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Anencephaly and Survivability

This article will focus on the ethics of treatment decisions regarding anencephaly, in particular, the ethics of inducing maternal labor for anencephalics after "viability." If elective abortion is not an ethical option, how should the parents, physician, and counselor regard the choice of inducing labor early?

The Condition of Anencephaly

It is helpful to first present some basic facts about the condition of anencephaly. The Merck Manual (16th Edition, p. 2076) defines anencephaly as the "absence of the cerebral hemispheres," It goes on to say that it is "incompatible with life. . . .Varying portions of the brain-stem and spinal cord may be missing or malformed. No diagnostic or therapeutic efforts are helpful, and these infants either are stillborn or die within a few days." It is thought that the condition is caused at about 3.5 weeks gestation. The diagnosis of anencephaly early in pregnancy is quite accurate by means of ultrasound imaging. It is estimated that 95 percent of the prenatally screened pregnancies diagnosed with anencephaly are electively aborted. The estimated percentages of anencephalics who are stillborn range from 50 to 90 percent (see D. Alan Shewman, M.D., "Anencephaly: Selected Medical Aspects" in Critical Issues in Contemporary Health Care, the Pope John Center, 1989). It s clear from statistics like these that upon detection of anencephaly, the common practice is to abort.

Is the Anencephalic Human?

Any analysis of the ethics of treating the anencephalic is dependent on an answer to a prior question about whether the anencephalic individual is a human being. Determining that answer is the first critical step for establishing whether there are moral obligations towards the anencephalic fetus. The anencephalic is human (as is any human fetus of the same gestational age) by reason of the fact that it possesses the full human genetic complement which is needed for him or her to function as an organism. "To be a human being," writes Albert Moraczewski, O.P., Ph.D., "the individual must be minimally a living organism equipped with the appropriate genes and chromosomes" (Ethics & Medics, March, 1982). Simply possessing the human genome is not sufficient to be a human being, since each cell of the human body has the human genome but is not also a human being. As Fr. Moraczewski has pointed out: "Something else is required. The being generated by humans and possessing human genes must be an organism, that is, a living entity possessing a fundamental or substantial unity reflected in its functioning integrity" Ethics & Medics, November 1981). Given these two basic conditions for human existence, does the severity of the neurologic defect of the anencephalic child render it incapable of functioning as a unified organism? There does not seem to be evidence to prove that the anencephalic does not function as an organism. In fact, the evidence which exists points in the direction of integrated function. The evidence indicates that the anencephalic exhibits typical newborn physical behaviors, possesses brainstem potential for complex integrative activity (as is found in normal newborns), and may also possess a primitive form of awareness (see Shewman, 1989). It would be inaccurate to describe the anencephalic as beginning life as a full human organism only to die quickly in utero with a disunified collection of living tissues remaining. Moreover, the fact that the anencephalic is incapable of rational thought is not evidence of its non-human status, for it does have the potential by virtue of its human nature. But it is a potential that will never be actualized in this life due to its abnormality. The actual lack of a function or an organ in an appropriate organism is not equivalent to a fundamental absence of its potentiality.

Abortion and Inducing Labor

Since the anencephalic is a human being, an elective abortion is absolutely prohibited from a moral standpoint. There can be no reason or circumstance which would be proportionate to the direct killing of this innocent human individual, created in the image of God; not even for the reason of the mother's health, physical or mental. It is often argued that a serious threat to the mother's physical or mental health would be a reason proportionate to the action of inducing labor before viability for an anencephalic pregnancy. Many Catholic theologians who would disagree with this timing might still find induction of labor after viability morally justifiable for the same reasons. The reasoning might follow along these lines; the act of inducing labor after viability is not, in itself, an abortion; the subjective intention of the act is to relieve some serious physical or mental problem, even though the unintended death of the baby is foreseen; the good effect of treating a physical or mental problem are not brought about by means of the death of the baby; securing the physical or mental well-being of the mother is proportionate to the harmful effect of the loss of a life, albeit one whose condition is incompatible with life; and the only way of securing the good effect is concomitant with the bad effect of the baby's probable death.

