As a neurologist who specializes in critical care, I believe we need a clearer, more consistent legal definition of death. The Uniform Determination of Death Act (UDDA), the legal standard for death throughout the U.S., has deficiencies, particularly with respect to the description of death by neurologic criteria, aka brain death. This causes confusion and moral distress for both families and health care teams and can lead to protracted lawsuits about whether a person is alive or dead.
Historically, doctors declared death when a person was not breathing and had no heartbeat or palpable pulse. This occasionally caused controversy because they declared death prematurely. Declaring death became even more complicated as the 20th century progressed. Cardiopulmonary resuscitation (CPR) and ventilators allowed vital functions to continue in people who previously would have died. Some of these people were comatose as a result of catastrophic brain injuries and would never be able to breathe on their own because of damage to the lowest part of the brain stem.
In 1968 a group chaired by anesthesiologist Henry Beecher and composed of experts in neurology, physiology, biochemistry, law and social ethics convened at Harvard University to examine the definition of “irreversible coma,” which subsequently became known as “brain death/death by neurologic criteria.” They noted that the characteristics of irreversible coma—a permanently nonfunctioning brain—included unreceptivity and unresponsiveness, no movements or spontaneous breathing (apnea) and no brain stem reflexes.
On supporting science journalism
If you're enjoying this article, consider supporting our award-winning journalism by subscribing. By purchasing a subscription you are helping to ensure the future of impactful stories about the discoveries and ideas shaping our world today.
The group believed that this definition of death would not require statutory changes because the law treated the question of death as a matter to be determined by clinicians, whom, they felt, would accept these standards. But legal disputes prompted President Jimmy Carter and Congress to ask a commission to develop legal guidance on the definition of death. The commission collaborated with members of the American Bar Association, the American Medical Association and the National Conference of Commissioners on Uniform State Laws, in addition to philosophers, religious officials and ethicists. They produced the UDDA, a recommended statute, in 1981 with the goal that all states would adopt it. The UDDA indicates that death can be declared, in accordance with accepted medical standards, on one of two grounds: irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem. Every state accepted the UDDA, in language or in spirit.
Over the past decade, however, highly publicized lawsuits and debates amongst clinicians, ethicists, philosophers and lawyers have shown weaknesses of the UDDA, which I believe we need to address. For example, the UDDA does not provide guidance about whether clinicians need to obtain consent from a person’s family prior to a brain death evaluation or how to handle objections. Families sometimes ask clinicians not to perform a brain death evaluation or to continue ventilator support after a brain death declaration. They may refuse to accept that brain death is death according to their social, cultural, philosophical or religious beliefs. This creates challenges for clinicians and hospitals because most states provide no legal guidance about whether to perform the evaluation and subsequently discontinue ventilator support after a declaration of brain death in spite of objections or to provide families the ability to opt out. California and New York State vaguely require reasonable accommodation of objections, and Illinois notes that religious beliefs should be taken into consideration when determining time of death. New Jersey law uniquely states that if a patient is known to have religious beliefs that oppose a declaration of brain death, ventilator support and all other medical interventions should be continued until their heart stops beating. All this variation adds confusion. We need a consistent national approach to the declaration of death.
Additionally, some experts—such as Michael Nair-Collins, an associate professor of behavioral sciences and social medicine at Florida State University College of Medicine—argue that the medical brain death guidelines do not fit the UDDA’s requirement for “irreversible cessation of all functions of the entire brain, including the brainstem.” Nair-Collins believes that to be in accordance with the UDDA, the brain death evaluation should require assessment for loss of hormonal secretion from the pituitary gland and hypothalamus. No country requires this, however.
In 2021 the Uniform Law Commission (ULC) convened a drafting committee to discuss revisions to the UDDA. The purpose of the ULC is to strengthen the federal system by generating consistent rules across states. The commissioners invited participation from more than 100 people with relevant expertise, including representatives from medical, organ procurement and advocacy organizations. Unfortunately, although there was widespread support for revising the UDDA, in the fall of 2023 the commission paused the drafting committee’s work indefinitely because of concerns that diverse views about death would prevent the revisions from being widely adopted.
Like most of my medical colleagues who sent comments to the ULC, I favor changing the UDDA to align the law with clinical practice. For example, instead of the controversial phrase “cessation of all functions of the entire brain, including the brainstem,” the law should state that brain death declaration requires coma, loss of brain stem reflexes and inability to breathe spontaneously in the setting of an adequate stimulus.
There will always be varying religious, philosophical, ethical and cultural perspectives on death, but society needs a clear legal standard that is consistent with medical practice throughout the country. Given that the ULC was not able to accomplish this, I believe this may need to be addressed on a national level.
The views expressed in this article are those of the author and do not represent any affiliated organization.
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.