Death certificate is on table. Paperwork after death of relative concept

Bioethics Forum Essay

Revising the Legal Standard for Determining Death

In recent years, court cases and scholarly articles have increasingly highlighted discrepancies between the legal definition of death in the United States and the medical diagnostic standards for determining brain death. It has become clear to many that the 40-year-old Uniform Determination of Death Act, the legal standard, should be updated.

The development of intensive care medicine during the late 1950s gave rise to the perplexing phenomenon of patients with profound brain damage persisting in a coma with the support of mechanical ventilators and other medical interventions.  Might these patients legitimately be determined to be dead by virtue of an entirely nonfunctional brain? At that time, death was defined by the cessation of circulatory and respiratory functions.  By the early 1980s a consensus emerged in the U.S. in support of determination of death according to neurological criteria—that patients diagnosed as “brain dead” are biologically and legally dead.  The 1981 Uniform Determination of Death Act (UDDA) became the legal standard in the U.S.  The UDDA stipulates that “An individual who has sustained either 1) irreversible cessation of circulatory or 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.”  However, significantly, approximately half of patients diagnosed as brain dead maintain functioning of the hypothalamus—a part of the brain—as manifested by control of the concentration of urine formed by the kidneys. This is a serious problem, since the UDDA explicitly defers to the medical profession to set the diagnostic standards, yet the application of those long-established standards in many cases is not consistent with the “irreversible cessation of all functions of the entire brain.”

Last fall the Uniform Law Commission appointed a study committee to recommend whether a revision should be undertaken. One proposed revision in particular has received much attention, given the prominence and influence of its authors– Ariane Lewis, Richard Bonnie, and Thaddeus Pope. Its novelties are essentially threefold: 1) to declare explicitly the American Academy of Neurology’s diagnostic guidelines for adults and the joint society pediatric guidelines (and future revisions thereof) as the medical standard, 2) to exclude hypothalamic function from the category of “brain function,” and 3) to declare that the neurologic diagnostic protocol (including an apnea test to determine whether patients are capable of breathing spontaneously) can be undertaken without consent and over patients’ and proxies’ objections.

One-hundred-seven experts from a variety of disciplines, including medicine, law, bioethics, philosophy, and anthropology, have come together in a recently published statement agreeing that the UDDA indeed stands in need of revision but that the RUDDA is not the way to do it. The endorsers differ radically among themselves regarding the concept of death, the nature of human persons, the fundamental principles of bioethics, and the optimal direction of revision, but they are united in opposition to the RUDDA. The statement was published by the Journal of Medicine and Philosophy and remains available through open access until 11/13/21 at this link: https://academic.oup.com/jmp/advance-article-abstract/doi/10.1093/jmp/jhab014/6275576.

The reasons for rejecting each of the three main points of the RUDDA are discussed in detail and thoroughly referenced. In short, 1) the diagnostic guidelines have an unknown, but nonnegligible, risk of declaring a living person dead, 2) the RUDDA would arbitrarily declare certain manifestations of biological life, including some brain functions, to be irrelevant to the question of life versus death, and 3) the apnea test offers no benefit to the patient, carries significant risk (including precipitating brain death if the patient is not already brain dead), does not reliably accomplish its intended purpose to test for respiratory drive, and is not even absolutely required for a diagnosis of brain death according to the official protocols. To authorize such a test to be performed without consent and even over patients’ and proxies’ objections would constitute an unethical violation of bodily integrity.

Various options are possible for revising both the statutory definition and the medical determination of death to obviate inconsistencies between diagnostic practice and the law.  One option that deserves serious consideration, we believe, is to abandon the determination of death according to neurological criteria and return to the traditional, scientifically sound, legal standard that death occurs when all three major organ systems (circulatory, respiratory, and neurological) have permanently ceased to function.  Under existing U.S. law, this option would put an end to heart-beating organ procurement from “brain dead” donors; however, current practices of organ donation after circulatory determination of death, with valid consent, would still permit successful procurement of viable vital organs from donors in an irreversible coma from whom life support is to be withdrawn. In any case, a proper definition and determination of death should be based on sound philosophical and biological principles, not on whether it facilitates organ transplantation.

D. Alan Shewmon, MD, is an emeritus professor of pediatrics and neurology at the David Geffen School of Medicine at UCLA. Franklin G. Miller, PhD, is a professor of medical ethics in medicine at Weill Cornell Medical School and a Hastings Center fellow.

