While the definition of death is being fiercely debated in the medical literature, the public has been kept in the dark.  Or is the public being intentionally misled?  As bioethicist David Rodriguez-Arias writes, "[t]he history of death determination in the context of organ donation can be described as an indoctrinating attempt to settle a moral controversy."

The definition of life as a body-soul union helps us when it comes to defining death.  Most religions of the world have some form of this belief.  It is different from the Renaissance view that we are our brains, brains who operate and direct their bodies like machines.  Death occurs when the spirit departs from the body, causing the body to lose the complex integration of all its systems, leading to the disintegration of those systems.  In biological terms, death is the loss of integration of the organism as a whole.  At death, the body stops maintaining itself with heart rate, breathing, blood pressure, temperature control, digestion, and waste management and becomes a corpse.

This definition of death prevailed until 1968, when the ad hoc committee of Harvard Medical School redefined death to include people in an "irreversible coma" as dead.  They did this by decree; there were no new studies, tests, or evidence that comatose people were actually dead.  The committee listed only pragmatic and utilitarian reasons for this new definition.  Its chairman, Dr. Beecher, said not only that it is a waste of resources to keep the hopelessly unconscious patient on the ventilator, but also that society cannot "continue to condone the discard of [their] tissues and organs ... when they could be used to restore the hopelessly ill but otherwise salvageable individual."

In 1981, the ad hoc committee's findings were signed into law as the Uniform Determination of Death Act.  This act, known as the UDDA, allowed people with beating hearts to be declared legally dead and taken for organ-harvesting while still biologically alive.

The current UDDA reads as follows:

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.

Since the UDDA was passed into law, much debate has taken place as to whether the standards have been used to bypass the Dead Donor Rule, which states that organ donors cannot be killed to obtain their organs.  Doctors Miller, Truog, and Brock wrote in the Journal of Medicine and Philosophy:

Nevertheless, scholars have argued cogently that donors of vital organs, including those diagnosed as 'brain dead' and those declared dead according to cardiopulmonary criteria, are not in fact dead at the time that vital organs are being procured[.] ... This leaves the current practice of organ donation based on the 'moral fiction' that donors are dead when vital organs are procured.

"In response to a number of recent lawsuits related to brain death determination," the American Academy of Neurology has proposed a revision to the UDDA, the RUDDA.  The revisions to the UDDA are not inconsequential.  The first change would seek to replace the term irreversible in the standards with the term permanent.  At first glance, this may not seem like much of a change, but the definitions make a difference.  "Irreversible" is commonly held to mean "not capable of being reversed."  The term permanent is being offered as meaning that "no attempt will be made to reverse the situation."  So, because doctors are not going to attempt to correct the patient's problem, it now becomes "permanent."  Dr. Ari Joffe clarifies this for us: "[i]s a drowning man dead because no one will swim out to save him?  Or is he merely going to die?"  The term "permanent" is being inserted to allow patients whose prognosis is death to be called dead.

The second change would narrow down the definition of brain death from "the entire brain" to just selected functions of the brain stem that can easily be tested at the bedside.  This change recognizes that current practice does not test all functions of the entire brain, since most people diagnosed as brain-dead still have a functioning hypothalamus, a part of the brain.  Many also still have electrical activity on electroencephalogram (EEG), which is one of the reasons that EEG testing as a requirement for a brain death diagnosis was dropped in the 1970s.

The third change would standardize the brainstem testing protocol.  The current UDDA states only that "[a] determination of death must be made in accordance with accepted medical standards."  Since the standard isn't defined, every medical center decides for itself which brainstem tests are performed.  This has aided lawyers suing on behalf of patients declared as brain-dead by introducing doubt as to the validity of the brain death testing at one center compared to another.

The fourth change would eliminate the necessity for obtaining consent prior to testing for brain death.  The apnea test for brain death disconnects patients from their ventilator for 6–8 minutes to see if they will breathe independently.  This test has absolutely no value for the brain-injured patient and can only cause harm to a patient not yet declared brain-dead.  When the ventilator is disconnected, rising levels of carbon dioxide in the blood cause intracranial pressure to rise, further damaging the brain.  It is like making a heart attack patient with chest pain run on a treadmill.  The test can only make the patient worse and only serves the interests of the transplant industry.

The Uniform Law Commission is currently studying these revisions to the UDDA and intends to report its conclusions by 2023.  Clearly, the proposed revisions favor the interests of the transplant industry over the interests of patients and their families.

So what is an ethical definition of death?  A return to the biological definition would be a good place to start.  An individual who has sustained irreversible cessation of circulatory and respiratory functions leading to loss of the integration of the organism as a whole is dead.  This definition is consistent with the reality of biological death and sound ethical principles.

I realize that returning to this definition will allow for living donation only of one of a paired set of organs, a lobe of lobular organs, or the donation of tissues from corpses.  People often ask me, "But what about patients who need a heart transplant?" The tragedy of people dying in need of an organ transplant is heart-breaking.  But so is the tragedy of living people being killed by organ-harvesting under the UDDA.

I think that if we hadn't been pouring all our research and monetary efforts into treating people with unethical transplants, science likely would have come up with safe, ethical solutions to these problems by now.  And often these transplants don't turn out to be a real solution anyway.  According to the 2020 Milliman Report, transplant outcomes are worsening over time in the current unethical system, not improving.

I maintain that for the current transplant system, the ends don't justify the means.  Ethicist Dr. Michael Nair-Collins writes, "Appealing to the good consequences of organ transplantation in an attempt to justify the lack of transparency, if not outright obfuscation on which the transplantation enterprise rests, is not a very compelling argument."

Dr. Allen Shewmon and 107 other experts in medicine, bioethics, philosophy, and law have agreed that whereas the UDDA needs to be revised, the RUDDA is not the way to do it.  When there is so much controversy on this issue among academics, the public deserves to be informed before another standard is imposed upon them by force of law.  It is urgent that the public be made aware of the current unethical definition of death as well as its proposed revisions.  Besides not signing a donor card, and documenting your refusal to donate (a downloadable refusal card may be found here), you can also contact the Uniform Law Commission here with your concerns.  One of the most helpful things you can do is continue to share this information.  Tell new young drivers not to sign donor cards, help loved ones make ethical end-of-life decisions, and raise public awareness simply by talking with your friends.  We all deserve an ethical definition of death.

Dr. Heidi Klessig is a retired anesthesiologist and pain management specialist who writes and speaks about organ donation.  Her work may be found at respectforhumanlife.com.

Image via Needpix.