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.