What is death? Is it the loss of heartbeat? Loss of knowledge? Maybe it is somewhere in between. We have seen thousands of depictions of life and death in movies, novels, and our own lives – but how do we actually define death, and who gets to decide? The line between life and death is thin, not only biologically, but socially and legally. It can be difficult to apply the same standard across disciplines for such a controversial and ethically challenging topic. Lawyers, ethicists, and physicians are at constant odds, debating the implications of a hard and fast definition of death. Due to the ever-evolving science behind brain death and polarized public opinion, the definition of “death” has become malleable.
A formal definition was first outlined in the Uniform Determination of Death Act (UDDA) in 1980 by the National Conference of Commissioners on Uniform State Laws. Soon after, the American Bar Association and the American Medical Association accepted the definition as a guideline for determining death (National Conference, 1980). Today, the following criteria are used to define death: “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” (National Conference, 1980). The UDDA attempts to resolve potential conflicts by providing an objective definition; yet, ambiguity is embedded within the language itself. As a result, the debate over how we actually define death continues to rage. Moreover, the policy and potency of the UDDA varies across state lines, further exacerbating its lack of clarity. Many of the legal cases attempting to define what death is under a specific set of circumstances are a result of state-by-state differences in applicable legislation (Association of Organ Procurement Organizations, 2011).
The ambiguity in the UDDA’s language has resulted in a concept known as “whole-brain death.” There are two schools of thought on brain death theory: (1) that brain death is the loss of an integrated whole; (2) that it is the loss of brain function. The first definition focuses on the oxygenation and metabolic activity in certain cells and organs and their relation to the cessation of systemic function in the rest of the body. This essentially distills life to a continued heartbeat and respiratory rate (Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981). The second definition revolves around brain function; it “gives the brain primacy not merely as the sponsor of consciousness (since even unconscious persons may be alive), but also as the complex organizer and regulator of bodily functions” (Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981). This definition reduces mechanical respirators and modern medical techniques to artifacts. “Whole-brain” death occurs when the functioning of the brainstem is destroyed. The inherent difference between the two definitions is itself a source of ambiguity for physicians and families.
Case studies can offer perspective. Some patients are not discernibly dead; rather, they are in a persistent vegetative state (PVS). A PVS is when “a medical patient is completely unresponsive to psychological and physical stimuli and displays no sign of higher brain functions, being kept alive only by medical intervention.” Studies on PVS patients have shown there may be isolated islands of functional brain tissue, raising the possibility that patients may recover with time (Owen et al., 2006). Thanks to modern medicine, PVS patients can be kept “alive” (that is, their hearts beat, their lungs breathe), even when their brains are declared by doctors to be “dead.”
The Jahi McMath case is an example of how challenging it can be to determine what is life and what is death. Then-13-year-old Jahi suffered complications from routine surgery; shortly thereafter, she was declared to be in a PVS. A death certificate was issued. Several doctors advised the McMaths that their daughter was medically dead; however, her family’s religious beliefs prevented them from accepting that Jahi, whose heart beat and lungs breathed, had died (Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981). Her family’s faith redefined what life looked like for Jahi. Although Jahi was dead in one person’s eyes, she was very much alive in another’s.
The impacts of the on-paper debate manifest in the real lives of patients and families. Life versus death controversies have poked holes in the “whole-brain” definition of death, resulting in legal arguments that have gone all the way to the United States Supreme Court (Veatch & Ross, 2016). The fundamental disagreement between those who define death as loss of brain function and those who view death as loss of cardiovascular function remains unresolved.
While it is true the accepted definition of death lacks simplicity and specificity, doctors and families have nevertheless succeeded in taking a view in specific cases, using different doctrines to influence their decisions. Religious texts, for example, have provided some clarity for families deciding whether their loved ones stand on the side of life or death (Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981). Determining brain death is beyond the scope of neurological or legal expertise alone. Whether a patient has crossed the life-death line should also be decided by the families and friends directly impacted (Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981).
Edited by Jinny Yoo
Association of Organ Procurement Organizations. (2011, May). State determination of death laws. Retrieved September 27, 2019, from http://www.aopo.org/state-brain-death-laws/
Bernat, J. L., Culver, C. M., Gert, B., Capron, A. M., & Lynn, J. (1982). Defining death: Which way? The Hastings Center Report, 12(2), 43-44. Retrieved from JSTOR database.
National Conference of Commissioners on Uniform State Laws. (1980). Uniform declaration of death act. Retrieved from http://www.lchc.ucsd.edu/cogn_150/Readings/death_act.pdf
Owen, A. M., Coleman, M. R., Boly, M., Davis, M. H., Laureys, S., & Pickard, J. D. (2006, July 17). Detecting awareness in the vegetative state. Retrieved September 27, 2019, from https://www.amherst.edu/media/view/230061/original/owen%2Bet%2Bal%2B%25282006%2529.pdf
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1981). Defining death : a report on the medical, legal and ethical issues in the determination of death. [Washington, D.C.] :President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.
Veatch, R. M., & Ross, L. F. (2016). The whole-brain concept of death. In Defining death (pp. 39-65). Retrieved from JSTOR database.
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