Biomedical Ethics and Fetal Therapy

7. Management of Pregnancies with Suspected Fetal Anomalies: Clinical Experience and Ethical Issues

7 MANAGEMENT OF PREGNANCIES WITH SUSPECTED FETAL ANOMALIES: CLINICAL EXPERIENCE AND ETHICAL ISSUES David Manchester, William Clewell, Michael Manco-Johnson, Dolores Pretorius, Paul Meier Improved resolution in diagnostic imaging techniques has provided new opportunities for observation and possible therapy of the human fetus. These advances, however, have also raised important ethical issues. In clinical practice, ethical issues frequently arise because of uncertainties. There may be doubts, for example, about the competence of patients, uncertainties about diagnoses, or disagreement about the appropriateness of a particular intervention. In the practice of fetal medicine and surgery, multiple uncertainties appear to be the rule. This chapter will describe the nature of these uncertainties by reviewing the experiences of a multidisciplinary clinical program designed to deal directly with suspected fetal anomalies. The review is intended to provide a phenomenological basis for further discussion of problems posed by the current application of advanced technologies to perinatal medicine. Patient Population The Program in Fetal Medicine and Surgery at University Hospital in Denver, Colorado, is a multidisciplinary unit providing consultation and care for pregnancies complicated by suspected fetal anomalies . It is staffed by ultrasonographers, obstetricians, a pediatrician , a genetics associate, and a medical social worker. Additional consultation from surgical specialists, radiologists, neonatologists, pathologists, and psychiatrists is also available. The program's services include diagnostic evaluation, pregnancy management, and follow-up counselling. Its research goals are to describe the natural history of congenital disorders diagnosed prenatally, to develop and 68 Biomedical Ethics and Fetal Therapy evaluate new approaches to fetal therapy, and to assess the impact of fetal diagnosis and therapy on families. Since its organization in 1982, the program has evaluated more than 170 pregnancies referred for suspected fetal anomalies. For purposes of this discussion, 122 cases in which follow-up has been completed will be considered. Seventy percent of the pregnancies seen by the Program in Fetal Medicine and Surgery were past twenty-four weeks gestation at the time of referral. Mean gestational age was twenty-seven weeks, with a range of twelve to thirty-seven weeks. Table 7-1 lists referring diagnoses. It is important to emphasize that this is a referred, not a screened, population. Thus the prevalence of diagnoses may not reflect their actual rates of occurrence in the general population. Fetal hydrocephalus, for instance, is most common in this sample because it is readily visible on ultrasound and because the Denver program is recognized as having expertise in evaluating this disorder. Table 7-2 describes outcomes for the 122 cases considered. Since the focus here is on ethical issues, clinical details of individual cases will not be given. Mortality is high among pregnancies referred for suspected fetal anomalies. More than half of the pregnancies ended in loss of the conceptus. In survivors, outcome in Table 7-2 is defined in functional terms. Normal survivors include both infants normal at birth and children whose congenital abnormalities have been repaired. For example, an infant born with a gastroschisis, a surgically correctable abdominal wall defect, whose operation has been successful is considered normal. Uncertainties About the Patient Chief among the ethical issues raised by intrauterine diagnosis and therapy are questions which stem from uncertainties about the status of the fetus as a patient. When, for instance, is abortion an option? In Colorado, termination of pregnancy beyond twenty-four weeks gestation is generally precluded because the fetus is likely to be liveborn. When pregnancy is abnormal, however, it is currently unclear under what circumstances the choice to terminate is open to parents and physicians. Discussion of the circumstances under which termination of abnormal pregnancies might be considered has been introduced by Manchester et al. / Management of Pregnancies 69 Chervenak et al. 1 who suggest that when a lethal anomaly has been unequivocally diagnosed pregnancy termination may be an option. Many families seen by our program, however, have asked for termination even though their pregnancies were more advanced than twenty-four weeks and the anomalies suspected were not ordinarily considered lethal. We have presented some of these requests to our ethical advisory committee and expect the debates they have stimulated to continue. It is apparent that the status of the fetus varies with both gestational age and diagnosis. Under differing circumstances, the conceptus is both fetus and child. As fetus, it is an object of scrutiny and, within certain limits, can be rejected if diagnosed as abnormal . As child, it is the object of support, although...