ANENCEPHALIC INFANTS AND THEIR CARE
Staff of the Committee on Doctrine
National Conference of Catholic Bishops (U.S.)
The Gospel of Life
The safeguarding of human life is trust sacred to the heart of the Church. In his 1995 Encyclical Evangelium vitae, Pope John Paul II reaffirms this conviction by emphasizing the incomparable worth of every human person. The Pope affirms that "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 tile Son of God, and engage her in her mission of proclaiming the Gospel of Life in all the world and to every creature..." (n. 3).
The Encyclical states that this proclamation is "especially pressing [today]because of the extraordinary increase and gravity of threats to the life of individuals and peoples, especially where life is weak and defenceless" (n. 3). The Holy Father identifies "unborn children in particular" whose fundamental right to life is being trampled upon (n. 5).
The Gospel of Life demands unwavering respect for the inherent dignity of babies born with disabilities or illnesses.
The Pope condemns the "conspiracy against life" (n. 17) which endeavours, among other things, to "eliminate malformed babies" and those with disabilities (n. 15). The Holy Father reaffirms the Church's teaching that "the direct and voluntary killing of an innocent human being is always gravely immoral" (n. 57), as is evidenced in "selective abortion" aimed at preventing "the birth of children affected by various types" of physiologic anomalies (n. 63). The Pope calls for the fostering of "a contemplative outlook", one which recognizes "every individual as a 'wonder'" (n. 83). We must all develop a posture which makes "unconditional respect for human life the foundation of a renewed society" (n. 77), enabling us "to see in every human face the face of Christ" (n. 81). With this outlook in mind, we "accept [life] as a gift, discovering in all things the reflection of the Creator and seeing in every person his living image" (n. 83).
This perspective does not falter when confronted with those who are sick, suffering, marginalized or dying. Rather, we are challenged to find meaning ... precisely in these circumstances" (n. 83) and perceive in the face of every individual an encounter with God.
The Anencephalic Infant
In these critical times, we bring this Gospel of Life to the care of infants diagnosed with anencephaly. Anencephaly is 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. In most cases, the cause of the neural defect is unknown. As a result of the neural tube defect, the anencephalic infant does not develop a functioning cerebral cortex. The degree to which this defect affects the infant's cognitive-affective functioning is in dispute.
In the United States the incidence of anencephaly is approximately 0.3 per 1,000 births. While misdiagnosis of the condition is possible, diagnosis in utero is now virtually certain, based upon the detection of elevated levels of maternal serum alpha-foetoprotein and the use of high resolution ultrasonography. While most anencephalic infants are stillborn, those infants who are born alive normally die within a few hours or days of birth. Some anencephalic infants have been known to live for months and even years.
The Gospel of Life challenges us to reverence all human life and never compromise this posture even in the difficult cases where infants sustain various types of physiologic anomalies. The Bishops of the United States have recently reaffirmed this challenge in Faithful for Life: "At the very heart of our respect for human life is a special and persistent advocacy for those who depend on others for survival itself" (p. 3).
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" (n. I:1).
Moral and Pastoral Reflections
The Church's constant and unwavering moral tradition regarding the respect for life from conception to natural death provides a firm foundation on which to reflect upon the appropriate medical and pastoral care of anencephalic infants and their families.
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 (The Ethical and Religious Directives for Catholic Health Care Services, n. 27). 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" (p. 10).
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 infants. 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" (Part II: Introduction).
Parents of an anencephalic infant often experience a sense of failure, of anger over dashed hopes, and of fear of the unknown. Within this experience of immense personal suffering, it is important that they find within the Church a ready embrace and heartfelt assurance that they did not fail in their role as parents. The death of a child is indeed one of the most difficult losses to mourn, and file Church Should be sensitive to this in providing for the Christian burial of deceased anencephalic infants. Pastoral care personnel should make every effort to collaborate in the development and implementation of comprehensive prenatal and postnatal bereavement programmes that will assist families in dealing with the loss, emptiness and sorrow which are ever pervasive in these circumstances.
Second, it is to be considered a serious violation of the rights of the infant in utero to induce delivery prior to viability. 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. 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 (n. 45).
Some physicians and health-care providers advocate the delivery of previable anencephalic infants in order to eliminate the anxiety, fear and trauma especially on the part of the mother. The question must be asked, "What are we here and now purposely doing when we directly cause the delivery of all anencephalic infant before viability? What is the purpose of this action"? The Church evaluates this action as a directly intended abortion since the sole immediate effect of the act is the certain death of the foetus. The Ethical and Religious Directives are clear on this point: "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 ..." (n. 45).
Consequently, delivery before viability of an anencephalic infant cannot be justified by the use of the principle of double effect, as the delivery of the infant in this case constitutes a direct killing of the foetus. For, as the Ethical and Religious Directives teach: "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 safety postponed until the unborn child is viable, even if they will result in the death of the unborn child" (n. 47).
Because this intervention in the pregnancy of an anencephalic infant results in a direct killing of an innocent human being, the only suitable and ethical response is to allow the infant to reach viability, to baptize the infant immediately upon birth (Ethical and Religious Directives, n. 17), and to allow the parents to hold the infant as he or she is allowed to die. Labour may be induced after the foetus is viable, for a proportionate reason (n. 49).
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. The Declaration on Euthanasia (1980) teaches: "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" (n. IV).
The Ethical and Religious Directives confirm this same point: "The inherent dignity of the human person must be respected and protected regardless of the nature of the person's health problem.... The respect for human dignity extends to all persons who are served by Catholic health care" (n. 23).
In other words, the fundamental reason for limiting care (e.g., not using antibiotic therapy to combat infection) is that, for example, counteracting in infection and thus briefly prolonging the infant's life will not benefit the infant.
The Ethical and Religious Directives are instructive: "A person may forgo extraordinary or disproportionate means of preserving life. 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" (n. 57).
Finally, some attention is due here to the question of the use of anencephalic infants as organ donors. The Ethical and Religious Directives allow for the donation of organs (nn. 63-65) but warn that "such organs should not be removed until it has been medically determined that the patient has died.... The use Of tissue or organs from an infant may be permitted after death has been determined and with the informed consent of the parents or guardians".
The Holy Father likewise condemns tile removal of vital organs "without respecting objective and adequate criteria which verify the death of the donor", calling such attempts a "furtive" but real form of "euthanasia" (Evangelium vitae n. 15). In the United States, regulations do not permit organ donation from anencephalic infants because brain death criteria are not fulfilled.
A controversy surrounds attempts to override this "brain death" criterion. Some desire to revise the Uniform Anatomical Gift Act to allow removal of organs from live patients; others want to include anencephaly as a variant of "brain dead"; while others would hope to define anencephalic infants as non-human. The Church evaluates these approaches as misguided and reaffirms its teaching that: "The determination of death should be made by the physician or competent medical authority in accordance with responsible and commonly accepted scientific criteria" (Ethical and Religious Directives, n. 62).
The Gospel of Life calls each of us to uphold human life in all of its stages and in all of its strengths and weaknesses. The affirmation found in the Declaration on Procured Abortion (1974) is a fitting conclusion to these reflections: "The first right of the human person is his 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: all discrimination is evil.... It is not recognition by another that constitutes this right. This right is antecedent to its recognition; it demands recognition and it is strictly unjust to refuse it" (n. 11).
Weekly Edition in English
23 September 1998, page 7
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