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James Ensor, "The Bad Doctors" (1892)

Revising the Concept of Death (Again?)

Life: Issue Two

Julia Palmieri

In 1981, a law known as the Uniform Determination of Death Act (UDDA) was passed that rendered the medical determination of death uniform across America. The UDDA came into effect after over a decade of confusion in the medical realm as to what constituted death, ever since a 1968 proposal to define the state of irreversible coma as a new criterion for death. Prior to the UDDA, death was identified by cardiopulmonary criteria, that is, the irreversible cessation of heartbeat and respiratory functions. With this new law, death could legally be determined by either cardiopulmonary criteria or neurological criteria (understood as the irreversible cessation of all functions of the entire brain, including the brainstem) nationwide. The UDDA legally enshrined a new way of understanding and identifying death’s occurrence, enabling physicians to declare the death of patients who were “brain dead” but still had a heartbeat. The history leading up to this sea-change in what constituted death will be outlined below, for there remain serious ethical flaws with the declaration of death by neurological criteria. Moreover, America’s Uniform Law Commission, the legal body which enacted the UDDA in 1981, is currently evaluating proposals calling for the uniform concept of death to be revised, again. The need for a revision to the UDDA is pressing—not because it is outdated, but because there are grave practical and theoretical flaws with the neurological criteria, more broadly known as “brain death.”

In terms of pathology, “brain death” denotes an “acute catastrophic injury involving both hemispheres of the brain,” and must include the irreversible loss of function of the brainstem, which is responsible for spontaneous respiration.[1] However, the concept of “brain death” has been used to denote the death of the patient, declared by means of neurological criteria. Put simply, this concept maintains that the brain is the central integrator of the organism and thus essential for the organism’s functioning. If the brain is irreversibly damaged or destroyed, the organism is to be considered dead. This neuro-centric or brain-centered understanding of the nature of death has generally been upheld within the medical community since 1968 and continues to be defended by philosophers and bioethicists. It is even defended by Catholic scholars as being in conformity with a Catholic understanding of death, that is, as the separation of the soul from the body, or, as John Paul II has described, “the total disintegration of that unitary and integrated whole that is the personal self.”[2] For example, bioethicists of the Pellegrino Center for Clinical Bioethics describe brain death with those very words, continuing to uphold the claim that when the brain ceases to act as “an essential, integrating, and life-preserving organ,” then the death of the patient can be declared.[3] But the controversy over “brain death” has always been whether it is true patient death, particularly when declared in conjunction with organ transplantation.

Historical Emergence of “Brain Death”

The concept of “brain death” was proposed by American anesthesiologist Henry Beecher in response to two technological advances in the mid-twentieth century: modern methods of resuscitation via the mechanical ventilator and breakthroughs in vital organ transplantation. Although the invention of the ventilator in the 1950s helped improve the survival rate of some patients, others were held in a seeming limbo between life and death.[4] This occurred in cases of severe brain injury where patients lost the ability to breathe spontaneously due to brainstem damage or destruction, but in whom respiration and circulation were maintained with the help of a ventilator. The continued use of the ventilator on such patients resulted in the emergence of a new neurologic condition: the severely or “irreversibly” comatose patient.[5]

Neurologists who treated patients with “irreversible coma” in the late 1950s grappled with its prognosis. They decided to introduce a distinction between it and other degrees of the comatose state (known as light, deep, deepest, and vegetative), because it seemed to transcend those categories. The French neurologists Pierre Mollaret and Maurice Goulon labeled it coma dépassé (“beyond” coma), describing it as: “a coma in which is added to the total abolition of the functions of relational life, not simply disturbances, but an equally total abolition of the functions of vegetative life.”[6] Mollaret and Goulon agreed that coma dépassé constituted a sign of fatal prognosis, but they were hesitant to equate it with death itself.[7]

It was precisely this enigmatic condition of the severely or “irreversibly” comatose patient that was redefined as death in August 1968 by Henry Beecher and members of a Harvard Committee convened to “examine the definition of brain death.”[8] The authors re-defined the clinical state of coma dépassé as a new criterion for death, calling this state “brain death” to indicate: i) that the brain of a patient in this condition is permanently nonfunctioning and is therefore “for all practical purposes dead,” and ii) that a patient in this condition can be declared dead, and their respirator turned off.[9] The Report argued that a new definition of death would firstly ease the difficulty in clinically treating severely injured comatose patients for whom nothing could be done, and secondly, it would facilitate obtaining organs for transplantation.[10]

There remains the central question of whether or not patients declared “brain dead” are truly dead before organ removal. the difference between a life-saving donation or a lethal operation.

