Children, Ethics, and Modern Medicine

Notes

NOTES INTRODUCTION 1. Over the course of this development, patients’ rights have taken on different functions . In response to early abuses in research in the 1960s, the defense of individual rights functioned to protect research subjects from utilitarianism, that is, from being instrumentalized in researchers’ quests for scientific knowledge. Soon thereafter, those rights assumed a different role in medical as opposed to research contexts. In medical situations, the language of rights was invoked to protect patients from paternalism. Rather than posing the danger of instrumentalizing patients, paternalism poses the danger of infantalizing patients. Rights are meant to protect individuals’ dignity and equality, but the implications of those values differ, depending on the context. I am grateful to Heather McConnell for enabling me to see this point. 2. I borrow the idea of a basic moral paradigm and subsequent revisions from Michael Walzer’s approach to war in Just and Unjust Wars: A Moral Argument with Historical Illustrations (New York: Basic Books, 1977), chaps. 4–6. 3. Brian Clark, Whose Life Is It, Anyway? (New York: Dodd, Mead, 1978). 4. The idea of “first” and “second” languages comes from Robert Bellah et al., Habits of the Heart: Individualism and Commitment in American Life (Berkeley: University of California Press, 1985). According to Bellah et al., the first language of individualism often mutes the second language of communal action and social responsibility, on which Americans often, if unconsciously, rely. 5. Philippe Aires, Centuries of Childhood: A Social History (New York: Random House, 1965), 38. 6. See Angel Ballabriga, “One Century of Pediatrics in Europe,” in History of Pediatrics , 1985–1950, ed. B. L. Nichols, A. Ballabriga, and N. Krechner (New York: Vevey/ Raven Press, 1991), 1–21. 7. Children’s rights have developed in American law, unevenly to be sure, either by extending adults’ rights, e.g., the right to some medical care without parents’ consent, or by recognizing children’s unique needs and interests, e.g., the right to an education up to a certain age. In Chapter 2, my argument for children’s moral rights will follow these two developments in their main lines. For a discussion of children’s rights and American law, see Hillary Rodham, “Children under the Law,” Harvard Educational Review 43 (November 1973): 487–514. 8. The language of ideal and nonideal theory draws from John Rawls, A Theory of Justice (Cambridge, Mass.: Belknap Press, 1971), 8–9, 245–46. 9. David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision-Making (New York: Basic Books, 1991), 9. 10. Ibid. Although not a product of the era about which Rothman writes, Edwin N. Forman and Rosalind Ekman Ladd draw extensively on cases in their contribution to pediatric ethics. See Edwin N. Forman and Rosalind Ekman Ladd, Ethical Dilemmas in Pediatrics : A Case Study Approach (Lanham, Md.: University Press of America, 1995). 11. Clifford Geertz, Local Knowledge: Further Essays in Interpretive Anthropology (New York: Basic Books, 1983), 57. 12. Daniel F. Chambliss, Beyond Caring: Hospitals, Nurses, and the Social Organization of Ethics (Chicago: University of Chicago Press, 1996), 6. 13. Arthur Kleinman, Writing at the Margin: Discourse between Anthropology and Medicine (Berkeley: University of California Press, 1995), 49–50. See also Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition (New York: Basic Books, 1988). 14. Kleinman, Writing at the Margin, 51. 15. That is not to accept Chambliss’s and Kleinman’s characterizations of bioethics as entirely accurate. I critically address their claims in “Religion, Ethics, and Clinical Immersion : An Appraisal of Three Pioneers,” in Caring Well: Religion, Narrative, and Health Care Ethics, ed. David H. Smith (Louisville: Westminster/John Knox Press, 2000), 17–42. 16. Geertz, Local Knowledge, 57. 17. Rawls, Theory of Justice, 20. 18. Richard B. Miller, “Love and Death in a Pediatric Intensive Care Unit,” Annual of the Society of Christian Ethics 14 (1994): 21–39. 19. My remarks here are informed by Michael Walzer’s view of social criticism in The Company of Critics: Social Criticism and Political Commitment in the Twentieth Century (New York: Basic Books, 1988), 3–28. 20. These parallels grow out of the work by Carol Gilligan, In a Different Voice: Psychological Theory and Women’s Development (Cambridge, Mass.: Harvard University Press, 1982). For recent discussions that challenge these parallels, see the essays in Feminism and Bioethics: Beyond Reproduction, ed. Susan M. Wolf (New York: Oxford University Press, 1996). 1. PARENTAL RESPONSIBILITY IN FEAR AND TREMBLING 1. Personal interview, January...