Update

Maintain the "Dead Donor Rule"

by Robert D. Orr, MD

Some rules are so important they should never be broken. The "dead donor rule" is one of them. Since the beginning of organ transplantation there has been an unwritten, but inviolate rule that organs will not be removed from an individual before death; not even if the family of the "donor" requests it; not even if the donor requests it. The reason for this rigid rule is that human life has intrinsic value, and respect for the dignity of each life is a natural component of the human condition. Killing one individual for the benefit of another has never been acceptable.

The AMA Council on Ethical and Judicial Affairs (CEJA) recently announced that in June 1994 it changed its mind. In 1988 it had reaffirmed the importance of the dead donor rule and clearly stated that organs should not be retrieved from a child born with anencephaly before the child met standard criteria for death. It now believes that "it is ethically acceptable to transplant the organs of anencephalic neonates even before the neonates die." It proposes this as a "limited exception to the general standard because of the fact that the infant has never experienced, and will never experience, consciousness." The CEJA statement claims "a compelling social interest." What has changed from 1988? Is there new physiologic information or a new method of moral reasoning?

CEJA attempts to dispel concerns about accuracy of diagnosis, slippery slope concerns (future use of organs from living demented or permanently unconscious patients, etc.), and preservation of public trust in the organ procurement system. Their arguments are the same as were available in 1988 and are still not persuasive. However, its most flawed argument is when it tries to justify breaking the dead donor rule which it agrees is a "critical principle" which must be "vigorously maintained." It states that the purposes of this rule are to (1) protect the interests of persons from whom organs are taken, (2) provide reassurance to other individuals, and (3) preserve the value of respect for life. It claims that infants born with anencephaly have no interests. It claims that persons with consciousness will not have to worry about having their organs removed before death because they can never become anencephalic. It paradoxically claims that "respect for the essential worth of life is an absolute value in the sense that it exists irrespective of a person's quality of life. However, it is not an absolute value in the sense of overriding all other values." Now wait just a minute! Is it absolute, or is it relative? Perhaps this is a new (and confusing) method of moral reasoning after all! The final affront to logic is when CEJA states "the primary argument in favor of permitting parental donation is an argument based on the value of respect for life."

The CEJA has no new information, no new arguments; just a convoluted and illogical attempt to justify breaking a rule against the absolute value of human life irrespective of its quality. The dead donor rule should not be broken.

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Stairway to Hell

by Earl Aagaard, PhD

In 1988, the AMA Council on Ethical and Judicial Affairs affirmed that even profoundly damaged humans have a right to be affirmed as ends, and not means; at least after their birth. Now, in 1995, the Council recommends we abandon that bit of wisdom, and add newborn anencephalic babies to the list of those who will not be so protected.

Since this decision is not based on an absolute, such as the sanctity of all human life, it can offer us no logical stopping place. The current reassurance that less severely damaged children and those in persistent vegetative states will not be used as organ donors does not represent stability. Whenever the majority view among "experts in medicine and ethics" changes, and the need for organs overcomes our squeamishness, the AMA Council will again want to be consistent, and the list will grow. Who will be next? Condemned prisoners? The severely retarded? We can only wait and see.

The Council is eager to assure us that this is not a "slippery slope" situation, and in this they are correct. A slippery slope implies a lack of control; a sudden, unplanned, and accidental descent. Plainly that is not what is going on. What we are seeing is a careful, step by step descent down a long stairway. We can, if we choose, stop and examine our surroundings, including where we have been and the destination toward which we journey. And what awaits us in the abyss is exactly what has awaited every society that divides the human species into "protectable" and "not protectable" categories. What awaits us is a world in which the strong prey upon the weak, using the bodies of the powerless for any purpose considered sufficiently important by those with the power to impose their will.

Will we learn from history, or insist on repeating it here in the "land of the free"? Surely the last fifty years have made it abundantly clear that taking deliberate, conscious steps down our stairway is not fundamentally different from sliding down the slippery slope. Oh yes, the trip is a little more pleasant, as we soothe ourselves with sophistic reasoning about caring and altruism. But the only real difference is that it will take a little longer to find ourselves in Hell.

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Let Parents Choose

by James Walters, PhD

Quite uncharacteristically, the normally staid American Medical Association boldly leads the debate on anencephalic neonates as organ sources. Notice of the AMA's positive position made the front page of the New York Times. That paper quoted critic George Annas, a noted health attorney at Boston University, who labels the idea "horrendous," citing anencephalics as "live human beings."

Yes, anencephalic newborns are "alive" under current law, but that is precisely the issue. Should the current "whole brain death" standard be applied to anencephalics? The AMA argues that anencephalic newborns should be exceptions to current law, thus allowing procurement of "organs from anencephalic neonates before the neonates die."

I am in essential sympathy with the AMA's position for reasons cited in the report and for reasons I have argued elsewhere. However, I object to talk of taking vital organs from live humans and thus killing them. The "dead donor" rule is a good one and it need not be sacrificed to accomplish the AMA report's laudable goals.

I propose that we allow parents to choose among circumscribed options. Because society is so divided over the moral status of anencephalic infants, parents should be able to choose among three definitions of death for their anencephalic newborn: (a) cardiorespiratory death, (b) whole brain death, or (c) higher brain death.

Who would choose which option? For example, some orthodox Jews may opt for cardiorespiratory death (a legal alternative currently available in New Jersey). Most parents would likely accept society's current definition of death, whole brain death, as applicable to their newborn. Other parents, who view possession of higher brain function as that which bestows upon individuals unique moral status,would choose cerebral death and thereby make direct organ donation possible.

The circumscribed options approach requires certain restrictions because parental autonomy is not and should never be absolute. The essential parameters of this third alternative concern present and potential cerebral functioning: only anencephalic or other newborns that are equally and absolutely devoid of the possibility of cerebral life are candidates. Put in other words, no infant that has any possibility of attaining higher brain function could allowably be defined as dead. There are several reasons supporting the circumscribed option approach:

Parents already make vital decisions in regard to their offspring in deciding for or against abortion--within legally delineated limits. If the possibility of making such a decision in regard to healthy fetuses is permissible, it should be permissible for parents of higher brain-absent newborns to view their tragic newborns as legally dead.

The basis for deciding the use or nonuse of an anencephalic newborn's organs is rooted in "deep" philosophy, yea, religion. This transplant dilemma has been created by modern medical science,and in this uncharted territory a certain morality will hold sway, even if by default. In areas of such fundamental personal dispute, it is proper in this land of civil and religious liberty to allow parents to make decisions within reasonable limits.

There are hundreds of infants who are ill or dying and potentially could be benefited. Consider only the need for neonatal hearts. Each year in the United States several hundred infants are born afflictedwith hypoplastic left-heart syndrome, a universally fatal condition until late successes in infant heart surgery, particularly in neonatal heart transplantation.

Finally, a decision to donate the organs of one's anencephalic newborn is a most personal decision arrived at through deeply conflicted emotions. There is mounting evidence that many parents want great good for another couple and their baby to come from theirown personal trauma. Nothing can take away the despair of the parents of an anencephalic newborn, but neonatal transplantation nowmakes possible a partial win win situation out of what has always been a total lose lose tragedy.

Allowing parents to choose among circumscribed options may appear to some as too aggressive--even permissive--a step. Such a perception is unwarranted when one realizes that modern medicine is literally forcing an increasingly heterogeneous society to go back to its various fundamental views of life and death in response. But then medical progress has long forced society to rethink its ideas of life and death.

(This piece is based on a section of Walters' forthcoming What Is A Person? Brain Function and Moral Status, University of Illinois Press.)

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