In pediatrics, it is the child—not the parent—who is the patient, and the pediatrician’s professional, ethical, and legal obligations are owed to the child. While parents in our society have been given wide latitude to raise children as they see fit, there are matters with respect to which the state can appropriately intervene: Parents may spank their children, but child abuse is not permitted. Parents may choose a variety of educational settings and resources for their children, but the state does demand that children achieve some level of literacy. Pediatricians, therefore, care for children and work with their parents in a social context that requires their intervention in ways that may range from working with parents to make decisions of great medical complexity (see Chapter 123) to notifying the state of suspected neglect or abuse (see Chapter 36).
This chapter focuses on three areas in which the law, ethics, and clinical judgment intertwine: (1) Who makes decisions when it comes to caring for children and adolescents? (2) Who is able to refuse treatment—the child and/or the parent for the child? (3) When is confidentiality an issue for an older child or adolescent?
CONSENT TO TREATMENT: WHO DECIDES?
Informed consent is a legal notion of relatively recent vintage. At its core, it requires physicians to provide truthful, relevant information to patients/surrogates in the process of obtaining their consent to treatment. Although the concept began to appear in legal opinions in the late 19th and early 20th centuries, it wasn’t until the 1950s that courts undertook in earnest the hard work of delineating its contours and requirements. The applicability of informed-consent principles to pediatric decision-making was confirmed by the American Academy of Pediatrics (AAP) in its 1976 statement on the subject and has since been reaffirmed by the AAP in statements published in 1995 and 2016.
At the same time that informed consent was being worked out in the courts, the moral and legal status of children was undergoing a vast upheaval. Before the 20th century, children (until recently, all those under 21 years, and now almost universally those under 18) were considered a form of chattel with no recognizable legal rights. Since that time, courts have increasingly recognized that children and adolescents have rights separate from those of their parents. While parents, of course, have the right (and duty) to make decisions about their children’s health care, the “children’s rights” movement over the last 50 years has recognized the rights of adolescents to participate in making decisions about their health care, just as they do in a variety of other socio-legal contexts. However, minors do not have the legal authority to consent to medical treatment (subject to certain exceptions discussed below). Assent is the legal and ethical term that connotes the minor patient’s right to participate in the decision-making process. The combination of parental decision-making authority, ...