Ethical options concerning delivery of Anencephalic infants

1. Thomas Boles asserts that the anencephalic infant is not a person because it will never possess cognitive-affective functions. Thus, it may be removed from the womb as soon as a diagnosis of anencephaly has been determined. O’Rourke, K., ed. (2000) A Primer for Health Care Ethics, Second ed.Washington DC: Georgetown University Press., 313-314

To be fully human does not mean that all human functions must be actual, or that there must be actual physical capacities for human functions. Rather, it means that an individual by reason of being a member of the human species possesses a nature that includes the potential for actual operations, even though this potential may never be actualized due to some anomaly. Potential is a real aspect of an individual human being in addition to any actual functions and operations of the individual. The anencephalic infant, despite its severely debilitated condition and brevity of postnatal life, is the subject of human rights and has a human dignity equal to all other human beings. Cataldo, P. (1997). The NCCB on Anencephaly. Ethics & Medics, Vol. 22, No. 1

2. James Drane states that the anencephalic infant is a human person but may be delivered as soon as it is viable – about 25 weeks – because it will not develop any further as a human person. O’Rourke, K., ed. (2000) A Primer for Health Care Ethics, Second ed.Washington DC: Georgetown University Press., 313-314

"Abortion (that is, the directly intended termination of pregnancy before viability or the directly intended destruction of a viable foetus) is never permitted. Every procedure whose sole immediate effect is the termination of pregnancy before viability is an abortion, which, in its moral context, includes the interval between conception and implantation of the embryo".    Given that the anencephalic infant is an innocent human being, the commonly recommended option of elective abortion is intrinsically evil and morally unacceptable under all circumstances. The statement points out that the right to life of the infant is equal to that of the mother. The fact that the life of a child suffering from anencephaly will probably be brief cannot excuse directly causing death before "viability" or gravely endangering the child's life after "viability" as a result of the complications of prematurity. L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Moral Principles Concerning Infants with Anencephaly”, September 23, 1998.

3. The natural purpose of pregnancy is to allow the fetus to develop into a person who will be able to perform human acts and pursue the purpose of life. At the time of diagnosis of anencephaly, it is clear that the purpose of the pregnancy is useless. Hence, the pregnancy may be terminated by removing the fetus and the surrounding matter from the womb of the mother. This argument is based on the opinion that because of their apparent lack of cognitive function and in view of the probable brevity of their lives, these infants are not the subject of human rights or at least have lives of less meaning or purpose than others O’Rourke, K., ed. (2000) A Primer for Health Care Ethics, Second ed.Washington DC: Georgetown University Press., 313-314

Doubts about the human dignity of the anencephalic infant, have no solid ground, and the benefit of any doubt must be in the child's favour. As a general rule, conditions of the human body, regardless of severity, in no way compromise human dignity or human rights. According to the well-established teaching of the Catholic Church, the rights of a mother and her unborn child deserve equal protection because they are based on the dignity of the human person whatever the condition of that person. Consequently, it can never be morally justified directly to cause the death of an innocent person no matter the age or condition of that person. The Church recognizes anencephalic infants as truly human and worthy of the unconditional respect and reverence befitting every person. The 1987 Vatican Instruction On Respect for Human Life in Its Origin and on the Dignity of Procreation affirms this point: "The human being is to be respected and treated as a person from the moment of conception; and therefore from that same moment his rights as a person must be recognized, among which in the first place is the inviolable right of every human being to life" L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Moral Principles Concerning Infants with Anencephaly”, September 23, 1998.

4. The womb of the pregnant woman may be considered a form of life support, similar to any medical device. Just as life-prolonging therapy such as a respirator may be removed to allow a person to die of an underlying pathology that cannot be circumvented, the anencephalic infant may be removed from its life-support, the womb. O’Rourke, K., ed. (2000) A Primer for Health Care Ethics, Second ed.Washington DC: Georgetown University Press., 313-314

The mother’s womb cannot be regarded as a useless life support system that may be terminated because in general there is no moral obligation to provide useless treatment. Given the inestimable human dignity of the anencephalic child, the uterine environment in which he or she lives is not useless since it is supporting nothing other than a fully human individual. Cataldo, P. (1997). The NCCB on Anencephaly. Ethics & Medics, Vol. 22, No. 1

5. To avoid spiritual or emotional pain to the mother or father, when the diagnosis is made that the fetus will be anencephalic, the pregnancy may be terminated. O’Rourke, K., ed. (2000) A Primer for Health Care Ethics, Second ed.Washington DC: Georgetown University Press., 313-314

“For a proportionate reason, labor may be induced after the fetus is viable.” The psychological state of the mother does not qualify as a proportionate reason for terminating the life of the infant by inducing labor either before or after viability. The emotional trauma of the mother is in response to the condition of anencephaly, but the statement shows that the act of terminating the pregnancy is in itself directed at the infant not the mother: “ Anencephaly is not a pathology of the mother, but of the child, and terminating her pregnancy cannot be a treatment of a pathology she does not have.” Cataldo, P. (1997). The NCCB on Anencephaly. Ethics & Medics, Vol. 22, No. 1

