In 2015, a University of Nevada-Reno student, Aden Hailu, suffered an unexpected brain injury during surgery and was declared brain dead. Her father opposed the declaration, and a court battle followed. The hospital argued Hailu fulfilled the requirements of the American Academy of Neurology (AAN) brain death guidelines. Ultimately, the case was tried by the Nevada Supreme Court, which ruled unanimously that the AAN brain death guidelines did not meet the legal definition of brain death under the Uniform Determination of Death Act (UDDA) because the recommendations do not test all the functions of the entire brain.
Under the UDDA, death is defined in one of two ways:
An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.
Death has been diagnosed for thousands of years by noting the irreversible cessation of circulatory-respiratory function. The idea of brain death is newer, but from its inception has been an idea lacking any scientific foundation. Since the brain death concept is flawed, no diagnostic tests or guidelines for brain death can ever have any basis in scientific fact.
Background for the UDDA
In 1968, a committee at Harvard Medical School published “A Definition of Irreversible Coma,” which argued that non-responsive people in a coma could be dead. There were no new tests, studies, or evidence that people in a coma, who had previously always been viewed as alive, were now dead. The only rationale given was based on utility—the diagnosis would free up beds in intensive care units, facilitate organ transplantation, and prevent lawsuits against physicians.
After 1968, a few states adopted a brain death standard. Then, in 1981, the President’s Commission for the Study of Ethical Problems in Medicine published Defining Death, which formed the foundation for brain death laws in the United States (US). The President’s Commission asserted that the brain was the “master integrator” of the body and that following the cessation of brain activity, death would quickly follow. The Commission also stated that medical technologies, like a ventilator, “masked” a death that had already occurred. Essentially, they thought that air pushed into the body from a ventilator would make a corpse look alive.
The findings of the President’s Commission were written into a model law by the Uniform Law Commission (ULC) as the UDDA. Every state has adopted the UDDA as cited above in some form, and it remains the legal definition of death in the US today.
Challenges to the UDDA
Aside from the apparent prima facie challenge to the UDDA in light of its language, there are also empirical arguments based on “accepted medical standards” that can be made. How does one define irreversibility? There are numerous documented cases of people who were declared to have “irreversible cessation” of the brain and who reversed their terminal condition and even fully recovered. What about an irreversibly ceased heart and lungs that are cut out of one person and transplanted into others and restarted? The noun "irreversibility” mentions a qualitative state of being that cannot be quantified by “accepted medical standards,” especially when people declared dead by the neurological criterion still have a beating heart and aerating lungs.
In 1998, neurologist Dr. D. Alan Shewmon documented 175 cases of “brain dead” people who continued living after they were declared brain dead under the UDDA. One mentally disabled person lived for more than twenty years! Shewmon pointed out that there could have been more people like this, except for the fact that brain death is a self-fulfilling prophecy of de facto death. Most people diagnosed dead under the neurological standard of the UDDA become organ donors or have medical support withdrawn too soon. In both instances, it is either the removal of vital organs or the withdrawal of medical treatment that results in death, not the “irreversible cessation of all functions of the entire brain, including the brain stem.”
Another neurologist, Dr. Cicero Coimbra, first described a condition referred to as Global Ischemic Penumbra (GIP) in 1999, one that is common in people who experience cardiovascular accidents or strokes. Like every other organ in the body, the brain shuts down its function when blood flow is reduced to conserve energy. The brain’s neurological functioning is reduced at 70 percent of normal blood flow. At 50 percent, electrical activity in the brain cannot be detected. However, brain tissue damage does not begin until blood flow drops below 20 percent and only after several hours, as Coimbra described in his research.
The brain’s blood flow is between 20 and 50 percent normal when GIP is present. During this interval, the brain will not respond to a neurological exam, no electrical activity will be detected, and a radioisotope scan will not reveal intracranial blood flow. In short, the person in GIP will meet neurological criteria for brain death and can be defined as dead. Nevertheless, this individual has not reached the point of destruction of neurological tissue or “irreversible cessation of all functions of the entire brain, including the brain stem,” which the UDDA requires. Over time, with continuing care, the brain-injured disabled person may improve.
Does medical technology, like a ventilator and various other medical interventions/medicine, keep a brain-dead corpse alive or mask death? The answer is no. Dr. Doyen Nguyen, a brain-death expert, points out that life and death are mutually exclusive. Medical technology can only sustain life, not produce it. In fact, people who meet the criteria for brain death under the UDDA still have a beating heart, exchange of oxygen and carbon dioxide (respiration/circulation), digestion, waste elimination, wound healing, and the ability to deliver healthy babies. Medical technology does not mask death; instead, it keeps a living person with a brain injury alive.
Cases in which people who were declared brain dead have raised even more challenges to the UDDA neurological standard. In 2013, Jahi McMath was declared legally dead in California by the brain-death standard and was moved to New Jersey. With nursing care, a feeding tube, and a ventilator, she lived until 2018. According to those declaring her dead, her brain was supposed to liquefy in her skull, but that did not happen. Instead, she went through puberty and began to menstruate, which requires neuroendocrine brain and body integration. This communication between the brain and body is mediated through a gland deep within the brain called the hypothalamus.
