Dying Through Organ Donation

This article was downloaded by: [88.64.17.223] On: 27 July 2014, At: 12:32 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

The American Journal of Bioethics Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uajb20

Sketching the Alternative to Brain Death: Dying Through Organ Donation Ralf J. Jox

a

a

Ludwig-Maximilians-University Munich Published online: 21 Jul 2014.

To cite this article: Ralf J. Jox (2014) Sketching the Alternative to Brain Death: Dying Through Organ Donation, The American Journal of Bioethics, 14:8, 37-39, DOI: 10.1080/15265161.2014.925163 To link to this article: http://dx.doi.org/10.1080/15265161.2014.925163

PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions

Brain Death

Sketching the Alternative to Brain Death: Dying Through Organ Donation

Downloaded by [88.64.17.223] at 12:32 27 July 2014

Ralf J. Jox, Ludwig-Maximilians-University Munich The distinction between being alive and being dead is pivotal for persons and for society, not least because it affects the moral and legal status of individuals. The ordinary meanings of the words “alive” and “dead” are easily comprehensible if we look at the typical representations, such as a person walking on the street or a corpse in the grave. This does not, however, preclude that these terms are vague in the sense that there is a fuzzy borderland between them. The same is true for the words “day” and “night”: Although there is a clear categorical difference between the two, it is difficult to pinpoint when exactly day ends and night begins. In contrast to our language, natural processes are transitions, and the impossibility to identify an exact point of transition has long been known in philosophy as the “sorites paradox” (Hyde 2014). One of the attempts to solve this quandary is to stipulate the point of transition by definition, based on policy arguments. This is what modern states do when they legally define death based on neurological determination (“brain death”). Truog and Miller (2014) in their target article rightly categorize this as an example of the quite common “legal fictions” and explain it by the analogy of legal blindness. They overlook, however, a critical error in this analogy, which in fact corroborates their claim to change the legal fiction of death determination. While persons with a visual acuity of less than 20/200 indistinguishably appear and behave like completely blind persons, this phenomenal identity is not the case for neurological death determination; in fact, “brain-dead” patients appear more alive than dead and seem not to have lost their essence as organisms as a whole (Table 1). While a legal fiction is counterintuitive, there may still be good policy arguments supporting its use. Bernat in his article maintains that the policy of neurological determination of death has been successful because of its legal and medical acceptance in most parts of the world. This assertion, however, can be doubted. First, the unexpectedly low rate of postmortem organ donations in many countries may demonstrate that brain death is less accepted (and less understood) by both lay people and health care professionals than is usually assumed (Shah, Kasper, and Miller 2014; Joffe et al. 2012). In a recent survey among 236 senior citizens in Germany, 74% could not identify the correct definition of brain death (Wagner and Jox 2014). Second, the very fact that public information and campaigning for

postmortem organ donation commonly use the word “death” and conceal the details of brain death underscores the dubiousness of this legal fiction. Third, while the policy of brain death may have been practically effective in the past, it is increasingly inappropriate in the future: The number of severe brain traumas is declining, and the medical options to maintain and improve brain function after critical injuries are increasing. In addition, life-sustaining treatment is often being foregone before patients evolve into brain death, based on advance directives or surrogate decisions. All of these developments lead to lower numbers of brain death and, consequently, to a declining rate of organ donors. Ironically, it was medical progress that had generated the concept of brain death in the 1960s, and it is again medical progress that threatens to eliminate it. Moreover, it is clear that any determination of death cannot ignore the biomedical facts: People have always feared to be declared dead without actually being dead, so they want any death determination to be empirically rooted in biological reality. Truog and Miller succinctly summarize the empirical arguments against the brain death rationale, and Bernat also concedes the brain death is not tantamount to the inevitable disintegration of the organism. Other concepts that base death determination on the irreversible loss of consciousness not only have the epistemological problem that loss of consciousness can never be proven from the outside, but they also confuse two levels of properties: properties typical for the human species on the one hand, and on the other hand the properties of being alive or dead. The latter apply to all organisms, so a species-specific death determination does not make sense. From a biological view, brain-dead patients fulfill all characteristics of living organisms: They have a genetic program that can adapt to the environment; they are distinct entities with an internal compartmentalization; they are open, metabolizing systems consuming and producing energy; they maintain constant regeneration of molecules, cells, and tissues and are even capable of reproduction; and they show at least basic bodily reactions to environmental stimuli, including development and growth (Koshland 2002). Usually, all these processes occur spontaneously in living organisms. Yet as human beings, we have developed cultural ways to assist and even substitute these natural processes. We call these medical technologies life-sustaining treatment if the person would shortly die without

