Children, Ethics, and Modern Medicine

Introduction

THE PEDIATRIC PARADIGM (AND ITS REVISIONS) This is a book about medical ethics and the care of children, focusing on parental and professional responsibilities toward patients who are young and ill. Two controversies from my home in southern Indiana—one well known, the other less so—help to focus ideas. In 1982, the case of Baby Doe brought national attention to Bloomington when parents refused life-saving surgery for their baby, born with Down syndrome, to correct his esophageal blockage. After Bloomington Hospital challenged that decision, the Monroe County Circuit Court decided in the parents’ favor. In 1998, in nearby Morgantown, the parents of twelve-year-old Bradley Hamm opted to treat his pneumonia with prayer rather than antibiotics. That decision went medically and legally uncontested, and Bradley, like Baby Doe, died from a correctable problem. In both cases, parents were given absolute decision-making authority, contrary to the apparent medical interests of their children. Did the parents do the right thing? Was it right to grant them this degree of authority? What were the responsibilities of medical professionals working with these families? Surprisingly, there is little sustained discussion in bioethics that helps to answer these questions. I hope to correct for that oversight in these pages. Drawing on research in medical ethics and participant observation in various pediatric medical settings, this book will develop moral norms for professional and parental responsibility in the care of children. My goals are to define basic norms that should shape family and professional responsibility in pediatrics and deepen our understanding of those norms by connecting them to important cases in American law or to moral cases that materialized in my hospital fieldwork. In the process, I will clarify duties and virtues that shape how adults ought to direct their energies toward young patients in need of care. Why has bioethics devoted so little attention to questions in pediatrics? In part the answer lies in the synergism between the politics and ethics of biomedicine. Starting in the 1960s, bioethics sought to give voice to the paIntroduction tients’ rights movement—to define and defend a basic set of protections to ensure that professionals will respect adult patients as persons. In the process, bioethics developed guidelines for primary care providers, medical researchers, and specialists to treat patients and research subjects humanely. Focusing on such problems as legal and moral issues regarding informed consent in medical treatment and research; genetic testing; patient confidentiality ; organ procurement, distribution, and transplantation; and treatment of previously competent or dying patients, bioethics focuses considerable attention to the rights of adults as free and equal persons. A central goal is to defend individual autonomy—the right of patients to decide on treatment, regardless of whether such decisions advance their medical welfare . Patients’ rights provide individuals with protections against others’ power, interventions, or collective interests; the norm of patient autonomy constrains what health care providers may do for a patient’s medical benefit .1 Such rights are generally seen in negative terms—that is, as rights to refuse unwanted treatment or not to be deceived by health care professionals . Adult medicine is thus structured by a strong presumption against paternalism . Lost in that synergism of rights and norms are the many interests of the voiceless, perhaps because it has been assumed that a framework for adult, competent patients could be expanded to subsume young children and other noncompetent patients. I believe that in the case of children and young adolescents, this assumption is wrong—that adult and pediatric medical ethics differ sufficiently to warrant a separate analysis for the latter. Grafting pediatric ethics to the adult paradigm is a mistake for at least two reasons. First, most children generally lack the level of self-determination that is assumed for adults. Accordingly, professionals may presume to protect or promote children’s welfare with fewer limits on their authority than in adult contexts—at least during their patients’ early years. Second, family members are principally responsible for guarding their child as a needy and developing human being; the patient is a member of a social unit rather than a freestanding agent. That fact complicates professional responsibility by requiring medical providers to triangulate their commitment to patient welfare with the opportunities and constraints provided by the child’s needs and the family’s commitments and background. Pediatric care providers must forge a therapeutic alliance with the patient and his or her family, and they must advocate for the patient’s basic interests when that alliance has broken...