Fr. Benedict Ashley - Anencephaly
MORAL PRINCIPLES CONCERNING INFANTS WITH ANENCEPHALY
Observations on the Document
Fr Benedict Ashley, O.P.
BCD Document Staff Commentary
Anencephaly is a distressing condition of infants whose brains have failed to develop during gestation beyond a very rudimentary stage. Although this condition is relatively rare, recent medical advances raise serious questions about the care of such children: Are infants with anencephaly persons? Were they never persons? If once they were, are they now "brain-dead"?1 Even if they are persons with human rights, may they not be prematurely delivered in order better to insure the rights of their mothers, since at best their lives will be very brief? Since they will soon die, may their organs be removed before death so as to be in their best condition for transplantation to save another's life? Because these urgent questions involve important ethical principles whose erosion in medical practice can have wide consequences, the U.S. National Conference of Catholic Bishops' Committee on Doctrine has issued the concise statement, Moral Principles Concerning Infants with Anencephaly. The present commentary strives to elaborate on the important issues discussed in that statement.
1. Is the Church Interfering Between a Woman and her Physician
In recent years the Catholic Church has issued many documents in advocacy of the dignity and rights of persons, including those who are powerless and disabled, especially the most helpless of all, those who are unborn and newly born. The Second Vatican Council declared that the Church does not seek to impose its beliefs on anyone, but takes seriously the responsibility to share with the faithful arid with all peoples the loving wisdom of Jesus Christ.2 Confirmed in faith in Jesus Christ by centuries of experience in caring for all of humanity, the Church has the duty to proclaim his teaching in the public forum. According to the Second Vatican Council "Every threat to human dignity and life must necessarily be felt in the Church's very heart, it cannot but affect her at the core of her faith in the redemptive incarnation of the Son of God, and engage her in her mission of proclaiming the Gospel of life in all the world and to every creature" (cf. Mk 16:15).3
Pope John Paul II has frequently called the attention of the world to the sinister growth of the "culture of death" shockingly manifest in our century by the Holocaust and other instances of genocide, the threat of nuclear annihilation, and the pollution of the global environment.4 These disasters are symptomatic of an increasing blindness to the dignity of persons, all of whom, not because of some special qualities, but simply because they are members of our human species, have a right to life and to the opportunity to live that life to its full. Jesus Christ showed us that every human being is created by a loving god who empowers human parents to be his cooperators in the wonderful formation of the human body, for which he himself directly creates a spiritual soul.5 Each person, regardless of his or her medical condition, is a unique masterpiece of the divine art, and is an irreplaceable gift to the human community which it has the responsibility to cherish.
While in the past the biological origin of the individual was hidden in the obscurity of the womb, modern embryology makes clear that a unique, human, personal organism comes into existence at the very moment conception is completed when a new, and unique combination of genetic materials begins to determine the individual's wonderful development, organic differentiation and functional maturity.6 It has also become clear that this unique physical organism does not cease to be personal until its primary organ, the total brain on which its specifically human capacities and activities depend, has completely and permanently ceased to function.7 Christians hope for the resurrection of the body after death for immortal life in Jesus Christ (1 Cor 15:1-58). Yet even if one does not share this "living hope" (1 Pt 1:3), this earthly life remains for each person the indispensable condition of all other goods and therefore the first of all human rights.8
Though the origin of each unique person at conception is known, its destiny remains shrouded in mystery. Why is it that some live many years, while others perish in the womb or suffer early death? Modern biology points out the complexity of the human organism and hence its liability to chance disruptions of its normal self-development. Modern psychology and social science also show how much this normal self-development depends on a good community and environment. Modern medicine seeks to overcome these disruptive factors, and has accomplished much, but much still needs to be done.
The Church believes it has further light to cast on this mystery of the brevity of human life. On the basis of God's Word it teaches that God made his creation "very good" (Gn 1:31) and designed it to enable humankind, the summit of the visible universe, to know and seek eternal life with him. But we have abused our own God-given powers of intelligence and free choice and have distorted God's creation by the violence, poverty and pollution which we tend to blame on him. Yet in his mercy. God through his Son. Jesus Christ, has restored to us the power of grace by which we can overcome every evil we have brought upon ourselves and each other (Rom 8:18-23). Thus through medical science and art, if used well, we will eventually understand the causes of the anencephalic condition, be able to prevent it, and perhaps even repair some of the defects it causes. Even now we are empowered to aid the victims of evils which are at present inevitable but which can become the opportunities for our loving care. In such efforts we become cooperators with a loving God. who to honour us ordinarily prefers to do through us what otherwise he could directly do, and sometimes does, through miraculous interventions.
