It will come as no surprise to those who have observed or participated in the major bioethical debates of the past fifteen years that often contributors on all sides of an issue not only passionately disagree but seemingly talk past one another. Genuine debate is infrequently joined because advocates of a given proposal often resist the impulse of critics to explore both its probable and unanticipated consequences. Typically, advocates characterize their proposed change in the bioethical status quo as a commonsense accommodation to changing mores and advances in medical technology. They are not interested in "what-ifs," but want debate on their recommendation limited strictly to its "merits."
By contrast, critics usually ask two related questions. First, how momentous--now and in the foreseeable future--will the impact of the contemplated change be on the immediately affected group, be that the unborn, disabled infants, or those in a persistent vegetative state? Second, is the reasoning used applicable to others, especially to broader categories of the medically dependent and disabled? Such questions require that the assumptions underlying a given proposal be spelled out if we are to know whether the requirements for inclusion under society's protective arm have been revamped. That is, are the qualifications for "personhood" being altered, and if so, at whose expense?
Proponents typically deny any broader implications, or deny that anyone can say what they will be. Nor do they believe they should be held responsible if others build on (or distort) the change they are recommending. In addition, they may attempt to preclude further debate by asserting that, paradoxically, it is the critics' rigid adherence to such abstract principles as the sanctity of all human life that will guarantee that when the inevitable readjustment is made, the changes will be far more sweeping than they would have been had opponents simply bent a little.
The controversy over Loma Linda University Medical Center's (LLUMC) protocol for using infants born with anencephaly as organ donors is a classic example of this phenomenon. Most of the transplant surgeons and associated medical personnel at Loma Linda assure observers and critics that while the use of anencephalic babies as organ donors may seem like an abrupt change in the way we customarily treat patients, it is in fact good and ethically responsible medicine. The child's dignity, it is claimed, is preserved for two reasons: First, even though the infant is placed on a ventilator solely to maintain his organs until he qualifies as brain-dead, this procedure is limited to a maximum of seven days. Second, they are "respected as human beings because they serve a highly worthwhile purpose."
Nor on their view is the baby's humanity compromised. Indeed, in one sense it may be enhanced. While the anencephalic child will certainly die, his organs will "live on" in another child who would otherwise die. Most important, physicians involved in this controversial practice vigorously insist they are honoring "accepted" criteria for brain death. 
Why all the criticism? Why has the National Right to Life Committee called on LLUMC to observe a moratorium? There are three principal reasons. To begin with, if physicians await a reliable diagnosis of total brain death, in all likelihood anencephalic infants would never become a source of usable organs.  Several Canadian physicians associated with such transplants have recently complained that their efforts cannot succeed unless there is a change in the method of determining brain death in anencephalic infants. On the one hand, parents who initially agreed to allow their child's organs to be removed are withdrawing their consent when after several days on a ventilator their child is not brain-dead. On the other hand, physicians are acknowledging uncertainty about what will happen if anencephalics are maintained on life support and given palliative care. Dr. John Watts, chairman of the Canadian Pediatric Society's bioethics committee, has commented, "there's no reason for (the anencephalic) to die on life support." 
Physicians at LLUMC are not willing to go this far. Yet there has been a significant shift recently away from an initial posture of extreme cautiousness. While earlier the need for long observation periods with confirmatory electroencephalogram (EEG) and cerebral blood flow (CBF) tests to confirm brain death was considered mandatory, Dr. Joyce Peabody, lead author of LLUMC's protocol, now contends that the diagnosis of brain death in newborn infants, "normal" or otherwise, does not require CBF testing. 
An additional concern of critics is that using anencephalic babies as organ suppliers violates the Kantian injunction never to treat anyone as a mere means to someone else's end. Initially, defenders conceded that the issue had to be addressed. For example, David Larson, director of the Center for Christian Bioethics at LLUMC, argued that an acceptable transplant must meet three provisions: It must be for "medically significant reasons, hopefully to save another baby's life"; must impose "no additional discomfort or distress upon the baby"; and be performed only with genuine parental consent. 