Address correspondence to Ralf J. Jox, MD, PhD, Institute for Ethics, History and Theory of Medicine, Ludwig-Maximilians-University Munich, Lessingstrasse 2, D-80336 Munich, Germany. E-mail: [email protected]

August, Volume 14, Number 8, 2014

ajob 37

The American Journal of Bioethics

Table 1. Phenomenal appearance of dead bodies according to the kind of death determination Routes of sensory perception

“Traditional” death determination

Neurological death determination (“brain death”)

Visual

Body immobile Pale skin Symbols of death (flowers, cross, praying hands. . .) Body cool or cold Pulse absent Limb stiffness Silent Cadaveric smell

Chest movement, reflexes Normal color Symbols of life (critical care equipment) Body warm Pulse present Limbs usually flexible Sounds of respirator, heartbeat, monitors Normal/clinical smells

Tactile


Auditory Olfactory

them. Hence, the medical assistance or replacement of vital organ functions does not render a person dead—otherwise we would have to declare each dialysis patient dead. There is no reason why this should be different if vital functions of the brain are assisted or substituted, such as behavioral food and fluid intake, the coordination of respiration, or thermoregulation. In fact, the recent progress in life-sustaining technology substituting vital functions of the brainstem explains why brain-dead patients do not inevitably disintegrate. It can be expected that our abilities to sustain life in severe and even complete loss of brain function may further advance in the future. In summary, the neurological determination of death is biologically unfounded and lacks good policy arguments to be a justified legal fiction. The one and only argument, of course, is that it provides organs for transplantation, which is indisputably an extraordinary benefit to the organ recipients and to society. As long as tissue engineering and organ printing are not advanced to the stage of clinical application, we need organ transplantation. Yet if the supply of transplantable organs can be met (and even increased) by another policy than brain death, it may well be worth considering such a policy. Truog and Miller indicate that such a superior policy would be to abandon the dead donor rule and remove vital organs from living persons. Given that vivisection is another horrid fear of humans, how could this policy ever be ethically justified and gain public acceptance? Obviously, such a practice would amount to killing, because death is deliberately caused by removing vital organs that are capable of rescuing another person’s life. The main objection to this practice, therefore, is the deeply rooted prohibition to kill, which cannot be simply outweighed by the utilitarian idea that nobody will be harmed or wronged if the organ donor consented. Similar to euthanasia, and ideally better than it has been done for euthanasia, we would need a whole new concept of dying through organ donation. There are at least five principles that would have to be considered by such a new policy: (1) Dying through organ donation would have to be restricted to situations at the end of life, due to extensive brain injury or a terminal disease. If only those patients were eligible who depend on

38 ajob

life-sustaining medical treatment and for whom an ethically justified decision has been made to withdraw this treatment according to the patient’s will, dying through organ donation would be an alternative to treatment withdrawal. (2) The competent patient’s informed and voluntary consent to dying through organ donation would be paramount, but could also be given prospectively via an advance directive. To ensure full autonomy, individual information and counseling by a physician should be mandatory. (3) The whole process of dying through organ donation would have to reflect respect for a dignified dying and the families’ needs for rituals of farewell and emotional support. In our survey among elderly German citizens, 59% expressed concerns that organ donationrelated critical care measures jeopardize a dignified dying (Wagner and Jox 2014). (4) Deep anesthesia and narcosis during organ removal would have to prevent any pain or suffering by the dying patient. (5) Misuse, social pressure, and slippery slopes would have to be forestalled by legal regulations and professional oversight. These conditions would ensure that a policy of dying through organ donation could become a safe and accepted policy that respects the patient’s autonomy, avoids any harm or social risk, and enables many more people to donate their organs and reduce the deplorable shortage in organ transplantation. & REFERENCES Hyde, D. 2014. Sorites paradox. In The Stanford encyclopedia of philosophy (spring 2014 edition), ed. E. N. Zalta. Stanford, CA: Metaphysics Research Lab, Center for the Study of Language and Information, Stanford University. Joffe, A. R., N. R. Anton, J. P. Duff, and A. Decaen. 2012. A survey of American neurologists about brain death: Understanding the conceptual basis and diagnostic tests for brain death. Ann Intensive Care 2(1): 4. Koshland, D. E., Jr. 2002. Special essay. The seven pillars of life. Science 295(5563): 2215–2216. Shah, S. K., K. Kasper, and F. G. Miller. 2014. A narrative review of the empirical evidence on public attitudes on brain death and vital organ transplantation: The need for better data to inform policy.