Therefore, the Catholic Church is grateful for and supportive of the efforts of the medical profession.9 But also, following the example of Jesus Christ in his compassion for the powerless and the suffering, it seeks to be an advocate for the neglected members of society, and first of all for their right to live.10 From its long experience it recognizes the dilemmas that arise when the rights of one person seem to conflict with those of another, notably, for example, the rights of a pregnant woman with the rights of her unborn child. It may, of course, appear that the woman in defence of her own dignity must terminate the life of her child for whom she believes she cannot provide proper development in a society that gives her little aid. It is tragic indeed to think that any woman whose very gifts as a woman make her especially sensitive to a child's needs should ever be left to the temptation to destroy her unborn child without the community and especially the Church seeking to find a way to help her out of this dilemma.
It is also a sad paradox that today so many people who courageously fight for women's rights are so driven by the indifference of society that they have come to believe they must defend a woman's "right to choose" without regard to a child's "right to live". This is to encourage a woman to destroy her own integrity as a woman by choosing to destroy her child. Even the woman who is pregnant through no choice of her own but through male violence can best preserve her violated dignity and integrity by mercifully preserving her innocent child and thus demonstrating beyond all question her own dignity and integrity.
Current discussion of human rights sometimes exhibits the dangerous error of supposing that the rights of persons depend not on the simple fact of their humanity, but on their degree of "quality of life", intelligence, health, productivity or other capacities which may unfortunately be impaired.
"As far as the right to life is concerned, every innocent human being, there are no privileges or exceptions for anyone. It makes no difference whether one is absolutely equal to all others....Before the moral norm which prohibits the direct taking of the life of an innocent human being, there are no privileges or exceptions for anyone. It makes no difference whether one is the master of the world or 'the poorest of the poor' on the face of the earth. Before the demands of morality we are all absolutely equal".11
Because this advocacy for the dignity and rights of every human person is a grave duty for the Church, Pope John Paul II, joined by all the Bishops of the Catholic Church, speaking "in season and out of season" (2 Tm 4:2), ceaselessly preaches the right to life. Hence, Pope John Paul II has felt it necessary to give to this teaching the full force of his moral authority, not indeed by the declaration of a new dogma of the Church, but by declaring in the most explicit terms that Jesus Christ and, in his name, the Catholic Church, indeed the whole Christian Tradition, has always taught as an essential element of the Christian faith this right to life of every human person. Hence John Paul II has declared: "By the authority which Christ conferred upon Peter and his Successors, in communion with the Bishops - who on various occasions have condemned abortion and who in the aforementioned consultation, albeit dispersed throughout the world, have shown unanimous agreement concerning the doctrine - I declare that direct abortion, that is, abortion willed as an end or as a means, always constitutes a grave moral disorder, since it is the deliberate killing of an innocent human being. This doctrine is based upon the natural law and upon the written word of God, is transmitted by the Church's Tradition, and taught by the ordinary and universal Magisterium".12
Pope John Paul II's declaration that it is certain the Scriptures and the Tradition of the Church have always13 condemned the direct destruction of the unborn person must remove any doubt on the part of Catholics that abortion objectively is always a grave sin. Moreover, it places this truth in the context of God's loving care of his children in which he has called us all to cooperate. "No circumstance, no purpose, no law whatsoever can ever make licit an act which is intrinsically illicit, since it is contrary to the Law of God which is written in every human heart, knowable by reason itself, and proclaimed by the Church".14
The necessity to defend every human life, therefore, is not only a tenet of the Catholic faith, but a truth knowable by every responsible human being, whatever their religious faith or moral convictions. The Catholic Church, in concurrence with many other conscientious voices, speaks out clearly in opposition to the confused and misleading efforts of some to obscure this plain truth. This is not interference with the medical profession or its clients but an aid to patients' responsible decisions which necessarily involve not only medical information but also sound ethics. While ethics committees are a highly desirable service in health-care facilities, in this matter as in other ethical issues, their decisions must be based on true principles, and cannot be justified if contrary to these principles, they approve exceptions to norms that admit of no exception because they condemn intrinsically evil acts, such as the deliberate destruction of innocent human life.
