The law that redefined death in 1981, referred to as the Uniform Determination of Death Act (UDDA), is being revised. The UDDA states that death by neurologic criteria must consist of "irreversible cessation of all functions of the entire brain, including the brainstem." However, in actual practice, doctors examine only the brainstem. The result is that people are being declared dead even though some still have detectable brainwaves, and others still have a part of the brain that functions, the hypothalamus. Lawyers have caught on, pointing out in lawsuits that the whole brain standard was not met for their clients. As a result, the Uniform Law Commission (ULC) is working on updates to the UDDA based on proposals from the American Academy of Neurology (AAN).
In the interest of preventing lawsuits, the AAN is asking that the neurologic criteria of death be loosened even further and standardized across the United States. The revised UDDA is referred to as the RUDDA. Below is the proposal drafted at the February session of the ULC, which will be debated this summer:
Section § 1. [Determination of Death]
An individual who has sustained either (a) permanent cessation of circulatory and respiratory functions or; (b) permanent coma, permanent cessation of spontaneous respiratory functions, and permanent loss of brainstem reflexes, is dead. A determination of death must be made in accordance with accepted medical standards.
Notice that the new neurological standard under (b) does not use the term "irreversible," nor does it include the loss of whole-brain function. The term "permanent" is being defined to mean that physicians do not intend to act to reverse the patient's condition. Thus, people in a coma whose prognosis is death will be declared dead under this new standard. An unresponsive person with a beating heart on a ventilator is not well, but he is certainly not dead! The Catholic Medical Association and the Christian Medical and Dental Association have written letters to the ULC protesting these changes.
In addition, the AAN proposes that there be no requirement for informed consent before initiating brainstem-reflex testing. One of the tests is called the apnea test. During this exam, the patient is removed from the ventilator for 8–10 minutes, attempts to breathe are monitored, and carbon dioxide in the blood is measured. This test has absolutely no benefit for the patient. It can only cause harm, as rising levels of carbon dioxide in the bloodstream cause an increase in intracranial pressure, which is hugely detrimental for a brain-injured patient. The idea that there will be no informed consent requirement for this potentially harmful exam violates the ethical principles of autonomy, justice, beneficence, and non-maleficence.
The UDDA has been controversial since its inception in 1981, and experts on both sides of the issue admit that it has serious flaws. Most notably, organ donors declared dead under its criteria are, in fact, still alive. The heart beats, lungs exchange oxygen and carbon dioxide, kidneys produce urine, livers remove toxins, children go through puberty, pregnant women gestate babies, hair grows, and in many cases the brain and body communicate to regulate life-sustaining functions. Organ donors declared dead under the UDDA do not meet the Dead Donor Rule (DDR) and are exploited for body parts.
In 2018, Harvard Medical School hosted "Defining Death." At this watershed medical conference about "organ transplantation and the 50-year legacy of the Harvard report on brain death," the experts determined that the UDDA was not true to a biological definition of death and the DDR was violated as a result.
These revelations about UDDA and DDR inconsistencies are not new. In the 2008 affirmation of the UDDA, "Controversies in the Determination of Death: A White Paper by the President's Council on Bioethics," the chairman, Edmund D. Pellegrino, M.D., pointed this out. "Ideally," he wrote in his minority dissent, "a full definition would link the concept of life (or death) with its clinical manifestations as closely as possible," and the UDDA does not satisfy these objective findings. He stated: "The only indisputable signs of death are those we have known since antiquity, i.e., loss of sentience, heartbeat, and breathing; mottling and coldness of skin; muscular rigidity; and eventual putrefaction as the result of generalized autolysis of body cells."
ULC commissioner James Bopp, National Right to Life Committee, argues that people declared dead under the neurologic criterion of the UDDA are entitled to the same protections as unborn babies. He states these are an "identical debate, just a different context." Thus, those who vigorously defend life as starting at conception (i.e., at the level of cells) are inconsistent when they accept the UDDA whole-brain definition of death.
In May of 2021, Alan Shewmon, M.D. and 107 experts in medicine, bioethics, philosophy, and law recommended that the UDDA be revised but stated that the RUDDA was not the way to do it. Shewmon has documented 175 cases of people meeting the neurological standard for death who continued to live on, some for over twenty years. He has also reported and testified in court on behalf of "brain-dead" children, most notably Jahi McMath. Although legally dead in California, Jahi experienced puberty, which requires brain and body interaction, and even started to recover before she received her second death certificate five years later. Many have even recovered and have gone on to live normal lives after a diagnosis of "irreversible cessation of all functions of the entire brain, including the brain stem."
The ULC solicits expert opinions and suggestions on the proposed changes to the UDDA. We believe that the changes being proposed to the UDDA will only benefit transplant stakeholders at the expense of the rights of patients and families. Declaring a comatose, brain-injured patient dead to be able to harvest his organs is an issue of concern to every American, especially since roughly 170 million people are registered as organ donors (see "Cherish Your Life! DON'T Be a Registered Organ Donor"). Shewmon put it best: "Just as cigarette ads are required to contain a footnote warning of health risks, ads promoting organ donation should contain a footnote along these lines: 'Warning: it remains controversial whether you will actually be dead at the time of the removal of your organs.'" The public deserve a voice at the table before a law is passed that takes away their right to life.
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