The profound and personal suffering of the parents of an anencephalic child gives us cause for concern and calls for compassionate pastoral and medical care as the parents prepare for the pain and emptiness that the certain death of their newborn child will bring. The mother who carries to term a child who will soon die deserves our every possible support. Bringing the pregnancy to term, allowing optimal opportunity for baptism, and the opportunity for the mother and father to be with the child are all important steps toward bringing closure to the ordeal of the parents. Parents can benefit from bereavement programs or psychological counseling. Catholic health care institutions would do well to offer these services to parents of anencephalic children. Cataldo, P. (1997). The NCCB on Anencephaly. Ethics & Medics, Vol. 22, No. 1

6. Several potential pathologies may accompany a full-term delivery of anencephalic infants. O’Rourke, K., ed. (2000) A Primer for Health Care Ethics, Second ed.Washington DC: Georgetown University Press., 313-314

Early induction of labor for chorioamnionitis, preeclampsia, and H. E Early induction of labor for chorioamnionitis, preeclampsia, and H.E.L.L.P. syndrome, for example, can be morally licit because it directly cures a pathology by evacuating the infected membranes in the case of chorioamnionitis, or the diseased placenta in the other cases, and cannot be safely postponed. "Operations, treatments and medications that have as their direct purpose the cure of a proportionately serious pathological condition of a pregnant woman are permitted when they cannot be safely postponed until the unborn child is viable, even if they will result in the death of the unborn child". Cataldo, P. (1997). The NCCB on Anencephaly. Ethics & Medics, Vol. 22, No. 1

The Principle of the Double Effect Actions that might result in the death of a child are morally permitted only if all of the following conditions are met: (1) treatment is directly therapeutic in response to a serious pathology of the mother or child; (2) the good effect of curing the disease is intended and the bad effect foreseen but unintended; (3) the death of the child is not the means by which the good effect is achieved; and (4) the good of curing the disease is proportionate to the risk of  the bad effect. Fulfillment of all four conditions precludes any act that directly hastens the death of a child. In other words, it is permitted to treat directly a pathology of the mother even when this has the unintended side effect of causing the death of her child, if this pathology left untreated would have life-threatening effects on both mother and child, but it is not permitted to terminate or gravely risk the child's life as a means of treating or protecting the mother. Anencephaly is not a pathology of the mother, but of the child, and terminating her pregnancy cannot be a treatment of a pathology she does not have. Only if the complications of the pregnancy result in a life-threatening pathology of the mother, may the treatment of this pathology be permitted even at a risk to the child, and then only if the child's death is not a means to treating the mother. NCBC Statement On Early Induction Of Labor, March 11, 2004

THE ONLY OPTION Because intervention in the pregnancy of an anencephalic infant seems to result in direct killing of an innocent human being, the only suitable ethical procedure is to allow the pregnancy to go to full term, baptize the infant, and allow the parents to hold it before it dies. O’Rourke, K., ed. (2000) A Primer for Health Care Ethics, Second ed.Washington DC: Georgetown University Press., 313-314

First, once the diagnosis of anencephaly has been made, the parents ought to be given the appropriate medical information to understand the diagnosis, the proposed care, "its risks, side-effects, consequences, and cost; and any reasonable and morally legitimate alternatives" in which to evaluate the situation Pastoral care personnel, with the assistance of a hospital's ethics committee, can be a supportive presence to both the family and medical community in confronting the complex emotions involved in caring for anencephalic infant. Compassionate and understanding care should be given especially to the mother of the infant since the risks and potential for serious complications in her pregnancy are present and labour and delivery can be very difficult. As we affirmed in Faithful for Life, "no one should be blind to the problems that women face in regard to pregnancy“ As our Ethical and Religious Directives for Catholic Health Care Services (1995) affirm, pastoral care truly "assists those in need to experience their own dignity and value, especially when these are obscured by the burdens of illness or the anxiety of imminent death" L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Anencephalic Infants and Their Care”, September 23, 1998.

Second, it is to be considered a serious violation of the rights of the infant in utero to induce delivery prior to viability. The Ethical and Religious Directives remind us that the directly intended termination of a pregnancy before viability constitutes a procured abortion and is never permitted. Viability refers to the point in pregnancy at which the infant will be able to survive outside the womb, generally occurring at about 25 weeks of gestation. L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Anencephalic Infants and Their Care”, September 23, 1998.

Third, even though the anencephalic infant often does not live beyond a few hours or days, he or she is still a member of the human family and must be assured "comfort care" such as warmth, air, sanitary conditions and bonding with the parents if they wish. Care for the dying anencephalic infant must be humane and dignified "A person may forgo extraordinary or disproportionate means of preserving life.” "When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due the sick person in similar cases is not interrupted" Disproportionate means are those that in the patient's judgement do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community" L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Anencephalic Infants and Their Care”, September 23, 1998.