Brain Death

Journal of Medical Ethics, Published online 25 April 2014. doi: 10.1136/medethics-2013-101930. Truog, R. D., and F. G. Miller. 2014. Changing the conversation about brain death. American Journal of Bioethics 14(8): 9–14.

Wagner, E., and R. J. Jox. 2014. Patients torn in two directions: If advance directives and donor cards coexist. In G. J. Agich and S. Reiter-Theil, ed. 10th International conference on clinical ethics consultation, 71. Paris, France: Paris Descartes University.

Brain Dead Patients Are Still Whole Organisms


Nicholas Sadovnikoff, Brigham and Women’s Hospital Daniel Wikler, Harvard School of Public Health Bernat’s (2014) tenacious but unsatisfying defense of the view that brain-dead patients—even if stabilized and maintained in intensive care units (ICUs)—are dead concludes with his affirmation of the observation that the matter is “well settled yet still unresolved.” We concur with both judgments: The legal question was well settled decades ago in this country, by statutes enacted in every state, and he is correct, also, in noting that “opponents have been unsuccessful in catalyzing a public movement sufficient to change medical practices or public laws” and that “there has been no sustained public outcry to question or abandon the practice of brain death.”1 We also believe that the matter remains unresolved, by which we mean an adequate argument or basis for adopting this view has never been provided. Since Bernat concedes this, we are puzzled by Bernat’s commitment to its validity. We examine here the reasons he provides. The lack of resolution to which Bernat refers has to do with what he calls the “biophilosophical” justification of regarding brain death as death. Damaging critiques of this view were published as early as the mid-1970s, beginning with Ronald Becker’s “Human Being: The Boundaries of the Concept,” published in the prominent journal Philosophy and Public Affairs (Becker 1975); his argument was amplified and elaborated by others soon thereafter in the same journal (Green and Wikler 1980). The arguments advanced in those papers have never been refuted, and still remain a convincing and devastating rebuttal. Additional arguments, some of which stem from subsequent scientific research by Shewmon, are noted in the article by Truog and Miller (2014) in this issue. Space does not allow us to restate these arguments in detail, which ought to be familiar to anyone who contributes to this literature, but we will outline the strategy. The

first step is to gain agreement that what is at issue is not a decision (e.g., whether to withdraw life supports, or to remove a vital organ for transplantation) but rather to find the answer to a simple question: Is this patient—correctly diagnosed as brain dead, but continuing to breathe, circulate blood, maintain body temperature and blood pressure, digest, grow, and even gestate, for months on end—alive or dead? These functions are not characteristics of corpses. Why then regard this one as a corpse? There is, according to these critiques, no satisfactory answer to this question. It does no good to point to the patient’s permanent loss of consciousness, because the same is true of some patients whose brainstems are intact (and who breathe on their own), and they would be classified as alive under the brain death definition. Pointing to the dependence of the brain-dead patient on external life supports likewise fails to distinguish such a patient from those with intact brainstems—and hence alive, according to the brain-death definition—who require life supports (e.g., a quadriplegic who requires a ventilator). Conjoining these—almost always the next step taken by defenders of the brain death definition—is not only ad hoc (i.e., has no justification of its own) but is demonstrably inadequate: Consider the quadriplegic who falls into an irreversible coma but whose brainstem remains intact. This patient is (a) permanently unconscious and (b) machine-dependent, but according to the brain death definition, remains alive. Bernat’s confidence in the brain death definition would be justified only if he could rebut this critique, which he does not try to do. His favored defense centers on his concept of “the organism as a whole,” which remains alive only as long as the brainstem is intact. Life functions after brain death are, in this perspective, those of parts, akin to an isolated heart beating in a mechanical contraption or a

Address correspondence to Nicholas Sadovnikoff, Brigham and Women’s Hospital, Anesthesiology, Perioperative and Pain Medicine, 75 Francis Street, Boston, MA 02115, USA. E-mail: [email protected] 1. Oddly, Bernat observes (correctly, we believe) that “Brain death . . . remains poorly understood by the public and health professionals,” and “more work is necessary to establish its biophilosophical justification and to educate health professionals and the public” (3). What weight then should be given to the absence of public outcry by a public so poorly educated and ignorant of the real issues?


ajob 39