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Maternal rights, fetal harms.

A twenty-two-year-old patient at the county obstetrics clinic received upsetting news when an ultrasound exam revealed that her fetus had hydrocephalus, an abnormal accumulation of cerebrospinal fluid within the ventricles of the brain. The fluid build-up can raise intracranial pressure and enlarge the head, making normal passage of the fetus through the birth canal impossible. If persistently high, the pressure destroys white matter and causes mental retardation. Serial ultrasounds showed progressive build-up of fluid and moderate head enlargement. In addition, a lumbar meningomyelocele was identified, but ultrasound exams revealed no other anomalies. Viral cultures of amniotic fluid and karyotyping revealed no infection or other anomalies. The gestational age of the fetus is thirty-four weeks, and tests show that the fetal lungs are mature.

Placement of a ventriculo-amniotic shunt in utero would be possible, but this approach has had limited success. Given mature lungs, the balance of risks and benefits for the fetus favors prompt delivery and postnatal shunting if needed, rather than the still-experimental intrauterine shunting.

A decision is needed concerning the method of delivery. Prompt delivery, by cesarean section if needed to avoid trauma to the fetal head, would permit assessment of the infant's condition and provision of treatments, including ventriculo-peritoneal shunt insertion if necessary. Recent reports suggest that among hydrocephalic fetuses for whom full treatment efforts are provided approximately 60 percent survive. Among survivors, about half are mentally retarded in varying degrees. This approach, however, exposes the woman to the various risks associated with surgical delivery, including infection, hemorrhage sufficient to require transfusion, and iatrogenic injury to the urinary tract.

An alternative approach would minimize the physical risks to the woman by avoiding cesarean section, permitting the pregnancy to continue until labor begins spontaneously. If the fetal head is too large to pass through the pelvis, a needle can be inserted into the cranium and cerebrospinal fluid extracted to reduce head size. However, this cephalocentesis almost always results in stillbirth or neonatal death within a few days, due to the rapid decompression of the head or needle-induced hemorrhage.

What recommendation, if any, should the physician make to the woman? Should he seek a court order for surgical delivery if the woman refuses cesarean section?

The questions raised are of great concern to obstetricians detecting prenatal hydrocephalus, a common malformation. Cephalocentesis is ethically problematic for several reasons. First, if one knowingly performs an act that is highly likely to cause the death of another, and if the act causes the death, then it seems reasonable to say that one has killed the other. Even if the purpose is to prevent harm to the woman, and fetal death is not desired, the action would still be killing. Second, because the fetus is near term it deserves serious respect; causing death would then be a grave matter, regardless of whether it is the death of a neonate or of a fetus. Third, it can be argued that physicians have special role-related obligations to avoid causing death. Fourth, it is hardly ever plausible to claim that causing its death is in the interests of the hydrocephalic fetus, and certainly not in the case at hand.

Nevertheless, it can be argued that it is ethical for the obstetrician to decompress the fetal head when anomalies incompatible with long-term survival have been detected (such as trisomies 13 or 18), or there are anomalies that are not necessarily incompatible with long-term survival, but are highly likely to result in death or severe handicap (such as holoprosencephaly).

In the present case there are no detected anomalies that are certain or highly likely to cause death, and the physician should strive to avoid killing. If the woman prefers cesarean section, her choice should be strongly supported. If she appears to favor vaginal delivery or asks for a recommendation, the physician should recommend delivery that is atraumatic for the fetus. It is acceptable to attempt to persuade the mother to assume risks, within limits, for the sake of the fetus.

A firm refusal of cesarean section by the mother would create a dilemma. Such a case would challenge those who maintain that forced maternal treatment is never justified, for the likely alternative is the physician's causing the death of a neonate or fetus with serious moral standing. It has been argued that forced maternal treatment should always be avoided in part because of its adverse consequences, which could include brutalization of the physicians and other caregivers involved, weakening of the liberty of pregnant women generally, and disruption of physician-patient relationship. If these effects can occur, might not causing the deaths of infants or fetuses near term also have adverse consequences? A similar brutalizing effect might occur. Respect for life might generally be weakened. Patients might become less secure in their belief that physicians do not kill one patient for the sake of another, and this could adversely affect therapeutic relationships. Weighing the pros and cons in such cases involves a complex judgment.

A resolution of the dilemma exists if we consider the likelihood that cesarean section will benefit the fetus. Forced cesarean section would be justifiable only if, among other factors, there is a very high probability that it will significantly promote the fetus's well-being. Forcing the mother to undergo such an invasive procedure when there is a great chance that it will not significantly benefit the fetus seems unwarranted. Even in the present case there is too much uncertainty about survival to claim that there is a very high probability that cesarean section will make such a contribution. Our ability to detect anomalies in utero is limited, and associated life-threatening conditions still often go unnoted. As our technology improves and we are better able both to diagnose and to care for handicapped newborns, arguments for forced intervention may become more persuasive. At present, however, we cannot predict that survival of a hydrocephalic fetus is very highly probable. It is justifiable, then, for the physician to perform cephalocentesis if the woman firmly states an informed, voluntary preference for vaginal delivery.

Carson Strong is associate professor of human values and ethics, College of Medicine, University of Tennessee, Memphis, Tenn.

Two broad issues are addressed by this case: (1) What is the ethically justified treatment recommendation to make to this pregnant woman? (2) Procedurally, who should decide and how should the decision be carried out?

