Address correspondence to Mary Z. Pelias, PhD, JD, Dept. of Biometry and Genetics, Louisiana State University, Medical Center, 1901 Perdido Street, New Orleans, LA 70112-1393. Ph: 504-568-6151, Fax: 504-568-8500.

Recent advances in medical and surgical technologies now permit successful organ transplantations for persons whose lives are in peril because of failure of one or more of their own vital organs. While organ transplantations have brought dramatic benefits to many grateful persons, the use of these procedures has also generated intense debate about ethical and legal propriety of removing organs from individuals who still have some vital functions or who are being maintained on machines. One very troublesome area of vital organ transplantation is the use of anencephalic infants as sources of these organs. Although both the proponents and opponents of this sad but potentially life-saving application of organ transplantation argue their positions with sincerity, their arguments sometimes lack clarity.

Anencephalics lack recognizable cerebral hemispheres as well as overlying cranium and scalp11. The vital functions of live-born anencephalic infants are controlled by their brain stems, and they do show some reflexive responses during their brief lives5. They usually have adequate cardiorespiratory activity to permit survival for at least a short time. Because anencephaly is usually lethal within hours or days after birth, anencephalics fall into a class of infants who are born dying; they are permanently unconscious, with no hope of growth, mental development, cognition, or interaction with others.

The Uniform Determination of Death Act

A cornerstone in the debate about anencephalics is the Uniform Determination of Death Act (UDDA)20, which has been adopted in every state in response to the dilemmas generated by organ transplantation technology2. This legislation defines death as irreversible cessation of cardiorespiratory activity or irreversible cessation of all brain activity, including activity of the brain stem. Authors who oppose the use of anencephalics as organ donors note that anencephalics do have brain stem activity and are, indeed,biologically alive. On the other hand, authors who support the use of anencephalics as organ donors have suggested that the UDDA could be modified to include anencephalic infants as a third category of the legally dead, so that healthy vital organs may be removed from these infants before the decline or cessation of vital functions18. Rewriting the UDDA to define anencephalics as legally dead would not, however, alter the fact that these infants are alive. No change of language would change the biological status of these infants or the fact that anencephalics are human infants, born alive, but born dying6. To create such a legal fiction would be nothing more than an error in semantics and, as Mearns et al 9 note, would carry the ominous tones of legalized social experiments that have occurred in the past.

The critical concerns of diagnosis

The suggestion to modify the UDDA has elicited heated debate, including the comments by Mearns et al in this journal. These authors, as well as most others, acknowledge that most anencephalics are aborted, or are stillborn, or are otherwise unsuitable for consideration as organ donors2,10. However, the fact that very few anencephalics could be considered as potential organ donors does not nullify their potential value in organ transplantation. Nor does the paucity of potential recipients nullify the value of anencephalics as potential donors. Numbers should not be an issue. Concerns about the accuracy of diagnosis are, however, especially relevant, because of the broad spectrum of neural tube defects and the association of anencephaly with syndromes that preclude transplant donation. To avoid the possible perils of the slippery slope, careful and conservative diagnosis of isolated anencephaly must adhere to a strict medical standard10,11,14,16. Mearns et al. also urge caution because of our meager knowledge of the dying process, although this lack of knowledge does not change the consistent observation of the deaths of anencephalics within a short time after birth.

New aplications of old values

Mearns et al argue further that allowing donations of vital organs from anencephalics would undermine regulations that have emerged from time-honored cultural values and priorities. These values and priorities presumably include respect for persons and an abhorrence of killing. Among physicians, of paramount value is the Hippocratic admonition to avoid doing harm. In recent times, however, we have found a need to examine our new technological powers in the light of older values as we try to reconcile the discrepancies between the two. Indeed, the UDDA was written in response to a need to define precisely what we believed we always knew about death. We are not abandoning our time-honored values as much as we are still trying to find a harmony between older ethics and newly developed powers in the medical arts. The question of using anencephalics as vital organ donors focuses on the specific ethical conflict between the utilitarian concept of using one person to benefit another and the Kantian concept of valuing each person as an end in himself, not as a means to another end, such as the well-being of someone else2. Thus far, no one has formulated a satisfactory philosophical compromise that would settle this basic ethical conflict.

A classification based on brain function

Another fundamental conundrum with anencephalics is the value of the higher brain as a measure of personhood. Some authors have suggested that anencephalics be assigned the legal status of non-persons, on the theory that severe neurological impairment is incompatible with personhood7,16,17. As non-persons, these infants would then be available for organ removalømuch as one would remove porcine or primate organs, with no moral obligation to consider the implications of shortening the life of the donor. This suggestion, undoubtedly well intended, also side-steps the fact that anencephalics are living human infants, who become persons in the eyes of the law at the moment of live birth. The use of neurological impairment as a measure of personhood creates the difficult dilemma of basing a categorical social classification on the anatomic continuum of anterior neural tube defectsøa dilemma that so far has defied resolution.