2. Is the Infant with Anencephaly a Person with Rights?
Anencephaly is medically defined as an incurable, fatal congenital malformation characterized by the absence of the cranial vault, with cerebral hemispheres completely missing or reduced to small masses attached to the base of the skull".15 Such infants ordinarily have many other serious physical anomalies. The incidence of anencephaly in infants born live in the United States is about 0.3 per 1,000 births, but this rate is falling, perhaps due to vitamin supplementation during pregnancy. About 44 per cent of live-born anencephalic infants die within the first day, 5-8 per cent are alive after a week, and 1 per cent are alive after 3 months.16 In cases of prolonged survival the diagnosis of anencephaly is suspect. The majority of anencephaly cases can be diagnosed as early as 16-18 weeks gestation, thus raising the questions to which Moral Principles Concerning Infants with Anencephaly has responded: whether or not an induction of delivery should be undertaken immediately, delayed until after "viability", or if the pregnancy should be allowed to go to term.
In the controversy over abortion, questions have often been raised about the "hominization" or "individuation" of the embryo or foetus in its early stages. As already noted, in conformity to current embryology, magisterial documents now affirm that human life begins at conception.17 But, since there is some evidence that anencephaly in some cases may have a genetic cause or predisposition, may it not be that this genetic defect is so radical that, at the very point of conception, the organism so affected never receives a human soul? Thus the false pregnancy producing a "hydatidiform mole" is known to be the result of a failure of the process of conception itself with the result that the normal sequence of development is never initiated.
In anencephaly, however, normal development takes place up to a critical point of organic differentiation. It is more comparable to such cases as the "thalidomide babies" who because of chemical interference at a critical point in their development failed to develop normal limbs, but many of whom have reached adulthood, and who are certainly persons from conception. Anencephaly belongs to the class of physical defects in which for various causes, including possibly some genetic predisposition, the neural tube fails to close.18 Some cases, however, are now known to be due to easily preventable vitamin deficiencies. Thus there is no sufficient reason to doubt that the anencephalic infant began life as a person.
But is it possible that the child with only a rudimentary brain is in fact "brain-dead" and therefore not a person, but a "living corpse" in whom only residual life remains? We now know that it is possible by artificial supports to maintain for a time physiological functions in a brain-dead cadaver. It must be remembered, however, that in determining death it is ethically obligatory to give personal life the benefit of any reasonable doubt. We must be morally certain of death before we cease to care for a living body having human appearance. Although it might be argued that infants with anencephaly, because they often die in the womb, or once out of the womb will surely die, especially if not given aggressive life supports, that they are already actually dying. But there is no certitude that the infant with anencephaly who exhibits physiological life in the womb or afterwards is in fact dead. The standard definition of "brain-death" based on our present state of knowledge requires that to certify human death, we must be certain that the total brain be dead. Infants with anencephaly, even when they totally lack the cerebral hemispheres, still may have a brain stem or other rudimentary brain tissue, and thus their whole brain is not dead. Autopsies on these infants have led to the conclusion that "although these AN [anencephalic] infants were not necessarily brain-dead, and may even have had an intact brain-stem, they were capable of little more than most elemental and primitive reflexes".19 Furthermore, the fact that the infant with anencephaly faces early death does not prove it is a non-person, any more than if it were a dying adult.
The conclusion that infants with anencephaly are not brain-dead, however, should not be argued by claiming, as is done by some, that the brain-death definition of death now standard in medical practice is erroneous. Such arguments are based on the well-known fact that the human body can continue to function physiologically with little actual input from the brain. It is contended that the unity of a living human organism is not dependent on the action of any primary organ, such as the brain, but on the interaction of other essential parts of the human body.20 It is not at all clear, however, how a system of many organs can regulate itself so as to act in a unified way without some primary organ that is the principal regulator. The clinical data are much better explained by noting that a complex organism has many levels of organization. Thus in sleep the brain ceases to play so great a role in regulating physiological function as in the waking state, while the lower levels continue to function in relative independence. What is decisive, however, is that without the brain, the higher specifically human functions of thought and will and of voluntary bodily actions cannot take place. Thus total brain-death, with its absolute elimination of even the possibility of specifically human function is the best criterion of human death.
