Perinatal hospice: a response to partial birth abortion for infants with congenital defects.

• Author: Calhoun, Byron C.

The congressional debate over "partial birth" abortion--or "dilatation and extraction," as termed by its proponents--has received much press.(1) The procedure is performed on late term infants and involves manipulating the infant in the womb to a breech presentation, extracting the infant to the shoulders, trapping the skull, then suctioning out the brain and collapsing the skull before completing removal of the infant's body. Proponents have maintained that most of these were performed for congenital defects or to save the life of the mother.(2) However, in congressional hearings it has been estimated that more than 30,000 may be performed each year, and as many as 80% of these may be "elective."(3) More recently, a well-known abortion provider and activist has acknowledged "that the vast majority of these abortions are performed in the 20-plus week range on healthy fetuses and healthy mothers."(4) This is corroborated by other providers who admit that only a fraction of the thousands of procedures they have performed annually are for fetal anomalies or to save the life of the mother.(5)

However, even if public opinion prevails in banning the procedure for "healthy" pregnancies,(6) congenital defects severe enough to cause death still affect roughly 0.5-1% of all live births,(7) or about 30,000-50,000 births annually in the United States alone. Many of these infants die in utero, and most with severe chromosomal abnormalities (i.e., trisomy 13 or 18) who do survive to birth will die shortly thereafter.(8) Partial birth abortion--like intrauterine lethal injection--is intended to ensure that those infants who survive to late pregnancy will not be born alive,(9) thus avoiding the grim prospect of prolonging suffering at birth when law and society recognize and protect the infant as a person.(10)

While this approach appears to have the benefit of reducing human suffering, we believe it actually threatens the best interests of both mother and infant. The following case will illustrate the hidden dangers of early termination upon detecting fetal anomalies when eager anticipation is abruptly turned into disillusionment and anguish. A twenty-five year old woman, Gravida 3, Para 1, Ab 1, presented at twenty-two weeks of gestation with the question of how to manage the remainder of her pregnancy after sonography revealed findings suggestive of trisomy 13 and the diagnosis was confirmed by amniocentesis. Because hospital policy allowed for termination of pregnancy only if "pregnancy would endanger a woman's life," her obstetrician sought assistance from the hospital ethics committee, which met ad hoc to recommend whether to approve or disapprove termination of the pregnancy. The patient was not present at the meeting. The obstetrician did not know the circumstances of the patient's previous abortion at four weeks of gestation. While there was no evidence of any impending danger to the mother's life, the obstetrician asserted that a decision not to terminate the pregnancy would be detrimental to her mental state. Further discussion unmasked concern that this would be further aggravated if the parents were forced to bear the expense of the procedure at a different institution where health care costs would not be "covered." Notwithstanding the vigorously stated moral and legal concerns of the hospital chaplain and attorney, the committee voted 7 to 2 in favor of administrative approval to terminate the pregnancy.

How much can an obstetrician in such cases "read into" parents' preferences? Would the committee have been justified in seeking more information regarding the previous pregnancies and the parents' feelings about termination? Were the potential adverse consequences of pregnancy termination openly discussed? Did the committee consider all the relevant options? We argue that the committee in this case reached premature closure in the decision and failed to pursue the best interests of either the parents or the fetus.

Providers involved in prenatal and perinatal care should critically evaluate the basis for their own approach to decisionmaking when fetal anomalies are detected and be ready to challenge and correct the potentially flawed reasoning behind early termination. The unexplained suffering in such cases raises key questions of meaning that all too often remain unexplored. We find that these issues are openly addressed by the Old Testament wisdom literature, which warns of the danger of attempts to discover meaning or mitigate suffering when driven by a categorical, unreflective insistence upon the right of self-determination.(11)

Building on this wisdom perspective, we argue that there are significant pitfalls associated with early termination of pregnancy for fetal anomalies. What is needed is an approach to decisionmaking that offers these anguishing parents an opportunity for meaning. Perinatal hospice can provide this opportunity by emphasizing the value of bearing infants afflicted with severe congenital anomalies by treating them as beings conceived with a tangible future, even if destined for a soon death. This approach provides the time and resources needed to realize that future by supporting the family and infant through the ambivalence and anguish associated with bringing the pregnancy to term.