The parents" decision

What is remarkably absent from the debate about anencephalics as organ donors is thoughtful consideration of the parents of these dying infants. Perhaps we should first acknowledge the tragedy that strikes the family when an anencephalic infant is born. How the parents cope with the situation may range from requests for aggressive life support to requests for minimal, if any, intervention. Now that some anencephalics may become suitable organ donors, some parents are faced with another option, and for some parents the prospect of donating the organs of their dying infant offers solace in a futile and bleak circumstanceøa chance, as some parents have stated, to give some import to the brief life of their infant8. In these situations, the grief of the parents is profound, and their decisions are made in an atmosphere that is charged with complex emotions. Yet our society has consistently stood behind parents as the primary decision makers for their own children3,12,15,21. With the expanding power of medical technology to manipulate death, parents are increasingly faced with the terrible decisions of letting their dying children dieødecisions that only the parents will have to live with for the rest of their lives. What may be appropriate in the arduous circumstances of the birth of an anencephalic infant would be thoughtful and careful counseling with the parents about their options in coping with an event that is, at best, immensely difficult. This counseling should acknowledge the grief of the parents but should also include careful discussion about the implications of organ donation, including the possibility that the parents could experience residual guilt long after the event16. If the parents elect to donate their dying infant"s organs, and if this decision means that the infant"s short life is shortened by hours, the parents may find some comfort and peace in knowing that their infant"s life was not utterly futile. If the parents are firm in their decision to donate their infant"s organs, then physicians will be in a position to assist in realizing some good from the hopeless circumstances that surround the anencephalic infant. We would do well to listen carefully to the parents of Theresa Ann8.

Definition of eligible donors

Articles on anencephalic organ donations, in both the medical and the legal literature, indicate clearly that a consensus on these issues is unlikely. The Supreme Court of Florida speculated about whether any right or wrong would ever be found8. One study noted astonishing disparities in the definition of death from one state to the next, even though all states have adopted the UDDA4. Other studies have tentatively considered amending the Uniform Anatomical Gift Act19 to permit the parents of anencephalics to donate the vital organs of their infants before cessation of all vital functions, but with great caution about the slippery slope16. Such an amendment would require careful construction, with provisions for protecting infants with other neural tube defects, individuals in persistent vegetative states, inmates on death row, and any other persons who might be considered as potential organ donors. Ultimately, we must deal with anencephalics as human infants, not as legal concepts1. We must honor the values of the parents and the value of the infants as we try to realize some good from their short, sad lives.

References

1. Annas GJ: From Canada with love: Anencephalic newborns as organ donors? Hastings Cent Rep 17:36-38 1987.

2. Botkin JR: Anencephalic infants as organ donors. Pediatrics 82:250-259 1988.

3. Bowen v. American Hospital Association, 476 U.S. 610 (1986).

4. Bryne PA, Evers JC, Nilges RG: Anencephaly - organ transplantation? Iss Law Med 9:23-33 1993.

5. Bryne PA, Nilges RG: The brain stem in brain death: A critical review. Iss Law Med 9:3-21 1993.

6. Capron AM: Anencephalic donors: separate the dead from the dying. Hastings Cent Rep 17:5-9 1987.

7. Fletcher J: Indicators of humanhood: a tentative profile of man. Hastings Cent Rep 2(5):1-4 1972.

8. In re T.A.C.P., 609 So.2d 588 (Fla. 1992).

9. Mearns EA, Lebel RR, Gold RL, et al: Anencephalics as organ donors. The Fetus 8500-19-20, 1994.

10. Medearis DN, Holmes LB: On the use of anencephalic infants as organ donors. Ne Engl J Med 321:391-393, 1989.

11. Medical Task Force on Anencephaly The infant with anencephaly. Ne Engl J Med 322:669-74 1990.

12. Meyer v. Nebraska, 262 U.S. 390, 1923.

13. Moore KL, Persaud TV: The Developing Human: Clinically Oriented Embryology, 2nd edition, Philadelphia: WB Saunders Company,

14. Peabody JL, Emery JR, Aswal S: Experience with anencephalic infants as prospective organ donors. Ne Engl J Med 321:344-350, 1989.

15. Pierce v. Society of Sisters, 268 U.S. 510, 1925.

16. Shewmon DA, Capron AM, Peacock WJ, et al: The use of anencephalic infants as organ sources: A critique. JAMA 261:1773-81, 1989.

17. Singer P: Sanctity of life or quality of life? Pediatrics 72:128-129, 1983.

18. Truog RD, Fletcher JC: Anencephalic newborns: Can organs be transplanted before brain death? Ne Engl J Med 321:388-91, 1989.

19. Unif. Anatomical Gift Act §1, 8A U.L.A. 5 Suppl. 1987.

20. Unif. Determination of Death Act §1, 12 U.L.A. 340 Suppl. 1991.

21. Wisconsin v. Yoder, 406 U.S. 205, 1972.