By this criterion the infant with anencephaly is not dead, but is a living person with a profound, although, like a person in the "persistent vegetative state", not total destruction of its primary organ. It is for this reason that if and only if the total brain is dead is a person dead; and since the living child with anencephaly cannot be safely judged to have suffered total brain-death, he or she must be treated as a person with the rights proper to such.
3. The Rights and Care of the Mother of a Child with Anencephaly
The Church is often falsely accused of defending the rights of the child but neglecting the rights of the mother. But to defend women's dignity and equality is also to maintain that women have full responsibility for their own actions. Since, however, as persons we are also by nature social beings, parts of a community, the rights of individuals are correlative to the rights of others. No one has the right to seek their own interests, or make free choices about personal conduct, without responsibility for the rights of others. The same holds true of parents. Their children are persons, not their property, and their rights as persons are not subject to the free choice of their fathers or mothers.
The first right of a mother (and indeed of the father) of a child is to adequate medical care and truthful information about the medical situation so that she can make truly free and informed decisions. A physician has the duty to provide her with full and accurate information about the nature of anencephaly and to advise her to seek the appropriate counseling. It has been argued that pregnancy is a unique case, since the child's life is totally dependent on the mother and thus so conditions her own life that she alone ought to have the free choice without any outside interference to determine whether her child should live or not. This ignores the fact that in most cases her pregnancy is the result of her own free actions, including the risks that she and her partner accepted in engaging in intercourse.
In some tragic cases, pregnancies that result from rape, or what amounts to much the same, create pressuring circumstances which have greatly restrained the mother's freedom of choice. Even in such cases, the child is in no way responsible for the injustice done to the child's mother. Hence, as the only person who can provide the innocent child with what is necessary for the child's very life, the woman, in spite of her victimization, still has the responsibility for that child's life, just as every human being has responsibility for the life even of a stranger if that stranger is helpless and will perish without help. In the Parable of the Good Samaritan (Lk 10:30-37), Jesus taught us that when there is no one else to help another in peril of death, we cannot just "pass by on the other side". Those who claim for a woman "a right of free choice" in this matter must also add that her only ethical choice is to give that care to the child which no one else can give. Even if there is no legal sanction enforcing this responsibility, her own conscience cannot absolve her from it.21
Some seek to justify the sacrifice of the life of a child with anencephaly by arguing that, even if the unborn child can be said to be a person with rights, nevertheless, the rights of the mother, as a fully conscious adult, and having the right of choice with regard to her own body, predominate over those of the child with anencephaly. It is certainly true that for the mother the discovery that her unborn child suffers a grave congenital abnormality can cause immense sorrow. The prospect of carrying the child to term, the inevitable risks of childbirth, the fear of beholding the child's unusual appearance, and the agony of watching the child's inevitable dying are formidable indeed. It is possible that risks to the mother's own physical and psychological health of this continuation of pregnancy may be significant. Furthermore, her ability to care for any of her other children, engage in her usual work or meet financial costs, may be at risk. Finally, she may be under pressure from her physician, husband or family to terminate a pregnancy which can have no happy outcome. Such factors exist also in other kinds of abortion and are the grounds for the usual arguments for "free choice" of abortion. It must also be insisted that the father of the child with anencephaly has an equal responsibility to urge his partner to carry their child to delivery and to support her during the pregnancy, during their child's life and throughout their grieving over the child's death.
Those who argue for the predominance of the parents' rights over those of the child undermine the whole concept of the rights of the person to which they make appeal. Such conflict of rights, between the welfare of the adult woman and of the ailing child, cannot rightly be resolved on the basis of the maturity or of the condition of the child and the maturity of the child's mother, or the infant's chances for survival, or any other consideration, except by the fact that both have a right to live. To deny the equal, rights of the child is to deny the equality of all human beings, with all the consequences of that denial: racism, sexism, elitism, etc.
