Heidi Klessig MD
This commentary explores ongoing debates surrounding the concept of brain death, reviewing historical definitions, legal standards, published case reports, and ethical questions regarding informed consent and organ donation.
Is brain death equivalent to biological death? This opinion article examines the evolving medical, legal, and ethical discussions surrounding brain death, highlighting published case reports and questioning current diagnostic standards and their implications for organ donation and informed consent.
Introduction
The idea of brain death is coming under increasing scrutiny as doctors, lawyers, philosophers, and theologians recognize that these unfortunate neurologically injured people are still biologically alive. But despite an ongoing vigorous debate about the validity of brain death in the academic literature, the public remains largely unaware that any controversy exists. People continue to register as organ donors solely on the basis of good intentions: there is no attempt at any informed consent process to help them understand what their registration actually means.
Philosophically, most people understand death as the separation of our immaterial nature (variously described as the soul, spirit, or life force) from the material body. But because there is no device capable of detecting the departure of the immaterial, death has historically been recognized by the absence of breathing, the absence of pulse, and the passage of sufficient time to be sure that these signs of life would not return.
But the definition of death was changed in 1968 by thirteen men at Harvard Medical School with the publication of a landmark article, “A Definition of Irreversible Coma,” in the Journal of the American Medical Association. This article has no scientific references. There were no facts, studies, or evidence cited to explain why people in a deep coma (who had always previously been considered to be alive) were now somehow “dead.” The Harvard Committee justified their new idea of “brain death” by fiat, and on the basis of utility. They said that redefining people with severe neurological injury as being dead would have important social utilitarian benefits: it would free up ICU beds, and it would remove the controversy over using comatose people as organ donors.
But of course, neurologically injured people are not dead. There is no evidence that their spirits have departed. Neither are they biologically dead, as evidenced by their continuing vital signs (e.g. blood pressure and heart beat), ongoing metabolism, absorption of nutrients, and elimination of wastes. People with a brain death diagnosis have demonstrated the ability to grow, develop secondary sexual characteristics, heal wounds, fight infections, and even gestate healthy babies.
And, in the United States, “brain dead” people are not even legally dead. The legal definition of brain death in most US states is defined by the Uniform Determination of Death Act (UDDA). Under the UDDA, there are two ways of being legally dead. The first is the irreversible cessation of circulatory and respiratory functions. The second describes brain death: the irreversible cessation of all functions of the entire brain, including the brain stem. This is a “whole brain” death standard, requiring that there be no brain function whatsoever. But the way most doctors diagnose brain death, the American Academy of Neurology’s (AAN) brain death guideline, explicitly allows people with ongoing brain function to be declared dead. Thus, people who are legally still alive — because they still have some brain function — are having their human rights removed by being unjustly declared to be “dead.”
Because these neurologically injured people are not actually dead, there have been many cases of people with a brain death diagnosis continuing to live. Dr. Alan Shewmon, a pediatric neurologist, published a literature review in 1998 detailing 175 cases of “brain dead” people who continued to live after their diagnosis. All of these people were considered brain dead enough to have been offered the chance to become organ donors, but for various reasons their families decided to continue their care. One of these people, a four-year-old boy whose brain was injured by a severe case of meningitis, continued to live at home with a ventilator and a feeding tube under his mother’s care for twenty years. He ultimately died of a heart attack.
In 2007, Zack Dunlap suffered a severe traumatic brain injury when his head struck the pavement following an all-terrain vehicle accident. His injuries were severe, including multiple fractures and brain tissue exuding out of his ear canal. In fact, he was so unstable and severely injured that he was unable to safely undergo the usual tests for brain death prescribed by the AAN guideline. In such cases, the brain death protocol allows brain death to be declared on the basis of brain blood flow scans — which are known not to be 100% accurate. Dunlap’s brain blood flow scan was read by the radiologist as showing no flow, and he was pronounced brain dead. His parents assented to donating his organs because Zack had previously registered as an organ donor. Fortunately, Dunlap’s cousin didn’t think he was dead, and got Zack to move vigorously in response to pain — just as the helicopter was landing with the surgical team to harvest his organs. Because of his cousin’s timely intervention, Dunlap went on to make a full recovery: he is now married, has a daughter, and works a job.
But disturbingly, after his recovery, Dunlap related that he could hear every word as doctors told his parents that he was dead and could now become an organ donor:
“The next thing I remember was laying in the hospital bed, not being able to move, breathe – couldn’t do anything, on a ventilator. I heard someone say, ‘I’m sorry, he’s brain dead. He’s passing away.’ And there’s nothing I could do, just get mad. I couldn’t do anything – to sign – at all. I tried to scream, tried to move, just got extremely angry.”
This experience is especially frightening because many anesthesiologists do not use actual anesthetics for organ harvesting cases – just paralyzing drugs and medication to control the blood pressure. How many people have been awake but unable to prove they were alive before undergoing the horror of organ harvesting without proper anesthesia?
In 2013, Jahi McMath suffered severe postoperative bleeding and cardiac arrest following a complicated tonsillectomy. She was subsequently met and exceeded the AAN brain death criteria: she was declared brain dead by three different doctors, failed to breathe when her ventilator was withdrawn on three separate occasions, had four flat-line electroencephalograms (EEGs), and a “no flow” brain blood flow scan.
But her parents didn’t think Jahi was dead: she was warm, her skin was supple, and she was moving at times. She looked just like all the other children in the pediatric ICU who were getting better. With the help of Dr. Paul Byrne, Jahi was transferred from California to New Jersey, where she was “statutorily resurrected” – since New Jersey is the only US state with a religious exemption to a brain death diagnosis.
In New Jersey, Jahi improved. She went through puberty, began to menstruate (something not seen in corpses), and started responding to commands. Two neurologists who examined her found that she no longer met the criteria for brain death, but had recovered brain waves on her EEG and regained signs of consciousness. Jahi lived in an apartment in New Jersey with her family until 2018 when she died of liver failure. Her case proved that the AAN brain death guideline is unable to predict whether a brain injury is irreversible, and that even people with a severe brain injury have potential for healing.
Given the lack of evidence that brain dead people are actually dead, and the many cases of people surviving a brain death diagnosis, why are doctors continuing to use this questionable diagnosis? According to Dr. Eelco Wijdicks, a neurocritical care specialist at Mayo Clinic and an author of the 1995, 2010, and 2023 AAN brain death guidelines:
“…the diagnosis of brain death is driven by whether there is a transplantation programme or whether there are transplantation surgeons. I do not think brain death examination now, in practice, would have much if any meaning if it were not for the sake of transplantation.” (p.50)
Brain death is not death, but has been a utilitarian social construct to facilitate organ donation from the very beginning. Some people diagnosed as being “brain dead” have recovered brain function. Because neurologically injured people are not spiritually, biologically, or even legally dead, it is unjust to remove their human rights – and their organs – via the discredited brain death diagnosis.
Author Bio
Heidi Klessig MD is a retired anesthesiologist and pain management specialist who writes and speaks on the ethics of organ harvesting and transplantation. She is the author of “The Brain Death Fallacy” and her work may be found at respectforhumanlife.com.