The National Catholic Bioethics Center (NCBC), formerly a staunch advocate of brain death, issued a landmark position statement on April 11, 2024, that cited research indicating that between 50-84 percent of the people declared brain dead still have a functioning hypothalamus. What is the hypothalamus? The NCBC position statement provides the answer:
The hypothalamus can be understood as a kind of “smart” coordinating center in the brain which is involved in regulating temperature, salt-water balance, sex drive, and sleep. Recent studies show that it may play a role in phenomenal awareness and pain detection. Hypothalamic functioning shows that not all functions of the entire brain have ceased, as stipulated by the UDDA. Consequently, patients with confirmed hypothalamic function should not be diagnosed as brain dead, nor treated as dead, for the purpose of organ procurement.
The hypothalamus, a critical structure among many inside the brain, continues to function in up to 84 percent of the people declared brain dead!
It is also worth adding that due to the phenomenon of GIP, even those people who lack hypothalamic function may still have viable hypothalamic tissue, and these people may also recover. The fact of GIP means that we can never diagnose brain death/hypothalamic death with certainty. Jahi McMath is a case in point. Her doctor wrote in her chart that she had “hypothalamic death,” and he was wrong. The legal standard of “irreversible cessation of all functions of the entire brain, including the brain stem” is never met in brain-injured people. In fact, all “brain-dead” people with the ability to excrete waste, demonstrate neuroendocrine function, and fight off infections have brains that continue to function.
In light of Jahi’s hypothalamic functioning and recovery period with adequate medical care, it is unsurprising that she eventually responded appropriately to commands, and the radioisotope imaging scans of her brain improved. She may have improved more by applying immediate neuroprotective strategies, nutrition, and compassionate care. Sadly, disabled Jahi was neglected and discriminated against by Children’s Hospital Oakland, and their lack of ongoing care was harmful to her. Jahi was a disabled teen with a head injury in a minimally conscious state (MCI) when she died from liver failure five years later.
Even with the most precise state-of-the-art medical testing, short of the observed decapitated head or crushed skull, it is not possible to determine if “all functions of the entire brain including the brain stem” have reached a point of “irreversible cessation.” Nevertheless, the UDDA requires the “all functions” standard to be met for legal death, and that puts into play the documented verification of all and every “accepted medical standard” to determine “irreversible cessation” of all “functions of the entire brain, including the brain stem.”
Litigation Strategies
On March 26, 2024, Shewmon published in the medical journal Neurology, “The Fundamental Concept of Death—Controversies and Clinical Relevance.” The article distills Shewmon’s methodical analysis and honest reflection on “brain death” for nearly a half-century, both clinically and academically. As noted above, questions about the line between life and death have become arbitrary, so deaths declared under the UDDA neurological standard should be litigated to make the public aware of this legal fiction, egregious assault on mentally disabled people, and to motivate legislators to make policy changes.
Shewmon mentions the three views of death that prevail today in the US: (1) biological (cessation of the integrative unity of the organism as a whole); (2) psychological (cessation of the person, equated with a self-conscious mind); and (3) the vital work theory (a view of death defined by the ability of a person to interact with the surrounding environment).
The article digs deeper into each of these views. Shewmon contends that brain death does not correspond to the valid biological concept of death as “the organism as a whole.” More than half of the neurologists representing the AAN agree, so they have moved on to the second view, which could include people with a variety of brain injuries. For positions two and three, these people are viewed as “good as dead.” However, they have not experienced “irreversible cessation of all functions of the entire brain, including the brain stem.” Thus, they do not meet the UDDA standard of legal death.
The burden of proof rests on physicians and hospitals to ensure the UDDA neurological standard is met before declaring brain death. Along with basic neurological testing, there must also be testing to indicate the absence of hypothalamic function, documented time to rule out GIP, medical treatment attempts on record to reduce brain swelling, and the employment of best-practice neuroprotection. There must also be objective evidence to verify that brain-mediated bodily functions such as regulating homeostasis, digestion, excretion of waste products, and immunological processes have ceased.
Testing, such as the Apnea Test, may exacerbate brain swelling, resulting in further injury to the brain, and it may cause death. This “test,” often used as a shortcut to demonstrate the brain will not maintain cardiopulmonary function after the removal of a ventilator, is a diagnostic procedure with significant risks that serve the interests of the medical institution, not the brain-injured person. Under the 1991 Patient Self Determination Act (PSDA), all medical procedures with risks require informed consent before they can be performed. Were the risks and benefits of the Apnea Test explained to a healthcare proxy and documented?
Perhaps you are aware of someone who died due to the hasty removal of a ventilator or had their organs removed under the UDDA neurological standard. Medical institutions and physicians need to prove these brain-injured people have reached the point of “irreversible cessation of all functions of the entire brain, including the brain stem,” according to “accepted medical standards.” Documentation must support that all brain functions have irreversibly ceased, which is impossible to prove. The actual cause of death for these brain-injured people is the withdrawal of medical treatment or the removal of organs; this may be grounds for a wrongful death lawsuit due to medical malpractice.
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