The psychological and moral challenges posed by these cases are in part at least unavoidable, and the parents of these children require the greatest support in meeting them. But the uncertainties inherent in bearing the child to delivery with the knowledge that the child may be born dead or will die soon after, cannot be greater for a woman who understands the dignity of life or the love owed her child than would be the psychological and moral guilt of being a party to the child's destruction, a burden which must lie on her conscience the rest of her life, and which cannot be removed simply by false reassurances by others that she acted rightly, when the facts cannot be hidden from her conscience nor ever forgotten.22 The mother who fulfils her responsibility to her child by carrying the child to term, can rest in the knowledge that she has done all she can for her baby out of respect for the child's own rights as a human being. She will have the child baptized and may wish to hold her child, soon to enter into eternal life, in her motherly arms, rather than have it destroyed and discarded as without human worth.
Thus one must conclude with Pope John Paul II in The Gospel of Life that, "despite the risks and problems associated with carrying the pregnancy to term, ... it is essential that the reality, life and gift that is the child in the womb not be eclipsed by discussion of dangers. Every child is a 'wonder' and is to be loved in the midst of great tragedy".23
If, however, during the course of a pregnancy, a life-threatening pathology of the mother occurs, it is entirely justified to use appropriate procedures to save the mother's life, even if as an unavoidable side-effect, the child dies. The classical "principle of double effect" recognizes that the woman has a right to defend her own life even if this results in her child's death, provided that the child's death is not the means by which she saves herself. If her life is not threatened, but some lesser risk to her health or well-being, then induction of delivery before "viability" cannot be justified since it is certainly fatal to the child.24 After "viability" early induction is permissible for a proportionate benefit either to mother or child,25 but it should be noted that in current medicine viability is very difficult to define or to determine, especially in the case of the child with anencephaly whose life is tenuous. Such a child can hardly be determined to be "viable" until after delivered, nor is it in any benefited by premature delivery.
It is mistaken to argue that the direct effect of early induction of labour is simply the termination of a pregnancy and not the risk to the child. To terminate a pregnancy even after viability is deliberately to intend to deprive a child of his or her natural right to be protected and nurtured in the womb. This can be justified only if it is a proportionate benefit to the child, as it may be in the future in some cases if an artificial womb is ever invented, but is not the case now. Therefore, Directive 49 of The Ethical and Religious Directives for Catholic Health Care Services of the National Conference of Catholic Bishops (viz., "For a proportionate reason, labour may be induced after the foetus is viable") must be understood in the light of the fact that since prematurity is a grave risk to the child's life, no risk is proportionate to this risk except a similarly grave risk to the mother's life. This cannot be the case unless the mother is suffering from a life-endangering pathology whose treatment requires procedures that may result in the premature expulsion of the child from the womb.
Physicians and other medical professionals can be a great support for the parents struggling with the news that the child for whom they would have had such great hopes suffers from so distressing a condition. While medical professionals must give the parents full and truthful information about the child's diagnosis and prognosis, they do them a grave injustice to suggest abortion, premature induction of delivery except in the situations just cited, or neglect of the newly born child. Nor can they ethically cooperate if she herself chooses such courses of action to the child's detriment.
The recent changes in the U.S. system of health care put heavy pressures on some medical professionals to cooperate in ethically forbidden procedures on the grounds that they are acting under duress. In an Appendix entitled, "The Principles Governing Cooperation", the just cited Ethical and Religious Directives briefly state the criteria for distinguishing ethical from unethical cooperation. When the Appendix states that "immediate material cooperation is wrong, except in some instances of duress", it should be clearly understood that, while it is a significant factor in determining whether cooperation in certain evil activities is legitimate, neither duress, nor any other circumstance or motivation, can ever justify direct participation in an intrinsically wrong action such as the direct killing of the innocent, whether by abortion or any other medical procedure.
4. The Rights and Care of the Child with Anencephaly
Some have argued that since the child with anencephaly cannot live long, early termination of his or her life may save the child from needless suffering. While it is now known that well before delivery, a normal child may have some degree of conscious sensation and therefore be liable to pain, and even after delivery the anencephelic may exhibit signs of pain and discomfort during its brief life, it is more probable that the child with anencephaly has only an imperfect consciousness analogous to that of the human dreaming state.
Nevertheless, whatever a child's true state of consciousness, to kill a child in order to prevent his or her suffering would be active euthanasia, which both the Church and a purely rational ethics condemn.26 Hence it is also false to argue that since many children with anencephaly die in the womb, and almost none survive for long after birth, all children with anencephaly can be regarded as dying, and therefore may be delivered prematurely. Even if it be true that a child with anencephaly once delivered is actually dying, it is never permitted deliberately to intend to hasten any person's death, though it is not obligatory to use means whose only benefit is to prolong suffering and dying.
