Children, Ethics, and Modern Medicine

5. Basic Interests

PERPETUAL MOTION While visiting a children’s hospital in the Northeast, I encountered an intriguing sculpture of sorts, half art and half science, housed in a large glass encasement. Named Perpetual Motion, the sculpture is a colorful contraption of metal, wood, rubber, and plastic. Mechanical activity begins in one corner, where a machine-driven pulley lifts brightly colored balls, one at a time, to the top of the sculpture and propels them down a long, circuitous metal runner. As each ball proceeds along its route, it drops through baskets, rings a bell and chimes, knocks on wooden blocks, sends a pendulum swinging to strike a gong, and bounces along a xylophone, creating a gentle cacophony throughout the day. Each ball travels down and through the sculpture’s maze for about forty seconds before it finds its way to the bottom runner and back to the pulley to begin another journey. No family passes by without stopping to watch and listen; children of all abilities, races, ages, and ethnic backgrounds find Perpetual Motion fascinating . The sculpture is symbolic, but not in the usual sense that art is symbolic . By appealing to children with diverse needs and backgrounds, Perpetual Motion is an analogy for a primary good. The architecture and artistry of Perpetual Motion draw universal attention, joining people from a wide range of beliefs and customs. As a site of shared admiration, the sculpture represents the idea that some goods cut across cultures and needs, that some goods are basic to a child’s interests. Pediatric care is premised on the idea that certain needs and interests are not final goods but rather are instrumental to a child’s pursuit of other, more comprehensive goods, whatever FIVE Basic Interests Our pluralistic beliefs about child-rearing do not lead to a uniform interpretation of the best interests standard. —Hillary Rodham1 Basic Interests | 119 those latter goods might be. In pediatric care, basic interests are not generally in dispute, and these interests (like Perpetual Motion) provide a center around which to concentrate talent, energy, imagination, and hope. A child’s basic interests are the proper object of an adult’s duty to care. In this chapter, I want to pursue that idea and the challenge it poses to medical ethics. To prepare for that discussion, I want to review some of the ideas we have examined thus far. At the outset of this book, I noted that medical ethics has devoted considerable attention to the norm of patient autonomy, in large part to ground the idea of patients’ rights and to protect patients from medical power and paternalism. As a limit on the value (and exercise) of beneficence , respect for autonomy may trump medical providers’ recommendations and may require providers to tolerate patients’ decisions that are contrary to their medical interests. In adult medicine, what poses as beneficent treatment must be acceptable on the patient’s own terms. Antipaternalistism and respect for patient autonomy are laudable ideas, but, as I noted in the Introduction, developing their moral contours can crowd out attention to equally important issues in medical contexts for patients who cannot exercise substantial autonomy. Our discussion of pediatric paternalism and representing patients in the last two chapters should help us see how that is so; there, I aimed to identify classes of patients for whom autonomy -based rights make no sense and whose dignity must be protected on other terms. These incompetent patients have not provided a basis for others to function as their delegates or representatives. Such patients need guardians to make decisions for them on the basis of their basic interests. Who are such patients? Here our focus is on children and adolescents, and they fall into four groups. First are previously competent patients who are inaccessible as a result of infirmity or accidental trauma, and who cannot provide express or presumed wishes regarding treatment. This group includes patients for whom insufficient information exists to invoke explicit wishes or the mechanism of substituted judgment, despite the fact that they were formerly competent . Some mature minors, emancipated minors, and older teenagers who are rendered unconscious by infirmity or trauma fall into this class. A second class would be presumptively competent patients who are communicative , but whose competence is rebutted on psychological or other testing. In this class would be fifteen- to seventeen-year-old patients who lack sufficient maturity to shoulder the burden of competence. Third are presumptively incompetent patients who are unable to override the rebuttable presumption of their...