The clinical care of pregnant women and children raises unique and complex ethical issues for three reasons. Firstly, unlike in other areas of medicine where the primary ethical principle is respect for patient autonomy, the care of pregnant women and children requires a balancing act. During pregnancy, the balancing act may involve the weighing of actual physical risks to the pregnant woman against potential benefits for her fetus. After the birth of the child, the balancing requires us to weigh the child’s medical interests against the psychological, spiritual, or economic interests of his or her parents and family. This balancing requires that decisions reflect considerations other than the values, desires, or stated wishes of the patient. Parents, doctors, ethics committees, judges, or other adults must decide what is or is not permissible for a given child or a group of children.
Obstetrics and pediatrics are also especially complicated because the goal of clinical medicine in these areas is fundamentally different from that in other areas of medicine. In other areas, medicine works against the inevitable. Everybody will get sick. Everybody will die. In obstetrics and pediatrics, however, the hope and the goal is that everyone will be healthy. In fact, most pregnancies turn out well, most children do not get seriously ill, and very few die during childbirth or childhood. The goal in obstetrics and pediatrics is to preserve and protect good health, rather than to diagnose and cure disease. Both are, fundamentally, preventive. However, the means by which disease is prevented are themselves becoming more and more invasive. Prenatal testing, newborn screening, and immunizations all require sophisticated medical interventions. These interventions are beneficial, but not always risk free.
A unique aspect of pediatrics that distinguishes it from both obstetrics and adult medicine is the way in which it must take into account the progressive and evolving capacity of children to participate in medical decisions. This evolving capacity takes children from absolute inability to participate – during fetal life or infancy – toward the full capacity to participate that they generally acquire by late adolescence.
One must read the following chapters with these three factors in mind. Each confronts these differences and avoids the easy procedural trap of trying to transform the ethics dilemmas of obstetrics and pediatrics into dilemmas of surrogate decision making. That trap tempts us to attempt an end run around the difficult dilemmas of this clinical domain by simply assigning decision-making authority to one or another adult. Thus, we may say, “Let the parents decide. After all, they are the ones who must live with the consequences of the decision.” Or “Let the parents decide. After all, they must know their child best.” Or, “Let the doctors decide. They have special insight into the medical facts that ought to be considered in this decision.” Each of these procedural shortcuts tries to substitute an efficient simplicity for a messy confrontation with the fundamental complexities of understanding the moral claims that our children make upon us, and deciding what our best response ought to be.
The section is divided into two halves. The first half deals with the ethical dilemmas of caring for pregnant women in high-risk obstetrical situations, with the dilemmas of our expanding capabilities to screen fetuses and newborns for diseases that we cannot yet treat, and with the complexities of infertility treatment. The second half focuses more on dilemmas that arise in pediatric practice: questions about when and whether to report child abuse, about when a non-therapeutic intervention might be appropriate, and the dilemmas raised by the evolving competencies of children as they move through adolescence. The authors of the various chapters in this section take on a range of such difficult issues in pediatrics. They highlight the conceptual issues as well as the practical ones, offering not just concrete recommendations for clinicians but theoretical ethical justifications for their actions as well.
The ethics of providing clinical care for pregnant women and children is primarily about obligations, rather than rights. The authors of chapters in this section attempt to clarify the nature and scope of those obligations in different contexts. The focus upon obligations, rather than rights, sometimes leads them as writers and us as readers into uncomfortable territory, but it is necessary to follow the path. It does not make sense to talk about whether an unconceived child has a right to be conceived. Instead, we must talk about the sorts of safeguards that must be put into place to help doctors and parents who confront infertility to do so in a way that serves the needs of all. It does not make sense to talk about the rights of a newborn to be screened for certain diseases. Instead, we must focus on our duties and obligations to provide or not provide screening in particular situations. To the extent that we, collectively, have an obligation to children, that obligation falls equally upon parents, doctors, policy makers, and the community that collectively subsidizes obstetrical and pediatric therapies.