Until there were ventilators, and until organ transplantation became a therapeutic reality, the designation of death was based solely on cardio-respiratory criteria. The determination was essentially straightforward. If a person was no longer breathing, incapable of doing so and had no cardiac function as evidenced by blood pressure, pulse and EKG, they were dead.

 

Organ transplantation was first successfully performed in 1954. As early as 1968, an ad hoc committee at Harvard Medical School defined “irreversible coma” primarily as a means to obtain more usable organs for transplantation. By the 1980s, as advances in prevention and treatment of rejection led to more successful transplants, demand for organs increased.

 

Over the years, various medical bodies authored guidelines similar to Harvard’s, with new elements, and by 1981 these congealed and became widely accepted under the rubric of the Uniform Determination of Death Act (UDDA).

 

The definition for determination of death currently is: 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.

 

The further elaboration of these rules includes exclusion of hypothermia, exclusion of obvious reversible etiologies (such as metabolic or pharmaceutical factors,) and presence of a known reason for the coma. Determination of brainstem death, per se, includes individual assessment of cranial nerve function (functionally located in the brainstem), and it often includes a brain perfusion study of some variety and an apnea test.

 

While widely accepted in theory, there are several issues with the current process. The pressing demand for more transplantable organs confounds the process. Also, despite the claim that the whole brain must irreversibly be non-functioning, neuroendocrine function is not being assessed. Entire brain function would by definition include the hypothalamus, and currently there is no consistent, standardized, accurate way to gauge hypothalamic function; consequently, it is not consistently being used in assessing brain death.

 

The Uniform Law Commission (ULC, also known as the National Conference of Commissioners on Uniform State Laws), established in 1892, provides states with non-partisan legislation that brings clarity and stability to critical areas of state law.

 

ULC members are practicing lawyers, judges, legislators, legislative staff and law professors who have been appointed by state and territorial governments to research, draft and promote enactment of uniform state laws in areas of state law where uniformity is desirable and practical.

 

• ULC strengthens the federal system by providing rules and procedures that are consistent from state to state but also reflect the diverse experience of the states.
• ULC keeps state law up to date by addressing important and timely legal issues.
• ULC’s efforts reduce the need for individuals and businesses to deal with different laws as they move and do business in different states.
• ULC’s deliberative and uniquely open drafting process draws on the expertise of commissioners, but it also utilizes input from legal experts, advisors and observers representing the views of other legal organizations or interests that will be subject to the proposed laws.

 

A new committee of the Uniform Law Commission is meeting, and it is scheduled to provide revisions to UDDA criteria by July 2023. One proposal put forth by the American Academy of Neurology (AAN) is likely to form the core of ULC’s recommendations. Notably, even among the selected experts on the AAN review committee, there is some disagreement. They use the terminology of neurorespiratory criteria, and they define brain death as loss of: (a) the capacity for consciousness; (b) the ability to breathe spontaneously; and (c) brainstem reflexes. While on its surface this sounds much like the old criteria, there are a few key differences, which leads to several questions raised by this proposal.

 

• Many people are not convinced of the morality of brain death in general. There are currently no opt-out clauses for families or healthcare professionals who find this morally objectionable. The AAN statement does not address this concern. Should we require consent from families to employ brain death criteria?
• Should there be religious or moral exceptions? Currently New Jersey—alone among the states—allows for this.
• What are “accepted medical standards?” These standards include treatment that is accepted by medical experts as a proper treatment for a certain type of disease, which is widely used by healthcare professionals. These seem to vary by geography and over time. Of concern is that standards for assisted suicide have radically changed over time and are still considered medically accepted. If no further parameters are instituted in this revision of the UDDA proposal, the same thing will most likely occur here as well.
• How do we deal with hard cases like Jahi McMath? After being declared brain dead in California, she was flown to New Jersey, where she continued to grow, develop, and proceed through puberty with respiratory support. Was she really dead?
• The apnea test, widely used in determining death, carries a risk of precipitating death, and it is often included as part of the generally accepted medical standards. A flatline EEG was considered part of these standards for many years, but that has since been abandoned. Should we require consent from family to perform apnea tests?
• The physiology and brain development for neonates, children and adolescents differs greatly from adults. This issue is not dealt with in the new proposal.

 

The new proposal from the AAN is a start, but it raises a variety of questions. It is time to step back, look over all the issues in a broader, more transparent way and see if we can’t come up with better guidelines. If these proposed guidelines, with the questions they raise, are accepted by the Uniform Law Commission, they will likely be widely accepted as the new reality. We can and should do better. It’s time to put on the brakes and take a longer look.