Several medical facts are pertinent. A fetus with mature lungs are thirty-four weeks' gestation has hydrocephalus with "moderate head enlargement" and a lumber meningomyelocele of unknown extent. Neither anomaly is incompatible with survival. Indeed, the 60 percent survival rate given for hydrocephalus appears quite low. Morbidity varies widely with these combined anomalies once treated; shunting problems, infection, lower extremity motor and sensory deficits, and neurogenic bladder disturbances are possible. Normal IQ levels are relatively common for individuals with hydrocephalus secondary to meningomyelocele. In sum, this child-to-be is not at clear risk of either death or of severe cognitive/developmental deficits. Given the current state of technology this fetus is clearly "viable," having an excellent chance of being successfully delivered, surgically treated, and surviving.

Though not clearly indicated, we might assume that this woman desires this pregnancy, has some commitment to the fetus at least as a child-to-be, and is influenced in her decisionmaking by some consideration for the fetus and the fetus's health. This is a reasonable assumption given the advanced state of pregnancy and the physical intrusiveness she has accepted to this point. Given the high percentage of cesarian sections performed in this country--25 percent of all births--it is also quite possible that this method of delivery has been broached as a possibility in any case.

Due to the viability of the fetus, the potential for a relatively "good" fetal outcome, and a reasonable assumption of some level of commitment to the fetus, a recommendation for cesarean section to maximize fetal outcome appears ethically sound. Such a recommendation would incorporate supportive counseling about the anomalies diagnosed as well as the increased risks to the woman of the procedure. These risks are apparently medically "reasonable" risks as cesarean sections are regularly recommended by the medical team and accepted by expectant parents in order to promote the health and safety of the woman and fetus.

One might also propose a slightly different alternative. Depending on the actual meaning of "moderate head enlargement," induction of labor now with the hope of vaginal delivery might be possible to promote fetal outcome and minimize any risk to the woman. The physician would inform the woman that every attempt at vaginal delivery would be made, but that a cesarean section would be resorted to should there be a determination of risk to the woman or fetus. The mother would thus need to agree to the cesarean section as an acceptable option prior to induction of labor.

If this pregnant woman is hesitant about any possibility of cesarean section, one might determine whether her desire to await spontaneous vaginal delivery and cephalocentesis is motivated primarily by (1) the perceived risks of cesarean section to her own health, or (2) her desire not to have to deliver and make caretaking decisions about an affected child. The woman's concerns are real in either case but would be interpreted differently by the ethical concept of double effect. In the first case the woman desires to avoid self-harm and does not primarily intend the death of the fetus or newborn. Here the burden is on the medical team to make sure that the woman is fully informed about the true risk of the procedure and the anticipated fetal or newborn death by cephalocentesis. In the second case a morally objectionable effect--the death of the fetus or newborn--is intended and is the means to the morally acceptable end of respecting the woman's autonomy and avoiding any increased risk of harm to her. An objective assessment of the risks of cesarean section as weighed against some "claim" to respect for the fetus and thus the promotion of a good fetal outcome supports the position of giving this fetus a chance.

Though judicial precedents do not ethics make, the clear intention of the Roe v. Wade decision is to allow some protection of the state's interest in preserving viable fetal life. This interest is outweighed if the life or health of the pregnant woman is in danger. Yet the woman is not the sole judge of when her health is endangered. Such a decision is, rather, based on much medical information and experience. Just as there are some increased risks with a cesarean section, the continuation of the pregnancy entails risks (such as risk of a ruptured uterus as fetal head size increases). Such increased risks should be assessed by the woman in conjunction with the medical team.

No woman gives up her rights when she becomes pregnant, but there is a sense in which her rights and concurrent responsibilities are enlarged. Having accepted this pregnancy to the thirty-fourth week, she must carefully consider what effects her decisions have on herself, her fetus, and her relationship to other significant people in her life. An ethics of responsibility evolves which suggests that the "self" deserving of respect in autonomous decisionmaking has been enlarged in some meaningful ways.

Given all of this "reasonable" discussion, what should be the medical team's response in the event this pregnant woman still refuses any possibility of a timely cesarean section? Given the potential for a relatively good fetal outcome, cephalocentesis, which leads inevitably to fetal or neonatal death, is difficult to defend. Should this fetus have had anencephaly or perhaps a trisomy condition that anticipated infant death, the ethical interest is promoting a good fetal outcome would carry little weight against the desire to respect the woman's wishes and to maximizes her own good. But the current case justifies some respect for the fetus that the direct harm of cephalocentesis does not permit. Respect for the woman's wishes to avoid the risks associated with a cesarean section (if needed) should not lead to the positive obligation of a physician to conduct a procedure at the point of live delivery that will lead to the death of the fetus at birth or of the infant shortly after. In this situation respect for autonomy is not without limits. The woman is not reduced to a "fetal container" merely because other interests are recognized.

In the current legal/judicial atmosphere, a physician who believed that a cesarean section might be necessary would be unwise not to seek a court order to support this decisions. However, the adversarial nature of the court system makes this a less than desirable body for intervention into the decision. The idea of forcing a woman to undergo any procedure against her will is ethically repugnant and the gross instrument of a public policy that required such intervention in every instance is odious. The ethics committee as an avenue for communication may be a better intermediary process to encourage consensus between the woman and medical team as the decisionmakers in the case. Without such consensus, the physician who would not perform cephalocentesis has two options: (1) assis in finding the woman another physician who could accept the woman's wishes, or (2) be compelled to obtain a court order and perform the cesarean section in order to give the fetus a chance and not allow the woman to die in vaginal delivery. Neither respect for individual autonomy nor a desire for maintaining the integrity of the physician-patient relationship calls for health care givers to abandon their personal or professional values.

Kathy Kinlaw is associate director, Emory University Center for Ethics in Public Policy and the Professions, Atlanta, Ga.
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Title Annotation:case study and commentaries on treatment of prenatal hydrocephalus and the ethics of cephalocentesis
Author:Strong, Carson; Kinlaw, Kathy
Publication:The Hastings Center Report
Date:May 1, 1991
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