legitimate to act upon it by killing the living being to harvest the organs.”
Eble noted that many Americans sign up to become organ donors through their driver’s license, but he argued that this does not constitute informed consent, as signers are not told that they have actually “agreed to be declared dead by brain death criteria.”
“If you say to the average person, ‘if you sign up to be an organ donor you can be declared dead by BD criteria,’ and then you say to them ‘brain dead patients have a beating heart. They have warm, pink skin. They have supple flesh. They look just like every other patient in the ICU.’ They might ask, ‘Are you sure they’re dead?’” Eble posited.
He contends that one would have to reply: “Well, actually, they’re not biologically dead, they are biologically alive. We just completely created brain death in order to justify taking their organs.”
Eble outlined that while “the goal of organ transplantation is to save lives,” at the same time “lives cannot be saved at the expense of other people’s lives, including sick or dying people … that is making a utilitarian wager that the good of organ transplantation outweighs the value and rights of the human person.” Continuing, the distinguished doctor declared, “a human person can never lose their dignity; they can only be treated in an undignified way.”
“We did not get our dignity from one another; God gave us our dignity by making us in His image and likeness … Each of us was redeemed by the Precious Blood of the Lamb, none of us is expendable. Even people in an irreversible coma are not expendable.”
“All the evidence, be that at the medical, metaphysical, or bio-philosophical level, it all confirms what the layperson intuitively knows, that is, that brain death is not equivalent to the death of the human person. Brain death is the culture of death disguised as the culture of life.”
“The reality has been carefully hidden from us,” Eble said. “This proposed revision will go through with nobody noticing. No one will know. Now is the time for the public to know the truth. Now is the time that people have a voice.”
“People cannot be sacrificed for their organs; it is morally corrupt. This proposed revision is just the first step in an increasingly permissive standard to declare someone brain dead.”