The Flawed Justification for Partial Birth Abortion

The "Right" of Self-Determination

The most prevalent rationale used to justify abortion in general is that of preserving the presumed "right" of self-determination or autonomous choice. The pitfalls of too readily acceding to external preferences in settings fraught with intense emotions, ambiguity, and uncertainty have been previously examined from the wisdom perspective.(12) So pervasive is this presumption in reproductive decisions, however, that it usually goes unchallenged in discussions such as that held by the ethics committee in the case presentation. This was evidenced by the unchallenged allusion to the parents' "preferences." The right of self-determination in reproductive decisions has been enshrined by recent developments in American jurisprudence, especially in the protection of maternal "liberty interests" by the doctrinal cloaks of "privacy" and "pluralism."

Privacy and the Problem of Informed Consent. While Roe found that a pregnant woman's decision to terminate her pregnancy was protected by a right to privacy which the Court derived from the "liberty" provision of the Due Process Clause of the Fourteenth Amendment, this right was not found to be absolute--it was qualified by "the state interests as to protection of health, medical standards, and prenatal life."(13) This holding was reaffirmed by Casey,(14) however, a subtle change in the argument was made necessary by the rapid development of the doctrine of informed consent, which has evolved into a duty required of providers to guarantee true liberty in medical decisions,(15) including abortion.(16) It was eventually recognized that too strict an adherence to the right of privacy would jeopardize a truly informed decision.(17)

Unfortunately a similar level of attention has not been focused on what information a woman bearing a congenitally defective fetus needs to know in order to make an "informed" decision. Studies assessing the predictors of disordered mourning following perinatal loss are fraught with significant methodological weaknesses that limit conclusions about the psychological sequelae in these cases, whether due to stillbirth(18) or to abortion for fetal anomalies.(19) However, the results of recent research in this area have provided cause for concern.

While review of studies of psychological complications within two years of therapeutic abortion reveals a frequency of adverse sequelae averaging only about 10%,(20) a disproportionate number of these were found to be related to therapeutic abortion for fetal abnormalities.(21) A recent case-control study evaluating the grief responses of women who terminated their pregnancies for fetal anomalies concluded that "[w]omen who terminate pregnancies for fetal anomalies experience grief as intense as those who experience spontaneous perinatal loss, and they may require similar clinical management. Diagnosis of a fetal anomaly and subsequent termination may be associated with psychological morbidity."(22) Psychological stress three months after delivery for fetal anomalies has been found to be significantly greater for women whose pregnancies were terminated between twenty-four and thirty-four weeks of gestation than those who delivered after thirty-four weeks.(23) When disordered mourning beyond early grief reactions is studied, it "seems to be related to lack of or problematic social support and significant life stresses in pregnancy.... The marital relationship may be especially important."(24)

These data should be quite arresting to the obstetrician who has assumed that early termination of such pregnancies should result in a relief of anguish comparable to the termination of normal pregnancies in which the child is not wanted.(25) This suggests that in the case we presented earlier, the obstetrician and members of the committee that voted for termination were either unaware of this important information or thought it unnecessary to discuss these risks with the parents in order to satisfy the requisites of fully informed consent. Only recently is the complexity of this problem being recognized.

It is possible that primary care physicians face important structural

barriers to the full utilization of opportunities in the consultation to

assist the process of considered, autonomous decision-making. For

example, time considerations may exert pressure on clinicians to focus

more or less exclusively on the presenting problem and its quick

solution rather than deliberately broadening the consultation to explore

relevant psychosocial aspects of decisions. Because the procedure is so

common, some clinicians may regard...