More recently, however, some have contended that this bedrock principle of Western ethics cannot and should not be applied to anencephalic infants. Such infants cannot and will not feel or think; since they lack these capacities, they cannot be said to have any interests to defend. Thus, anencephalic infants need not be treated as ends-in-themselves.
In this context, a third concern is easier to understand. It may soon be generally agreed that anencephalics cannot, if whole brain death criteria are used, be considered organ donors. However, proponents of the practice may appeal to any of three alternatives: Amend the definition of death so that the anencephalic child is "dead" by virtue of his anomaly (this is called "definitional gerrymandering" in other contexts); concede that the child is alive but remove his organs anyway on utilitarian grounds; or create an entirely separate ethical category for anencephalic infants, such as "brain absent," on the grounds that anencephaly is an absolutely unique category, "sui generis." 
The common denominator to these defenses is a view of the baby born with anencephaly that almost entirely dismisses his humanity and that asserts "the ability to harm such infants is nonexistent--partly because they don't have any hope of consciousness or mental power, and also because their prognosis is uniformly terminal."  The anencephalic infant is viewed as a nonperson at best, subhuman at worst. Dr. Leonard Bailey, who has performed transplants at Loma Linda from both xenographic and anencephalic sources, has indicated that the preferred donor would be a baby born with anencephaly rather than a baboon: "Not only does the [anencephalic] have human genes, but it is a nonperson and sure to die, whereas the monkeys are living and, well, there's a down side to that." 
Two mistaken, but related, assumptions undergird support for these various alternatives. The positions of many proponents reveal a complete unwillingness to entertain the possibility that mistakes can be made in the diagnosis of anencephaly and/or that other brain-damaged patients might be "volunteered" as organ donors. They express utter certainty that anencephaly can never be misdiagnosed and that it is a unique malformation.  On these grounds, worries about the so-called slippery slope coming into play can be dismissed.
A moment's reflection will show how unreliable such guarantees are. There is no anomaly that cannot be misdiagnosed, and this holds particularly true for anencephalic infants. For example, one baby entered into LLUMC's protocol was later referred back to an out-of-state medical center when LLUMC doctors determined the baby was not a true anencephalic. 
In addition, even if physicians could always reliably distinguish anencephaly from a bewildering variety of related neurological defects, this does not make anencephaly "unique" in any important sense. Other neural tube anomalies such as hydraencephaly are invariably fatal, even if the child lives a few weeks longer. As Alexander Capron has noted, "whatever their clinical differences from anencephalic babies, hydraencephalics and some microcephalics are conceptually indistinguishable if the characteristic separating anencephalics from normal children is their lethal neurological condition." 
Yet, if the following summary of the case for taking the organs of anencephalic infants, as offered by bioethicist Arthur Caplan, is indicative, it would seem hard to deny that other categories of brain-damaged infants are likely candidates to "donate" organs. Caplan contends that parents want to donate the organs of their anencephalic baby, and that their lack of consciousness and terminal prognosis implies such children cannot be harmed. Moreover, "the result is a great deal of benefit where the organ shortage is most severe, which is for infants and young children." 
Indeed, the possibility of expanding the list of suitable organ donors is freely acknowledged by some proponents of removing vital organs from anencephalic infants. Some have maintained that because patients in irreversible comas are like anencephalic infants in that they have "no possibility of any future sentient life," and thus "no intrinsic value," we ought to be able to take the organs of people in persistent vegetative states. 