Early Induction of Labor is not Permissible

There are two serious difficulties with this use of the principle of the double effect. The argument misconstrues the ethical significance of "viability" and it does not recognize the human dignity of the anencephalic baby. The medical concept of viability is defined as that gestational age of the human fetus at which it may survive ex utero, at least with life support. Viability may safely be designated at 17-18 weeks gestation. However, the latest generation of neonatal intensive care technology and steroid medication has pushed back the age of viability to 23-24 weeks gestation although with a much lower rate of survival. Yet it is important to recognize that the ethical significance of viability is not equivalent to the temporal dimension of the concept. Inducing labor does not become morally justifiable simply because the temporal threshhold of viability has been crossed. There must be a reason proportionate to the risks of inducing labor before the pregnancy comes to term. This much the arguments for inducing labor in the anencephalic pregnancy acknowledge; but the ethical significance which attaches to the medical concept of viability lies precisely in the fact that the preborn child can no longer survive in utero and may now be able to survive ex utero. Reaching the benchmark of viability before acting is one more indicator that one's actions are life-conserving (proportionate to the circumstance of in utero non-survivability).

Thus, the ethical use of viability is dependent upon the current condition of the child in utero, not upon the absolute life-expectancy of the child. The threshold of viability makes no ethical difference to the child who can survive in utero, and who also happens to have an anomaly incompatible with life; it is not a warrant for expulsion. Moreover, to point out that the concept of viability becomes meaningless for the anencephalic child simply because the anomaly precludes post-natal survival does not necessarily clear the way for immediate induction of labor. The fact remains that the child who may survive in utero presents no ethically significant reason for an early termination of its uterine life. Not to continue the in utero existence of the anencephalic child would not fulfill the fundamental good of conserving human life.

Unlike some serious physical threat to the anencephalic's survivability in utero, the mental anguish of the mother does not seem to be an ethically proportionate reason to induce labor early. The emotional trauma to the parents, and to the mother in particular, is real and undeniable; but acknowledging the trauma does not thereby create a proportionate reason to end the in utero existence of the anencephalic child. Such a reason makes the worth of the child proportionate to the emotional state of the mother. The worth of the child' life becomes proportionate to the happiness or unhappiness of the mother; but the worth of a human being is never derived from human relationships, from the joy or sadness he or she might bring to others. The dignity of every human being is based solely in his or her human nature, created in the image and likeness of God. A truly proportionate reason for inducing labor early cannot make relative the inherent human dignity of the anencephalic child.

Neither could an appeal be made to the tradition of vehemens horror (intense horror), which is used as a justification for refusing treatment. The mother may be intensely horrified, but this is an ethical justification for the refusal of treatment and not for the initiation of treatment, particularly if it is directed at another human being whose life may be jeopardized thereby. In as a similar way, the permissibility of foregoing or withdrawing ineffective life-support cannot apply to the anencephalic pregnancy. First, the uterine environment cannot rightly be considered "useless life-support" in the case. Second, the foregoing or withdrawal of ineffective treatment is an act different in kind from one which initiates an effective treatment, such as the induction of labor. It is important to note that using the principle of ethically extraordinary means cannot justify the act of inducing labor, but it would be germane to the treatment of the anencephalic baby after birth.

As a Critical Need for Support Programs

Even though abortion or early induction of labor is usually advised, there does not seem to be medical or psychological evidence supporting the validity of these options for the anencephalic pregnancy (see New Eng J of Med., April 30, 1992, 326:18:1217-1219). The ethical, medical, and psychological factors in the anencephalic pregnancy all indicate that Catholic hospitals need to develop and implement comprehensive, prenatal and postnatal bereavement programs for parents experiencing pregnancies with fetal abnormalities incompatible with life. Such programs help the parents cope better emotionally, become strengthened spiritually, and live on with the peace of knowing that their actions supported the human dignity of their child by not interfering with his or her in utero survivability.

NOVEMBER 1993

Peter J. Cataldo, Ph.D.
Director of
Research
Pope
John Center