Special Section: Organ Ethics

Baby T. DAVID A. GOLDSTEIN

The recent case of Baby Theresa has once again raised the dilemma of organ donation from anencephalic infants. Baby Theresa's distraught parents wanted to create something good from something tragic, by donating the baby's organs so that other children could live. If the physician waited for their baby to die naturally, the organs would not be suitable for transplantation. If they took them before death they could be harvested. For this reason, the parents petitioned the Florida courts to declare their baby dead at birth so the organs could be removed at an earlier, more propitious time. The court refused. The infant died, its vital organs unusable. Organ harvesting from anencephalic children received a great deal of attention in 1987-88, both in the public media and in the academic press.1"8 At that time Loma Linda University was actively engaged in the recruitment of organs from anencephalic babies. The medical utility of such organs was assessed in a very analytical fashion by Shewmon et al.1 In a fairly conservative evaluation, the authors found that after all variables were considered, "the yearly number of children nationwide who would actually benefit from anencephalic kidneys, hearts and livers, were 0, 9,1, respectively." This type of analysis contributed in large part to the cessation by Loma Linda University of their protocol using anencephalic children as organ donors. I will evaluate three thorny questions that remain. Should society, with its voice being the courts, intervene at all in such decisions or should these dilemmas be left solely to parents and physicians? Would reclassification of anencephalics as nonpersons obviate this dilemma entirely? If the present climate of not allowing such organ harvesting persists, what "good" might be salvaged for the parents? Role of Society Society has become increasingly inured to the concept of ending life by an act of omission or commission, if you will. The fallout from the Nancy Cruzan case includes the Patient Self-Determination Act (PSDA) in which patients are obliged to decide on what therapies they might forego at the end of life. The state of Washington nearly passed a referendum legalizing euthanasia and Californians are about to pass judgment on physician-assisted suicide. A not-so-subtle consequence of such deliberations is ironically a sense of empowerment over issues of life and death. Cambridge Quarterly of Healthcare Ethics (1992), 4, 345-348. Printed in the USA.

Copyright © 1992 Cambridge University Press 0963-1801/92 $5.00 + .00

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Physicians have grappled with the resultant moral upheaval with varying degrees of success for decades. Now each of us has the opportunity to at least participate with our physician, or clergy, or our loved one(s) on how and, to some extent, when we will die. If we can shorten the life of a patient to benefit an individual(s) by reducing the emotional or financial burden on them of a terminally ill loved one, then might there be a situation(s) that will permit shortening life to aid someone more distant from the patient than a loved one, such as an anonymous transplant recipient? Is the dilemma of anencephalic infants and organ donations such a situation? The answer is decidedly and resoundingly no. There should be no situation where a person's life is shortened to benefit society. If we examine how our society deals with organ donation, we see that a cadaveric organ transplant is performed after a thoughtful deliberation has been made by a future patient or designated surrogate and a physician. These individuals decide that when they die their organs will continue to be perfused so that kidneys, heart, and liver may be harvested in an attempt to give the "gift of life" to another. The difference between this process and that proposed by the solution with anencephalic children is twofold. First, anencephalic children make no such wishes. Using their organs without their permission would open the door to doing so with other patients as well. Second, the decision to withhold or withdraw care is being made largely so as to aid another. Individuals and/or their surrogates may decide to refrain or withdraw from certain therapeutic modalities in an attempt to end the individual's life without the benefit of such therapies. But they are doing so of the patient's own volition. There may be a wish to donate the organs in such situations, if the organs are suitable. This is done only when it has been an express wish of the patient or surrogate and the patient has subsequently died. Although life is shortened in such circumstances, the definition of death remains intact; only when death occurs does organ retrieval begin. As guidelines have been established in declaring death and withholding and withdrawing care, policy makers' attentions have guarded against individuals with vested interests playing decisive roles. The PSD A has provisions preventing hospital employees from witnessing advance directives. Ethics committees delve into motivations when decisions about termination of life support are made. At the bedside and at institutional levels, the avoidance of conflict of interests is instrumental in decision making. When society determines that certain ethical standards are so important that they cannot be violated, such standards are often enacted into law or codified by case law. (This differs from the situation of abortion in which society continues to wring its ethical conscience, but various institutions, including the courts, do make political decisions.) When the courts have interviewed to protect the children of parents who are either Jehovah's Witnesses or Christian Scientists, they do so in part to allow the children to reach adulthood so they can decide for themselves what religion they wish to practice. The courts are also protecting the otherwise unprotected. There is a long-standing tradition in our society of protecting innocents from harm. While court decisions have evolved into protecting the individual's right to die, or their surrogate's right to make that decision, analogous decisions have been made to both protect innocents and to prevent the abbreviation of life to directly benefit another. 346