Yet the conclusion that the child with anencephaly has a right to ordinary care only and his or her caretakers only an obligation to give the child that kind of care, does not answer the question, "What is obligatory ordinary care?". This question has been much debated among Catholic moralists, but must be answered in the light of the principle enunciated in the Declaration on Euthanasia and confirmed in The Gospel of Life that obligatory treatment and care must be judged by the proportion between the benefit to the child and the burden placed on the care-givers. Obviously this principle requires a prudential judgement, and it seems excessively casuistic to try to reduce it to further absolute norms, since the crucial question is "benefit to the person" and "benefit" is not easy to define. Some argue that since human life is so great a good, any care that prolongs life is an infinite benefit. The Catholic moral tradition has, however, always considered physical life, although good in itself, not as absolute but as a good subordinate to the spiritual good of the person. The conclusion is that if any procedure of care or medical treatment cannot enable a person, including the child with anencephaly, to have at least the possibility of performing spiritual acts it is not of significant benefit and cannot be morally obligatory. This conclusion, of course, in no way justifies the deliberate shortening or termination of human life, but only relieves the caretakers from the obligation of forms of treatment or care which they prudently judge to be of no significant benefit to the patient, even if these are urged by medical professionals or others.27 The child with anencephaly, therefore, must be so cared for that he or she is as free of suffering as possible and should be given loving attention, affection and protection so that it will be evident to all that she or he is a child like other children.
For Christian parents it is the greatest consolation that if the child has been delivered alive he or she can be baptized with full dignity and the child's eternal salvation secured and affirmed in a positive manner. While we have a justified hope that all children who come into this world may be saved in Christ through the prayers of their parents and their Church, the assurance of actual baptism is both a clear expression of the care of the Church for all her children and of their membership in the Church for eternity.28 The parents who can look back on this sacred event and know with certitude that their child whose life was so brief now prays for them in heaven and is grateful to them for their care can find peace in their sorrow.
5. Organ Donation from Children with Anencephaly
It has already been noted that the remarkable technique of organ transplantation has raised a question about the child with anencephaly as an organ donor. Organs from foetuses and infants may be especially helpful for transplantation because at early stages of life the physiological factors that may cause a transplant to be rejected by its recipient are not yet fully present. In addition, organs are also subject to rapid deterioration after death. That some physicians are seriously tempted to use living infants with anencephaly as organ donors is evident from the fact that in 1994 so important a professional organization as the Ethical and Judicial Council of the American Medical Association gave the opinion (later retracted) that since the life prognosis of infants with anencephaly is brief, it would be ethical to transplant their organs even though the infants would die as a result.
The donation of organs to another is an act of true charity which has the full support of the Church provided that certain criteria are observed:
(a) Persons may not be killed as a means to obtain organs, either before the removal of the organ, or when its removal kills the donor.
(b) Living donors must give free and informed consent, but must refuse this consent if the donation would put their own life or health to grave risk.
(c) Organs may be taken from the dead, provided due respect is shown the corpse and if adult donors gave permission while living, or lacking this, if their families give consent, if this is required by law for the common good.
Therefore, the infant with anencephaly may never be used as an organ donor until certainly dead, but its corpse may be used immediately after death is certain, with the consent of the parents or their proxies, if this is required by law. Nor should physicians in order to obtain organs be permitted to redefine death arbitrarily.
The issue is complicated by the fact that some parents, grieving over their dying child, sincerely wish to donate the child's organs to save the life of another, and thus bring good out of an unfortunate situation. If they are considering abortion, they even may be motivated to await the normal delivery of the child in order to be of help to another. Nevertheless, it is always and gravely wrong to use an evil means even to a good end, in this case to kill a child by removing his or her organs for transplantation. Such an act, although for a good end, introduces a contradiction into the moral standards of the parents, the medical profession and society. We are what we are by reason of our moral perceptions and decisions and when we contradict sound moral principles we corrupt our own moral integrity and that of our community.