Read More Like This

Hastings Bioethics Forum essays are the opinions of the authors, not of The Hastings Center.

  1. Brain death implies that there is no brain activity. However, this post states hypothalamus preserves its functions even after the proclamation of brain death. Indeed, this violates the definition of brain death as it requires all brain functions to be irreversibly ceased. I disagree with the Uniform Law Commission to exclude the hypothalamus from brain functions. This sets an unacceptable precedent for picking the important vs. non-important functions of the brain in determining death. Hypothalamus has many functions, one of which is hormone control, thus making it an essential part of the body. The whole-brain determination of death indeed needs to be abandoned.

    Currently, patients diagnosed with brain-death, do not fall under the legal requirement to be dead since one of the brain functions is still operating. Thus, the concern arises that hospitals violate the dead donor rule by performing organ procurement on patients with preserved hypothalamus function.

    Additionally, abandoning the whole-brain death criterion will stop disputes about a religious exemption. The recent cases of Taquisha McKitty and Netanel Ouanounou have been devastating for communities in Ontario. Moreover, abandoning the whole-brain death determination will allow pursuing a definition that can be implemented on a federal rather than the state level. The definition for death should be the same across all states because it is absurd that the same person can be considered alive in New Jersey and dead in New York.

  2. Hastings Center Forum
    Revising the Legal Standard for Determining Death by D. Alan Shewmon and Franklin G. Miller

    Revising the Legal Standard for Determining Death – The Hastings Center

    Concerning the revising of the Uniform Determination of Death Act, Neurological death, if defined as the cessation of all neurological activity, cannot be assented to as an absolute measure of a person’s incapacity for life if a section of the brain remains functioning at full or even partial capacity. This article and others have stated that the Hypothalamus has been demonstrated to stay functioning in many instances even though the rest of the brain is otherwise no longer operational, and the patients are ultimately pronounced dead regardless of this fact. Because the production of urine is essential to a human’s ability to remain alive, this raises a serious question as to what defines neurological death. To place the current situation of whole brain death into an analogy using a car, this situation is, fundamentally, that if a singular, functioning part which is essential for the operation of said vehicle and is a component in a more significant mechanism that is otherwise not-functioning, is mandatory for operation and is irreplaceable, is that one functioning part enough to determine if the car be salvaged or left to rust?

    This definition of whole-brain death conveyed in this fashion highlights an absurdity for the potentially apparent reason that humans are not machines. They cannot be reduced to such a state without incredible consequences, morally, ethically, and legally. A car can be judged as not worth the investment. If a vehicle has only one functioning mandatory component but all the rest are inoperable, then the car can and probably should be disposed of. This is a question of objectification and is what the authors are alluding to with their commentary on RUDDA. By declaring patients dead because some of their brain activity is deemed inconsequential, then those implementing RUDDA are essentially objectifying aspects of a person’s being alive. Death operates on an all-or-nothing principle, which means that a person must be, given the circumstances, permanently unable to return to normal behaviors that constitute a person being alive (For the sake of this comment, those will be defined as survival drives: food, water, respiration, etc.). Therefore, glossing over certain neurological functions cannot be allowed to occur on any level during the analysis of a potentially dead person. There must be a clear, absolute, and scientifically supported definition of what it means to be dead that is congruent with the technology of the time. Failing to meet said standards leads only to the objectification of the patient.

    It is true that humanity currently lacks mastery of all human biological and medicinal processes; if this were not the case, the definition of death would become inconsequential as humanity could fix any physiological issue a person might possess. Regardless, this limitation underscores the urgency for re-evaluating our understanding of death and its legal definitions as technology continues to advance as well as upholding said definition. It is with this notion that a definition of death defined as the Complete and irreversible Cardiopulmonary and Neurological failure of a person is the best way to maintain the humanity of a person either in or approaching such a state. Failure to change and adapt the definition of death will not only continue to compound philosophical and biological questions of what death is but also legal questions surrounding the ending of a person’s life prematurely and the objectification that occurs by doing so.

    Bibliography:

    Lewis, A. (2022). The Uniform Determination of Death Act is being revised. Neurocritical Care, 36(2), 335-338.

    Svenaeus, F. (2023, April). The phenomenology of objectification in and through medical practice and technology development. In The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine (Vol. 48, No. 2, pp. 141-150). US: Oxford University Press.

Leave a Reply

Your email address will not be published. Required fields are marked *