Working closely with pioneering transplant surgeon Joseph Murray and the neurologist Robert Schwab, Beecher and his committee were looking for criteria that enabled physicians to declare a patient dead in spite of a persistent heartbeat, so that organs could be ethically removed while nominally respecting the “dead donor” rule. Both Beecher and Murray saw this as a tremendous source of life-saving resources, and a great gain for the advancement of science and society.[11] Commenting on this history, Jeffrey Bishop writes that the concept of “brain death” came into existence when organ transplantation appeared as a widespread possibility: “the status of coma dépassé as a diagnostic entity did not change because of something about the patients in coma dépassé, nor did it change because of some new finding in neurology or neurophysiology; rather, this change in diagnostic status was driven by a shift in social circumstances. ... the possibility of transplantation made those with coma dépassé interesting, not just as patients but as potential donors.”[12]

Upon first hearing Henry Beecher’s case for redefining the concept of death, the philosopher Hans Jonas immediately sensed that it wrongly endorsed the use of human beings in experimental ways for the advance of medical progress. As Jonas stated, if “brain death” merely denoted the condition under which artificial respiration or other life-sustaining interventions could ethically be withdrawn, there was nothing “ominous” in the notion.[13] Yet Beecher repeatedly made it clear that the reason for redefining death as brain-death was the cost-saving and life-saving utility it would provide for medicine and society.[14] There was no physiological or biological justification given for why “brain death” constituted the death of the patient, just an argument asserting it to be so.

The Conceptual Defense of “Brain-Death” as Death

A crucial turning point in the conceptual defense of “brain death” as death occurred in 1981 with the publication Defining Death, a report of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research charged with studying the ethical and legal implications of defining death. The Commission upheld the traditional notion of death as the permanent loss of life—rather than the permanent loss of consciousness, as in Beecher’s view—but maintained that death was identifiable by either a cardiopulmonary criterion or a neurological criterion. The irreversible loss of the functioning of the brain, as the body’s primary organ and central regulator of the body’s integration, was proposed as a valid indication of death, defined as “that moment at which the body’s physiological system ceases to constitute an integrated whole.”[15] The concept of “whole brain death” arose out of this line of reasoning. Instead of assuming, as others later argued, that the heart’s ability to beat and the body’s ability to maintain respiration even with artificial aid was an indication of the presence of life, the 1981 President’s Commission argued that a different way of defining death had to be developed, namely, based upon the loss of the body’s ability to be a self-regulating, integrated whole.[16]

This argument was influenced by the work of neurologists Julius Korein and James Bernat, who brought the concepts of integration and organismal wholeness to the forefront of the debate over the concept of “brain death” as death.[17] For Korein and Bernat (and most other neurologists at the time), the functioning of the brain was considered to be the more accurate indicator of life and death due to the predominance of a cybernetic view of the living organism. Put simply, the organism was viewed as an open system that maintained a steady state with its environment through the interactions of many subsystems and feedback loops, ultimately regulated by the brain. The brain constituted the single critical vital component of the organism; when it was destroyed, the organism was to be considered dead. Thus, Bernat argued: “A patient on a ventilator with a totally destroyed brain is merely a group of artificially maintained subsystems,” since the brain, which “integrates, generates, interrelates, and controls complex bodily activities,” has ceased to function.[18]