It can be asked, of course, of what benefit is the child's brief life to him or her self or to anyone else? Why must the child be treated as an end in the child's own self, rather than a means to be used for the benefit of others whose hopes are greater? The child's continued physical life may indeed seem to be of little benefit to his or her self, but to respect the child is a great benefit to ourselves and our human community, since it strengthens our commitment to human rights, and our respect for the Creator who in his mysterious but providential wisdom will not let this life be lived in vain. While we ate not required to use disproportionate means in sustaining life for a little longer, because it is the life of a human being, it demands our full respect. Let us remember Jesus' gentle but solemn warning, "See that you do not despise one of those little ones, for I say to you that their angels in heaven always look up on the face of my heavenly Father" (Mt 18:10).
Thus the statement by the Committee on Doctrine of the U.S. National Conference of Catholic Bishops, in conformity with the teaching of the Holy See on the dignity of human life and the evil of abortion and euthanasia, seeks to advocate the right to life of the child with anencephaly, grave as is the child's organic pathology, because the child is a living person. It urges parents, even at the cost of great personal sacrifice. It especially urges the medical profession to give the parents of these children all needed support in this serious obligation. Ordinarily this responsibility is to see that the child has the benefit of a normal gestation before and after "viability". Only when the mother suffers from a life-threatening pathology may the child's life, even after viability, be gravely risked and then only as the indirect effect of the necessary treatment of the mother's pathology. After the child with anencephaly has been delivered alive it must be given whatever care that is to the child's benefit and which manifests respect for the child's dignity as a person. It is not obligatory, however, to give the infant with anencephaly forms of care or treatment whose benefit to the child is not proportionate to the burden to caretakers. When the child's death has certainly occurred, but only then, the child's parents or other proxies may give consent to the immediate removal of the child's organs for transplantation. The purpose of this pastoral statement from the Committee on Doctrine of the U.S. National Catholic Bishops' Conference, therefore, is to apply the authoritative teaching of Pope John Paul II in The Gospel of Life, as well as other documents of the Holy See, to this sorrow-laden situation of the child with anencephaly. It joins the Holy Father in making "a vigorous reaffirmation of the value of human life and its inviolability, and at the same time a pressing appeal addressed to each and every person in the name of God: Respect, protect, love and serve life, every human life! Only in this direction will you find justice, development, true freedom, peace and happiness!".29
1 James Drane, "Anencephaly and the Interruption of Pregnancy: Policy Proposals for HECs", HEC Forum 4 (1992): 103-119 was defended in the same number of the journal by Thomas J. Bole, "The Licitness (According to Roman Catholic Premises) of Inducing the Non-Viable Anencephalic Fetus: Reflection on Prof. Drane's Policy Proposals", pp. 121-133, but on somewhat different grounds, namely, because "the anencephalic is almost unique among members of the biologically human species in lacking the capacity to develop the biological substrate - a functioning neocortex for thinking, or for any kind of conscious experience" and hence "is not, and cannot come to be, a person, it cannot have, or develop so as to have, a rational or spiritual soul" (p. 127). This will be answered later in the text.
2 Vatican Council II, Dignitatis humanae, 7 December 1965, nn. 9-10.
3 Ibid., n. 3
4 The Gospel of Life (Evangelium vitae, hereafter EV) 25 March 1995, nn. 3, 4, 12, 21.
5 Pius XII, Humani generis, 12 August 1950, Paul VI, Credo of the People of God, 30 June 1968; Catechism of the Catholic Church, 1964, n. 366.
6EV, n. 60, citing CDF, Donum vitae, 22 February 1987, I, n. 1.
7 For a discussion of the medical controversies on the definition of death see Benedict Ashley, O.P. and Kevin O'Rourke, O.P., Health Care Ethics: A Theological Approach, 4th edition, (Washington, DC: Georgetown University Press, 1997), pp. 400-404.
8 "The first right of the human person is his/her life. He has other goods and some are more precious, but this one is fundamental - the condition of all the others. It does not belong to society, nor does it belong to public authority in any form to recognize this right for some and not for others", S. Congregation for the Doctrine of the Faith, Declaration on Procured Abortion, 1974. On death and dying see EV, nn. 64-67.
9EV, n. 26, fourth paragraph.
10EV, n. 81: "Human life, God, is sacred and inviolable. For this reason procured abortion euthanasia are absolutely unacceptable. Not only must human life not be taken, but it must be protected by loving concern. The meaning of life is found in giving and receiving love, and in this light human sexuality and procreation reach their true and full significance. Love also gives meaning to suffering and death, despite the mystery which surrounds them, they can become saving events. Respect for life requires that science and technology should always be at the service of man and his integral development. Society as a whole must respect, defend and promote the dignity of every human person, at every moment in and in every condition of that person's life".
