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3. Pediatric Paternalism
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THREE Pediatric Paternalism I remember walking into a room and seeing one of our nurses with her hand on a teenager’s knee. That kind of touching is not unusual with young children. I told her that it was totally unacceptable with teenagers. But that is a danger in a children’s setting: infantilizing patients, presuming that they are less mature than they are. —Kathy Thompson, charge nurse in Baylin’s Intensive Care Unit1 About allowing adolescents with cystic fibrosis to refuse treatment, even if that meant they will die: CF kids have lived with their illness and the suffering it causes their entire lives. They know more about it and what it does to them than anyone else. Chronically ill children have been in and out of hospitals a lot, and know more about that than most adults. Why should we be telling them what they should decide? —Sharon Johnston, director of the Office of Ethics, Baylin Pediatric Medical Center2 MEDICAL COMPLICATIONS Ibegan the last chapter by focusing on the category of responsibility as providing the framework for understanding adults’ duties and virtues and their connection to children’s rights. In addition to defending children ’s basic rights, I argued that the idea of responsibility extends beyond those rights to acts and dispositions that define a broader basis for encumbering adults with the duty to care for children. I then sought to refine that idea by looking at adults’ responsibilities in special relationships with children , especially family and professional relationships. There, I argued that professional responsibility in pediatrics should be guided by the norm of mediated beneficence, which requires medical professionals to triangulate their commitment to patient welfare with the opportunities and constraints provided by the child’s needs and the family’s desires and background . Therein lies a medical professional’s challenge of forming a therapeutic alliance. That triangulation makes for professional contexts that are typically more complex than those in adult care. In pediatric medicine, health care providers must situate their caring conduct within the contours of a family’s wishes; there is a second party with whom to work. Parents or guardians are presumptively responsible for making decisions on behalf of their children, and parental autonomy, as I have argued, is an important value in decision making in pediatric medicine. That is not to say that family relations are irrelevant to contexts of adult care. But, as I will argue in the next chapter, family representatives in adult care are obligated to represent the patient’s presumed or stated wishes and may turn to considerations of the patient’s basic interest only when they lack sufficient information about those wishes . With adults, proxy representation typically presumes that the patient has undergone childhood development or, for various reasons, cannot develop beyond his or her current state. In contrast, in cases with children (especially young children with no history of informed decision making), family members typically have less information about the patient’s wishes and must attend to the child’s immediate welfare as well as considerations that bear on the child’s development. In pediatrics, professionals must form an alliance with the patient’s parents or guardians, whose responsibilities include protecting the child’s present and future interests, as well as the family’s own interests in sustaining its cultural, religious, and other commitments. Yet as child neglect and abuse statistics regrettably indicate, parents cannot always be trusted to protect and promote their children’s interests. Hence the second reason for revising the pediatric paradigm: Presuming a therapeutic alliance with a family can be naive, and in some cases dangerous , for a dependent minor. At times, interventions are necessary and justified . This revision qualifies our first revision of the pediatric paradigm, for it reminds us that the norm of parental autonomy is not absolute. As such, this second revision reminds us of core values that lie at the heart of the pediatric paradigm, in which beneficence has general priority to autonomy. Because the norm of beneficence is less qualified in pediatrics than in adult contexts, care providers may assume more prerogatives that derive from the substantive duty to care. Medical professionals may act with an eye to a child’s interests with fewer restrictions on their decision-making authority than in cases involving adult patients. In adult medicine, patients have rights that operate as side constraints on the conduct of health care professionals, rights that aim to protect patients ’ dignity, equality, and autonomy. Children’s rights, as...