This conceptual defense of “brain death” went unchallenged within the neurological community until the late 1990s, when the pediatric neurologist D. Alan Shewmon began publishing his studies of “chronic” brain-dead patients—“brain dead” persons who did not succumb to cardiac arrest within 1–2 weeks, as was believed to always be the case.[19] Shewmon’s remarkable evidence led to his re-examination of neurological dogmas concerning the role of the brain as central integrator of the living organism. Once a proponent of the conceptual defense of brain death, Shewmon became one of its biggest critics, arguing that the brain as “central-integrator-of-the-body” rationale is physiologically and philosophically inadequate because some brain-dead bodies exhibit a number of somatic integrative functions.[20] That is, their bodies perform “work” that only living beings are capable of doing: maintain a spontaneous heartbeat, exchange oxygen and carbon dioxide in the lungs, circulate blood spontaneously, exhibit cell growth and repair, maintain kidney and liver function, and even gestate a child.[21] The body did not cease to operate as a living body even if its “central integrator” was destroyed, leading Shewmon to conclude that the brain was more of a modulator and fine-tuner rather than the critical control system of the organism. Contrary to what was thought for decades, Shewmon argued that the brain-dead body “was not dead after all, but rather alive and in a deep and permanent coma and highly prone to die without technological assistance.”[22]

Where Does “Brain Death” Stand Now?

There remain serious practical issues with the declaration of death by neurological criteria, specifically:

1. There are ongoing practical discrepancies in how hospitals and physicians are making a diagnosis of “brain death” with certitude, resulting in dangerous “false positive” cases, as in the tragic case of thirteen-year-old Jahi McMath.[23]

2. Furthermore, current medical tests used to determine whether a patient is “brain dead” do not assess all functions of the entire brain. Specifically, hypothalamic function is not assessed, and as Alan Shewmon has argued, a considerable number of patients diagnosed as brain dead maintain functioning of the hypothalamus, which he considers to be a manifestation of biological life.[24]

3. One of the clinical tests used by some hospitals to declare brain death (the apnea test) carries a known risk of precipitating brain death in a patient who is not dead yet, thereby causing the outcome it seeks to diagnose in the first place.[25]

But beyond these, there remains the central question of whether or not patients declared “brain dead” are truly dead before organ removal. This matters because it is the difference between a life-saving donation or a lethal operation.[26] We assume that the moment of death is able to be stipulated medically or physiologically, at least, death is time-stamped for practical purposes. However, if aliveness is constituted by more than just chemical operations, scientific knowledge of the precise moment at which one passes over from life to death may be impossible to obtain.

Defenders of “brain death” as death continue to argue that the brain confers integration or integrative unity upon the body, and thus that death (body-soul disintegration) occurs with the brain’s destruction. This idea of unity being “conferred” by functionality is metaphysically problematic, for it conflates an ontological reality with temporal physical processes. The living organism functions as a unity or whole not because its systems work in a coordinated way, but rather, its systems are coordinated because it is a unity or whole in the first place. Shewmon argues this very point: the concept of unity is not ascribable to a physical region or part within the body that “causes” unified functioning; rather, unity is “diffusely present” throughout the living body.[27] This is because unity, like vitality itself, transcends mere physicality. Unity is a transcendental property of being (esse), which subsists in a creature (ens), as a concrete and unique unity of essence and existence. Modern scientific analysis can never account for an organism’s wholeness and indivisibility—its unity—on its own terms, that is, as a sum of the interaction of its component parts.

What does this mean for brain death? To claim that the death of the organism has occurred because its integrative unity is tethered to the functioning of the brain as the “central integrator” is metaphysically problematic. Organismal unity—much like vitality—is non-localizable. Understanding organismal unity in strictly functional or physical terms (of integrated relationships and activities subordinate to and ultimately controlled by a “master part”) reduces the metaphysical concept of “unity” to that of organization. This inverts the ontological priority of actuality over potency by making physical functions responsible for wholeness or unity. But as a transcendental property of being, unity is ontologically and chronologically prior to potencies or second acts (including the “vegetative” powers of the body to develop, grow, metabolize, etc.). One way of understanding this reality is by thinking about life’s beginning in the womb: a new organism begins to develop and grow upon the event of conception. This new being is a living, unified whole at once. Its aliveness and unity do not depend on the functioning of its parts (which are in fact not yet present!). It is because the new being in the womb is ontologically a living whole (specifically, a union of form and matter, soul and body) that it is able to grow and manifest increasingly complex physical systems.