The dehumanization of anencephalic babies, the restlessness with the current definition of death, and the willingness to admit that the logic for brain death exceptions applies elsewhere together reinforce a conclusion right-to-life critics had tentatively reached some time ago. The debate over the use of anencephalic infants as organ donors is both the latest chapter in the lengthy saga of how to treat patients claimed not to have achieved (or incapable of achieving) "personhood" and an opening for those who believe it is time to amend the definition of death to include "higher" brain or "neocortical" criteria for death. Dr. John McDonald, president of both the American Society of Transplant Surgeons and the United Network for Organ Sharing, who describes anencephalic infants as "incomplete human organisms," has indicated that "we are now in the same dilemma regarding the anencephalic that we were regarding the diagnosis of death by cessation of heartbeat until it became necessary to pronounce it earlier for good and sound reasons. Our society recognized this and approved of a method [i.e., brain death] of pronouncing death earlier." (emphasis added). To not use the organs of anencephalic infants for other babies is "to many of us immoral," McDonald contends, observing that "we fully expect to change the law allowing this highly moral act." 
In spite of assurances to the contrary, it is highly unlikely that the logic undergirding these exceptions to the whole brain or cardiopulmonary criteria for death can be confined to anencephalic babies. For the question of removing vital organs from anencephalic infants is inextricably bound up with three other issues: abortion, harvesting of fetal body parts, and treatment of persons in persistent vegetative state.
There is considerable support in medical circles for third trimester abortion when the child is diagnosed with anencephaly.  In light of the fact that the anencephalic child could have been aborted legally, the insistence that anencephalics be brain dead is a source of irritation among some transplant surgeons, as reflected in the comments of Dr. Bailey: "It's absolutely absurd that I have a legal right to abort that baby out of the mother within a week of delivery, [but] because it's delivered, I have no access to it. It's a very inconsistent sort of law." 
The use of body parts from anencephalic infants is also linked to the heated debate over harvesting fetal body parts from abortion victims. Only momentary cautiousness prevents those who transplant fetal tissue from taking whole organs from babies aborted in the third trimester. Like an anencephalic infant, an unborn baby is said to lack consciousness and personhood, and has body parts said to be capable of correcting or ameliorating everything from minor hearing loss to Parkinson's disease. There is also sentiment for taking the tissues and organs of live aborted babies if transplantation from dead sources proves infeasible or inadequate. 
Patients in a persistent vegetative state are functionally no different from an anencephalic newborn. Their current moral and legal status is in a state of flux.  They are simultaneously said to be nonpersons and holders of the personal right to refuse all medical treatment, including food and fluids, a right that may be exercised for them by third parties using substituted judgment. If this right is exercised, they are going to die, whatever the cause is said to be. If persons in a persistent vegetative state have no consciousness, no capacity to think, and are going to die anyway, why should they not be "allowed" to "donate" their organs?
In the meanwhile, parents of babies born with anencephaly are twice devastated; first, by the birth of a dying child, second by the misconception that there is a realistic chance their child's organs can be transplanted to another infant. It is a very sad situation made worse by the extraordinarily favorable publicity given to a procedure with a track record of very few successes.
No one faults the desire of parents to "redeem" the death of their anencephalic baby. But, it is a profound misreading of what it is that gives life meaning, no matter how brief that life may be, to say that the only way an anencephalic child's life can have significance is if his organs can be transplanted. The perspective underlying much of the public clamor is an application of raw utilitarianism, reducing a person to a function. The sole utility of a child with a lifespan of a few days becomes organ transplantation.
A utilitarian reading of human life flies in the face of the best trends in modern thought, the willingness to widen the circle of concern to include all persons. This inclusiveness is also the impetus for developments in medical practice and health care: Dedication to the patient as a person with intrinsic worth is a core value of the classical medical tradition.
Finally, in investigating why anencephalic infants are being considered as organ sources, nothing has been more surprising than our discovery that some bioethicists and transplant surgeons do not seem to believe (and may never have believed) that brain death and the traditional definition of death are equivalent measurements of the same physiologic state. This claim is now actually used in some circles to justify moving beyond whole brain death to a view that people who have lost "higher" brain functions are also dead. Others, whatever their opinions on the equivalency issue, frankly believe it is time for "a substantial adjustment in our thinking about death, one that changes the focus from biological to psychological processes." 