11EV, n. 57.
12EV, n. 62.
13 Though, due to the lack of embryological information now available, it was sometimes debated whether early abortion was in the strict sense murder, it was always held by the Church that it was gravely sinful. See John T. Noon, Jr., "An Almost Absolute Value in History", in The Morality of Abortion: Legal and Historical Perspectives, J. T. Noonan, ed. (Cambridge, MA: Harvard University Press, 1970) pp. 1-59, and John Connery, S.J., Abortion: The Development of the Roman Catholic Perspective (Chicago: Loyola University Press, 1977).
14EV, n. 62.
15 Medical Task Force on Anencephaly, "The Infant with Anencephaly", The New England Journalof Medicine 322, 10 (8 March 1990): pp. 669-674.
16 Michael Melnick and Ntinos C. Myrianthopoulos, "Studies in Neural Tube Defects II:: Pathologic Findings in a Prospectively Collected Series of Anencephalics", American Journal of Medical Genetics 26 (1987): 797-810, reported that in a series of 36 anencephalic infants of the 19 born alive nearly 1/3 died within 15 minutes after birth, 2/3 within 3 hours, and only 3 survived to 48 hours.
17 See note 5 above. See Albert Moraczewski, O.P., "Personhood Entry and Exist" in R.E. Smith, ed., The Twenty-Fifth Anniversary of Vatican II: A Look and a Look Ahead, (Braintree, MA: The Pope John Center, 1990); with B. Ashley, O.P., "Is the Biological Subject of Human Rights Present at Conception", in Peter J. Cataldo and A.S. Moraczewski, eds., The Fetal Tissue Issue: Medical and Ethical Aspects (same place and publisher, 1994), pp. 33-59.
18 See note 16.
19 Melnick and Myrianthopoulos, op. cit., note 16 above, p. 801 concluded as regards the infants autopsied: "Although these AN infants were not necessarily brain-dead, and may even have had an intact brain stem, they were capable of little more than most elemental and primitive reflexes". Thus without an autopsy, i.e., until after the infant's death it would be difficult or impossible to ascertain the full extent of the pathology.
20 This case is argued by D. Alan Shewmon, "Recovery from 'BrainDeath': A neurologist's Apologia", The Linacre Quarterly 64 (February, 1997): 30-96. The clinical data is of importance but the philosophical interpretation not convincing.
21EV, n. 18, insists that the right to life for every human being, including the unborn and newly born, can never be merely a matter of privacy but necessarily affects the public, common good.
22 Susan Iles and Dennis Gath, "Psychiatric Outcome of Termination of Pregnancy for Fetal Abnormality", Psychological Medicine 23 (1993): 407-413, report that women who have a termination of pregnancy for foetal abnormality suffer "psychiatric morbidity" ... "four to five times higher than in the general population of women". Unfortunately they did not control this with data on women who carried the abnormal child to term.
23EV, 25 March 1995.
24The Ethical and Religious Directives for Catholic Health Care Services (1994), National Conference of Catholic Bishops, Washington, D.C., "Directive 45: Abortion (that is, the directly intended termination of pregnancy before viability or the directly intended destruction of a viable foetus) is never permitted".
25The Ethical and Religious Directives for Catholic Health Care Services (1994), National Conference of Catholic Bishops, Washington, D.C., "Directive 47: 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". See Peter Cataldo, "Anencephaly and Survivability", Ethics and Medics 18 (November, 1993): 3-4 and Kevin O'Rourke, O.P., The Linacre Quarterly, 63 (August, 1996): pp. 55-59.
26EV, n. 65.
27 Some object that the later document, EV, speaks of refusing treatment only "when death is clearly imminent and inevitable" before repeating the principle concerning procedures in which benefit is proportionate to burdens. If EV had intended this to be the only case in which burdens outweigh benefits it would probably have said so. Probably only this exemplary case is mentioned in order to suggest great prudence in a decision lest abuses arise. Similar caution was shown in the NCCB's Committee on Doctrine statement.
28 See Sacred Congregation for the Sacraments and Divine Worship, Instruction on Infant Baptism (Pastoralis actio), 20 October 1980.
29EV, n. 5.
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