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Anencephalic Infants as Nonpersons The argument that anencephalk babies are not persons and therefore can be killed so as to harvest their organs is fraught with difficulties. An often-used argument is that the profound nature of the neurological defect makes them something less than a person and therefore not due the right to life. They argue that the profoundly low intelligence quotient9 or the inferiority to species other than human beings10 makes the neurological status of anencephalk children inconsistent with that of a person. The major problem with such arguments is that it is intellectually sloppy thinking. Neurologists and philosophers alike can persuasively argue that even normal neonatal behavior in many ways is intellectually inferior to that of mature dogs or cats. Although many persons achieve relationships with animals, superior in many ways to relationships formed among people, we do not elevate the species description of canines or felines to that of personhood. In addition, other gravely disabled individuals have similarly profound neurological impairments. Patients in the persistent vegetative state seem to similarly rely predominantly on brain stem function for life. Other profoundly affected individuals with degenerative central nervous system disorders appear to have very little relationship with their environment. Some would argue that these individuals were once persons and therefore sit upon a higher rung in the ladder of personhood than do those with anencephaly. Although the specific diagnosis of anencephaly can be made radiologically, the ambiguity of neurological definitions does not permit a clear cut-off among severe neurological deficits. Prudent men and women may disagree on the distinctions but not sufficiently to allow an isolated definition of personhood. Salvation for Parents The death of a newborn is a tragic and traumatic event for everyone involved, especially the parents. The birth and death of an anencephalic child may be an even more emotionally wrenching event. Perhaps the most compassionate gesture is to suggest to the parents that they continue their grieving process uninterrupted by the vicissitudes of court battles and media attention. In an era when the philosopher in us all questions the mores and values of society, death and the grief associated with it are constants. The search for meaning in the death of an innocent will always occur, but such a search should not preordain even the most offenseless of humans to roles as sacrificial lambs.

Notes 1. Shewmon DA, Capron AM, Peacock WY, et ah The use of anencephalic infants as organ sources. Journal of the American Medical Association 1989;2161:1773-81. 2. Walters JW, Ashal S. Organ prolongation in anencephalic infants: ethical and medical issues. Hastings Center Report 1988; 18 (Oct./Nov.):19-27. 3. Shewmon D. Caution in the definition and diagnosis of infant brain death. In: Thomasma DC, Monagle JF, eds. Medical Ethics: A Guide for Health Professionals. Rockville, Maryland: Aspen Systems Corp., 1987:38-57. 4. Annas GJ. From Canada with love: anencephalic newborns as organ donors? Hastings Center Report 1987; 17 (Dec.):36-8.

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David A. Goldstein 5. Capron AM. Anencephalic donors: separate the dead from the dying. Hastings Center Report 1987; 17 (Feb.):5-9. 6. Arras JD, Sinnar S. Anencephalic newborns as organ donors: a critique. Journal of the American Medical Association 1988; 259:2284-5. 7. Fost N. Organs from anencephalic infants: an idea whose time has not yet come. Hastings Center Report 1988;18 (Oct./Nov.):5-10. 8. Coulter DL. Beyond Baby Doe: does infant transplantation justify euthanasia? Journal of the Association of Persons with Severe Handicaps 1988; 13:71-5. 9. Fletcher J. Indicators of humanhood: a tentative profile of man. Hastings Center Report 1972;2 (Nov.):l-4. 10. Singer P. Sanctity of life or quality of life? Pediatrics 1983;72:128-9. 11. Krauthammer C. Baby Theresa stands firm on a frontier. Los Angeles Times 1992 Apr. 6:B5.

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Special Section: Organ Ethics Baby T. DAVID A. GOLDSTEIN The recent case of Baby Theresa has once again raised the dilemma of organ donation from an...
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