Update
CEJA Reverses its Stance on Using Anencephalic Neonates as Live Organ
Donors
Theodore D. Masek, MD Theodore D. Masek, a physician who practices radiation oncology in Rancho Mirage, California, is the head of the Ethics Committee at Eisenhower Medical Center and is active in the House of Delegates of the American Medical Association. He and his wife Julie have three teenage children.
In December 1994, the Council on Ethical and Judicial Affairs (CEJA) issued its report "The Use of Anencephalic Neonates as Organ Donors."1 These guidelines constituted a radical change in CEJA's original opinion concerning anencephalics, and declared that it was ethically permissible to take the organs from living anencephalic infants without a pronouncement of death, provi- ded that parents initiate the discussion and that other transplantation standards of care are retained. The contentious reception of many AMA doctors to this informational report led to CEJA holding forums at the House of Delegates meetings allowing AMA members and guests to testify on impending ethical issues to be reviewed by the Council.
On June 19, 1995 at the annual meeting of the House of Delegates, this new forum was held. The entire council heard testimony concerning ethical issues on anencephalic neonate organ donors. Because of this hearing process and upon receiving further information from the scientific community, a revised report entitled "The Use of Anencephalic Neonates as Organ Donors--Reconsideration" was issued in December 1995. The report stated:
Based on input from a number of persons and entities, the Council on Ethical and Judicial Affairs is suspending its latest opinion on anencephalic neonates as organ donors pending further scientific information. While the Council believes that its initial report and opinion were well-reasoned discussions of an important ethical issue, the Council also recognizes that its conclusions cannot be implemented until greater understanding of consciousness in anencephaly is achieved.2
This left the original opinion, 2.162 in place, which reads:
Physicians may provide anencephalic infants with ventilator assistance and other medical therapies that are necessary to sustain organ perfusion and viability until such time as a determination of death can be made in accordance with accepted medical standards and relevant law. Retrieval and transplantation of the organs of anencephalic infants are ethically permissible only after such determination of death is made, and only in accordance with the Council's guidelines for the transplantation.3
A few months after publication of the AMA's new guidelines a case arose in which parents and physicians agreed to donation of the organs of an anencephalic infant diagnosed in utero. The transplant team was willing to follow the new AMA recommendations. They agreed to harvest the organs after a declartion of death by the pediatrician, and would not question the legality of that declaration.
At that point the hospital's CEO asked the HEC to convene for a clinical ethics consultation.
The HEC concluded that organs taken following a legally deviant pronouncement of death, or taken without pronouncement of death were "arguably morally permissible" but highly illegal. Even though the HEC felt that the actions recommended by CEJA were arguably ethically permissible, they did not recommend complying with the AMA's statement, but suggested that all parties involved should separately or collectively seek legal advice.
Because of legal considerations and the fact that the parents changed their minds about proceeding on the AMA's recommendation, the baby was not sacrificed. The anencephalic infant was pronounced dead by observed irreversible loss of respiratory and cardiac function after being held by his parents. Heart valves were harvested.
I praise CEJA's reversal of its December l994 opinion allowing removal of organs from an anencephalic infant without being declared dead. However, the multiple revisions and the events following these reports are quite troubling. One could discuss this case in terms of the role of CEJA in issuing non-reviewed guidelines that have drastic effects on people's lives, or question who, if anyone, should review or have input into the CEJA or other organizations that propose moral guidelines.
Should legal considerations deter hospital ethics committees from recommending morally justifiable actions? Do hospital ethics committees have a duty to act as conscientious objectors in such cases? At what risk? Clearly most understand the retrieval of viable organs from non-dead donors as killing. What is the role of CEJA, the Courts, the medical profession and bioethics community in radically changing legal and social convention? Who has the moral authority to devaluate any group?
Others may argue that we retreated from a more just and intelligent point of view that would only increase the good in our society. The fact that the debate was so fierce, and points of view so strongly held demonstrates that the ethical issues are deep and truly difficult. CEJA had the courage to recognize this fact and I applaud them. Until these difficult issues become clear, if we must err, let us err in favor of including and not exempting groups from the realm of humanity.
REFERENCES
1. American Medical Association, Council on Ethical and Judicial Affairs, "The Use of Anencephalic Neonates as Organ Donors," Journal of the American Medical Association, 273 (1995): 1614-18.
2. Council on Ethical and Judicial Affairs, "The Use of Anencephalic Neonates as Organ Donors--Reconsideration." Council on Ethical and Judicial Affairs Report l-I-95.
3. Council on Ethical and Judicial Affairs of the American Medical Society, Code of Medical Ethics Current Options (Chicago: American Medical Association, 1992).
4. J. E. Reagan, "Ethics Consultation: Anencephaly and Organ Donation," Journal of Law, Medicine and Ethics 233 (1996), 398-400.
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