Anthony Shaw

Fetal therapy: Ethical considerations

Decisions to undertake fetal therapy involve a complex assessment of the best interests of the fetus and a pregnant woman’s interest in her own health and freedom from unwanted invasion of her body. Pregnant women almost always accept a recommendation for fetal therapy that is approached collaboratively, especially if the therapy is of proven efficacy and has a low maternal risk. Fetal therapy of unproven efficacy should only be undertaken as part of an approved research protocol. In recommending fetal therapy of proven efficacy, physicians should respect maternal choice and assessment of risk. Under limited circumstances when fetal therapy would be effective in preventing irrevocable and substantial fetal harm with negligible risk to the health and well-being of the pregnant woman, should the pregnant woman be opposed to the intervention, physicians should engage in a process of communication and conflict resolution that may require consultation from an ethics committee and, in rare cases, require judicial review. A physician should never intervene without the woman’s explicit consent before judicial review. The practice of caring for a pregnant woman and her fetus has always had the dual goal of a good outcome for both. In pursuit of this goal, the pregnant woman has always had to consider undergoing her own risks or discomforts for the sake of her fetus. With recent advances in perinatal medicine, the pregnant woman and her fetus are increasingly viewed as two treatable patients.1 Fetal medicine is now well-established and offers a range of diagnostic and therapeutic modalities. However, the maternal-fetal relationship is unique because access to the fetus is through the pregnant woman. As a result, fetal evaluation and therapy have created a variety of ethical questions about a physician’s responsibility when the interests of a pregnant woman and her fetus appear to be in conflict. Decisions by pregnant women concerning fetal diagnostic and therapeutic interventions clearly involve considerations as to what is best for the fetus. However, these decisions also involve the woman’s interest in her own health and freedom from unwanted invasion of her body because all diagnostic and therapeutic interventions on behalf of a fetus necessarily affect the pregnant woman and require her direct participation. Thus, fetal therapy poses a potential conflict between the pregnant woman’s own best interests, and her (and others’) perception of the best interests of her fetus.2 The dilemma of the surrogate decision maker (such as a son or daughter) who must balance his or her own interests and the interests of the patient (such as an elderly parent) is not new to medicine; however, in these other contexts, the surrogate decision maker’s health and freedom from unwanted bodily invasion are rarely directly affected by the decision.3 In addition, the pregnant woman’s physician may face a potential conflict between his or her primary responsibility for the woman’s health and well-being and a secondary responsibility for the health of the fetus. Previously, making decisions about maternal and fetal well-being was the sole purview of the pregnant woman and her physician. This relationship developed during a period when virtually all interventions for fetal well-being were directed specifically toward the general health of the mother and not specifically for the fetus. Now, however, many therapeutic interventions can be directed toward specific medical and surgical problems with the fetus. In light of this complexity, it is beneficial for involved primary care physicians, pediatricians, and subspecialists (such as neonatologists, perinatologists, pediatric surgeons, cardiologists, and geneticists) to advise the obstetrician and the woman when complex fetal diagnostic and therapeutic interventions are contemplated. A team of consulting professionals should be brought together in a collaborative and multidisciplinary fetal treatment program with established policies on communication, diagnostic and therapeutic interventions, and quality improvement.4 Pediatricians and other appropriate consultants should work with obstetricians to evaluate the potential risks and benefits of a given therapy for the fetus and to formulate treatment recommendations that consider the potential risks to the woman. Members of the health care team should assist the parents in making an informed decision about fetal therapy. This is best accomplished by communicating directly with the parents to ensure that information is understood and that the parents are aware of the broad range of possible outcomes for both the pregnant woman and her fetus. This is extremely important because in their desire to simplify their understanding of fetal interventions parents may believe that a therapeutic intervention will result in either the death of the fetus or complete correction of the problem. Counseling should insure that parents understand the range of possible outcomes between complete cure and death.5 Finally, the health care team should be supportive and available to the family, whatever their choice. The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate. PEDIATRICS (ISSN 0031 4005). Copyright