Given this development, it is hard not to agree with the warnings sounded by columnist Ellen Goodman:
It's taken decades to publicly adopt the new definition of death to include brain death. We are still trying to educate family members to donate organs of those who have literally died. Are we now going to ask society to approve the scything of organs from those who are soon-to-be-dead, virtually dead, as good as dead? It is simply asking too much. 
Many of the most thoughtful critics of the Loma Linda procedure keenly appreciate the fragility of the public's confidence in the entire organ transplant program. How ironic it would be if in tampering with the definition of death to allow removal of organs from anencephalic infants, ethicists and transplant surgeons kill the goose that transplants the golden egg.
The authors wish to thank Richard Doerflinger and Joseph Piccione for many helpful comments and suggestions in the preparation of this essay.
 Joyce Peabody, interview with Leslie Bond, Loma Linda, CA, 22 April 1988. Transcript, National Right to Life News, Washington, DC.
 D. Alan Shewmon, "Caution in the Definition and Diagnosis of Infant Brain Death," in John F. Monagle and David C. Thomasma, eds., Medical Ethics: A Guide for Health Professionals (Rockville, MD: Aspen, 1988), 38-57.
 Dorothy Lipovenko, "Malformed Infants Upset MD's Theories," Toronto Globe and Mail, May 2, 1988, A8.
 Peabody, interview, 22 April 1988.
 "Loma Linda IEC Pioneers Criteria to Use Anencephalic Organ Donors," Medical Ethics Advisor 4:4 (April 1988), 53.
 Michael R. Harrison and Gilbert Meilander, "The Anencephalic Newborn as Organ Donor," Hastings Center Report 16:2 (April 1986), 21-23.
 Arthur L. Caplan, "Measuring Brain Function Difficult Because There's No Brain to Measure," Medical Ethics Advisor 3:12 (December 1987), 164.
 Diane Gianelli, "Pediatric Surgeon Back in the Spotlight--With Controversial New Donor," American Medical News (November 5, 1987), 80.
 Michael R. Harrison, interview with Leslie Bond, San Francisco, CA, 23 April 1988. Transcript, National Right to Life News, Washington, DC.
 Richard Schaefer, telephone interview with Dave Andrusko, 6 July 1988.
 Alexander M. Capron, "Anencephalic Donors: Separate the Dead from the Dying," Hastings Center Report 17:1 (February 1987), 5-9.
 Arthur L. Caplan, "Should Foetuses or Infants Be Utilized As Organ Donors," Bioethics 1:2 (April 1987), 119-140.
 James W. Walters, telephone interview with Leslie Bond, 29 October 1987.
 John C. McDonald, "Too Many Organs Going to Waste," Shreveport Times, April 3, 1988, 8B.
 Frank Chervenak et al., "When is Termination of Pregnancy During the Third Trimester Morally Justified?," New England Journal of Medicine 310:8 (February 23, 1984), 501-504.
 Gianelli, "Pediatric Surgeon."
 Mary B. Mahowald, Jerry Silver, Robert A. Ratcheson, "The Ethical Options in Transplanting Fetal Tissue," Hastings Center Report 17:1 (February 1987), 10-15.
 Susan M. Wolf, "The Persistent Problem of PVS," Hastings Center Report 18:1 (February/March 1988), 26.
 Daniel Wikler, "Not Dead, Not Dying? Ethical Categories and Persistent Vegetative State," Hastings Center Report 18:1 (February/March 1988), 41-47 at 45.
 Ellen Goodman, "Giving Birth to an Organ Donor," Star/Tribune, December 12, 1987, A17.
J.C. Willke is a physician and President of the National Right to Life Committee. Dave Andrusko is editor of the National Right to Life News.
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|Title Annotation:||life-support for anencephalic infants|
|Author:||Willke, J. C.; Andrusko, Dave|
|Publication:||The Hastings Center Report|
|Date:||Oct 1, 1988|
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