Just as the “moment” of coming-into-being can be described as an all-at-once event that exceeds technological definition (precisely because it is metaphysical), so too is death. As John Paul II recalled in an address concerning organ transplantation: “the death of the person is a single event, consisting in the total disintegration of that unitary and integrated whole that is the personal self. It results from the separation of the life-principle (or soul) from the corporal reality of the person.”[28] Moreover, he specified that death “is an event which no scientific technique or empirical method can identify directly.”[29] Instead, biological signs or changes follow death’s occurrence, and these are the confirmatory signs used by the medical profession to note the substantial change. Importantly, John Paul II continues, “the 'criteria' for ascertaining death used by medicine today should not be understood as the technical-scientific determination of the exact moment of a person’s death, but as a scientifically secure means of identifying the biological signs that a person has indeed died.”[30] Technological developments have forced upon us the need for knowledge that may be beyond our grasp. If it is true that, as Hans Jonas argued, “[w]e do not know with certainty the borderline between life and death, and a definition cannot substitute for knowledge,”[31] then we ought to be wary of metaphysical-biological rationales for why a precise moment of organismal death is able to be determined.

Although attempts to amend the issues with the UDDA are well-intentioned, they will ultimately miss the point insofar as neurological criteria continue to be used to determine the death of a human being.

[1] Christopher M. Burkle et al., “Why Brain Death Is Considered Death and Why There Should Be No Confusion,” Neurology 83 (2014): 1464–65.

[2] John Paul II, “Address of the Holy Father John Paul II to the 18th International Congress of the Transplantation Society,” 29 August 2000, §4.

[3] Bioethicists of the Pellegrino Center for Clinical Bioethics, Proposal for Revising the Uniform Determination of Death Act, Hastings Bioethics Forum (February 18, 2022).

[4] For an overview of this history and Beecher’s role in it, see David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (New York: Basic Books, 1991).

[5] Eelco Wijdicks, Brain Death (Oxford: Oxford University Press, 2011), 3.

[6] Pierre Mollaret and Maurice Goulon, “Le Coma Dépassé (mémoire préliminaire),” Rev Neurol. 101 (1959): 4. (Translated by author.)

[7] Mollaret and Goulon, “Le Coma Dépassé,” 10: “But does a flat line necessarily signify the extinction of all cellular activity? Even the placement of needles in the thalamus and in the surrounding regions does not allow us to answer with certainty this question of when no more electrical activity is able to be collected in the deep formations, since some neurons can obviously escape these investigations. But it goes without saying that a flat, prolonged trace has every chance of being a sign of fatal prognosis.” (Translated by author.)

[8] “A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death,” Journal of the American Medical Association 205, no. 6 (August 1968).

[9] “A Definition of Irreversible Coma,” 337 and 339: “It is further suggested that the decision to declare the person dead, and then to turn off the respirator, be made by physicians not involved in any later effort to transplant organs or tissue from the deceased individual. … It should be emphasized that we recommend the patient be declared dead before any effort is made to take him off a respirator, if he is then on a respirator.”

[10] As stated in the Report’s opening paragraph; see “A Definition of Irreversible Coma,” 337.

[11] Henry Beecher, “Scarce Resources and Medical Advancement,” Daedalus 98, no. 2 (1969): 309.

[12] Jeffrey Bishop, “When is Somebody Just Some Body? Ethics as First Philosophy and the Brain Death Debate,” Theoretical Medicine and Bioethics 40 (2019): 422.

[13] Hans Jonas, “Philosophical Reflections on Experimenting with Human Subjects,” Daedalus 98, no. 2 (Spring 1969): 243.

[14] See, for example, Henry Beecher, “Ethical Problems Created by the Hopelessly Unconscious Patient,” New England Journal of Medicine 278, no. 26 (June 1968): 1425–430.

[15] The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death: Medical, Legal, and Ethical Issues in the Determination of Death (July 1981), 33.

[16] See Defining Death, 15–16. For an argument dismantling this assumption, see Michael Nair-Collins and Franklin G. Miller, “Do the ‘Brain Dead’ Merely Appear to be Alive?” Journal of Medical Ethics (2017).

