Anencephalic Infants: Means to an End or Ends in Themselves? : Transplant of Their Organs Can Save Lives

This week’s decision of Loma Linda University Medical Center to keep an infant alive artificially so that its organs may be donated to other babies underscores a contemporary dilemma in medical ethics: the appropriateness of treating the dying for the sake of the living.

The issue was first broadly discussed after the heart transplantation of Baby Paul at Loma Linda earlier this year. The heart was procured from a Canadian newborn who suffered from anencephaly--absence of most of the brain. The anencephalic baby, like most newborns with her condition, was dying within her first day of life when the attending physician attached her to a respirator to preserve vital organs.

Is attaching a respirator to an anencephalic baby appropriate if the purpose is solely to benefit another? Yes, but admittedly this answer is in conflict with the widely accepted view that a person is an “end,” in and of herself or himself, not a “means” of achieving another purpose.

But, in the case of the anencephalic, the newborn is incapable of intrinsic self-interest, and it possesses means that can save others’ lives. (Active preservation of vital organs of imminently dying trauma patients is common practice at transplant centers.)

Ideals that support our sense of exalted human worth can have practical limitations. For instance, statisticians at Caltrans, Ford and the Pentagon constantly weigh the costs of saving individual lives against various societal benefits. We have a variety of ends other than the mere biological existence of all individuals, including ourselves.

High value of individual life is vital--but when high-tech medicine sustains merely vegetative human life, the doctrine of infinite worth has surpassed its limits. Permanently comatose patients and anencephalic newborns are examples.

The American Medical Assn.’s judicial council recently ruled that withdrawal of all treatment, including nourishment, from the permanently comatose is ethically permissible. The financial and emotional cost of sustaining individuals who will never regain consciousness (an estimated 10,000 Americans) was deemed too high. The AMA’s landmark decision is appropriate in light of modern medical technology. Sentient, not comatose, human life is an end in itself.

Anencephalics are stillborn about 40% of the time. Of those born alive, 65% will die in the first day of life, and 30% within a week. None live beyond several months. Anencephalics might live longer if aggressive treatment were given. But routinely they are given only “comfort care” because the condition is incompatible with a life of even minimal awareness.

Although the anencephalic is permanently unaware and fatally flawed, a physician who would procure a vital organ from any self-breathing newborn would be open to murder charges. The California Legislature has contemplated changes in state law to allow organ procurement from live anencephalic donors, but there are good--though arguable--reasons to maintain current statutes regarding “whole brain death.” Most notable, on a matter as important as the line that legally separates the living from the dead, broad consensus is necessary for change, and such consensus does not now exist. Even the presidential bioethics commission’s conservative whole-brain death standard has not yet been adopted by all states.

The authorized sacrifice of crying, swallowing, flinching anencephalic infants would produce a thunderous outcry--and perhaps it should. The issue deserves wide public discussion.

However, as the recent baby heart donation demonstrates, it is possible to procure viable organs from brain-dead anencephalics. Furthermore, a strong ethical case can be made for the permissibility--even the obligation--to utilize anencephalic donors if certain basic precautions are taken:

--The imputed human dignity of the anencephalic newborn should be respected. Preservation of our own humanity precludes indefinite attachment of an anencephalic to a respirator for organ preservation. Because a respirator may perpetuate an anencephalic’s life beyond its normal brief span (which medical science cannot predict exactly), a specific length of time--perhaps several days--should be set before turning off a respirator. If brain death had not occurred by the end of that period, the anencephalic should be taken off the respirator and allowed a natural death--meaning that organs would not be used for transplantation.

--No member of the transplant team should be involved in the diagnosis of anencephaly or in the determination of brain death.

--No measures should be taken to hasten the death of the anencephalic, and no organ procurement should proceed until brain death is certified according to normal medical procedures.

--No procurement should be contemplated without the full informed consent of the donor’s legal guardian.

Some medical procedures are necessary, but the topic of anencephalic organ prolongation is essentially an ethical issue, not merely a medical one. The public, finally, must decide whether the organs of the dying may be sustained for saving the living.