[17] Papers by both neurologists are cited in the 1981 Defining Death report, but it was mainly Bernat’s theory of brain death as signifying death of the “organism as a whole” that became widely accepted. See Paul Scherz, “How the Body Became Integrated: Cybernetics in the History of the Brain Death Debate,” Journal of Medicine and Philosophy 47 (3).

[18] James Bernat et al., “On the Definition and Criterion of Death,” Annals of Internal Medicine, 94.3 (1981): 391.

[19] Evidence of “survivors” of brain death was reported by D. Alan Shewmon in “Recovery from ‘Brain Death’: A Neurologist’s Apologia,” The Linacre Quarterly 64, no. 1 (1997): 3096, and “Chronic ‘Brain Death’: Meta-Analysis and Conceptual Consequences,” Neurology 51, no. 6 (1998): 153845.

[20] Shewmon, “Recovery from ‘Brain Death,’” 66.

[21] See D. Alan Shewmon, “Controversies Surrounding Brain Death,” in Stephen Jensen, The Ethics of Organ Transplantation (Washington, DC: The Catholic University of America Press, 2011), 2142, specifically pp. 3138.

[22] Shewmon, “Recovery from ‘Brain Death,’” 67.

[23] Matthew Hanley, “Inconsistent Application of the Neurological Criteria,” Determining Death by Neurological Criteria: Current Practice and Ethics (Washington, DC: The Catholic University of America Press, 2020), 39. On the case of Jahi McMath, see Rachel Aviv, “What Does It Mean To Die?” The New Yorker, 5 February 2018.

[24] D. Alan Shewmon and Franklin G. Miller, “Revising the Legal Standard for Determining Death,” Hastings Bioethics Forum (June 17, 2021).

[25] Bioethicists of the Pellegrino Center for Clinical Bioethics, “Proposal for Revising the Uniform Determination of Death Act,” Hastings Bioethics Forum (February 18, 2022). See also D. Alan Shewmon, “Controversies Surrounding Brain Death,” in The Ethics of Organ Transplantation (Washington, DC: The Catholic University of America Press, 2011), 40–42.

[26] Michael Nair-Collins, “The Public’s Right to Accurate and Transparent Information about Brain Death and Organ Transplantation,” in Defining Death: Organ Transplantation and the Fifty-Year Legacy of the Harvard Report on Brain Death, special report, Hastings Center Report 48, no. 6 (2018).

[27] Shewmon, “The Brain and Somatic Integration: Insights into the Standard Biological Rationale for Equating ‘Brain Death’ With Death,” Journal of Medicine and Philosophy 26, no. 5 (2001): 472.

[28] John Paul II, “Address of the Holy Father John Paul II to the 18th International Congress of the Transplantation Society,” 29 August 2000, §4 (emphasis original).

[29] Ibid., (emphasis original).

[30] Ibid., (emphasis original). Of the neurological criterion, “the complete and irreversible cessation of all brain activity”—not to be confused with partial brain death or upper/higher brain death—John Paul II has stated that “if rigorously applied, [it] does not seem to conflict with the essential elements of a sound anthropology” (§5). His statement is cautionary, and he notes that philosophers and theologians have an important contribution to make in the ethical realm, helping to “clarify the criteria for assessing what kinds of transplants are morally acceptable and under what conditions, especially with regard to the protection of each individual’s personal identity” (§8). However, his remarks are not to be taken as endorsing the neurological criteria for death. See Doyen Nguyen, “Pope John Paul II and the Neurological Standard for the Determination of Death: A Critical Analysis of His Address to the Transplantation Society,” The Linacre Quarterly 84, no. 2 (2017), and Doyen Nguyen and Joseph Eble, “Brain Death: What Catholics Should Know,” Homiletic & Pastoral Review.

[31] Hans Jonas, “Against the Stream: Comments on the Definition and Redefinition of Death,” Philosophical Essays: From Ancient Creed to Technological Man (New York: Atropos Press, 2010), 140.

Julia Palmieri recently graduated from the Ph.D. Program at the Pontifical John Paul II Institute for Studies in Marriage and Family, and now teaches bioethics at St. Augustines Seminary in Toronto, Ontario. Her dissertation applied the thought of Hans Jonas in a critique of theoretical foundational premises of bioethics in America.

Posted on December 4, 2023

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