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Heroic Medicine, Physician Autonomy, and Patient Rights
Published online by Cambridge University Press: 27 December 2018
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- Copyright © American Bar Foundation, 1994
References
1 Eliot Freidson, Profession of Medicine: A Study in the Sociology of Applied Knowledge 355-58 (Chicago: University of Chicago Press, 1988 [1970]) (“Freidson, Profession of Medicine”).Google Scholar
2 Id. at 357.Google Scholar
3 See also Jay Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984) (“Katz, Silent World”).Google Scholar
4 See David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (New York: Basic Books, 1991) (“Rothman, Strangers at the Bedside”).Google Scholar
5 Freidson, Profession of Medicine 383.Google Scholar
6 See, among many others, Howard S. Becker, Blanche Geer, Everett C. Hughes, & Anselm L. Strauss, Boys in White (Chicago: University of Chicago Press, 1961); David Sudnow, Passing On: The Social Organization of Dying (Englewood Cliffs, N.J.: Prentice-Hall, 1967) (“Sudnow, Passing On”); Matcia Millman, The Unkindest Cut (New York: William Morrow, 1976); Renee C. Fox & Judith P. Swazey, The Courage to Fail (2d ed. Chicago: University of Chicago Ptess, 1978); Charles L. Bosk, Forgive and Remember (Chicago: University of Chicago Press, 1979); and Anselm Sttauss, Shizuko Fagerhaugh, Barbara Suczek, & Carolyn Wiener, Social Organization of Medical Work (Chicago: University of Chicago Press, 1985).Google Scholar
7 Andrew Abbott, The System of Professions: An Essay on the Division of Expert Labor 5 (Chicago: University of Chicago Press, 1988) (“Abbott, System of Professions”).CrossRefGoogle Scholar
8 See Freidson, Profession of Medicine, and id., Professional Dominance (Chicago: Aldine, 1970).Google Scholar
9 Magali S. Larson, The Rise of Professionalism (Berkeley: University of California Press, 1977).Google Scholar
10 For a discussion of the evolution of the legal doctrine of informed consent, see, e.g., Katz, Silent World ch. 3. For a discussion of the history of consent in medical research, see Rothman, Strangers at the Bedside. See also Ruth R. Faden & Tom L. Beauchamp, A History and Theory of Informed Consent (New York: Oxford University Press, 1986).Google Scholar
11 Perhaps the most famous legal case involved Karen Ann Quinlan who had lapsed into a persistent vegetative state in 1976 at the age of 22. Karen's parents sought to remove her from ventilatory support, but the hospital and its physicians resisted. After a long legal battle, the New Jersey Supreme Court ruled in her parents' favor. Rothman argues that the significance of the Quinlan case was not so much its establishment of a “right to die” but rather its establishment of the principle that physicians are not always the best representatives of patients' interests (see Rothman, Strangers at the Bedside ch. 11).Google Scholar
12 The medical profession has been one of the most successful jurisdictional entrepreneurs, effectively transforming moral questions into technical questions in areas such as drug and alcohol abuse and homosexuality. See Peter Conrad & Joseph W. Schneider, Deviance and Medicakzation (expanded ed. Philadelphia: Temple University Press, 1992). For a dissent-irig view, see Eliot Freidson's Medical Work in America: Essays on Health Care (New Haven, Conn.: Yale University Press, 1989) (“Freidson, Medical Work in America”), where he claims that “lay groups are as prone to medicalize their problems and urge a reluctant medical profession to take jurisdiction over them as the medical profession is eager to do so on its own” (at 183).Google Scholar
13 Accounts of the Baby Doe cases and the resulting regulations appear in Anspach at 7-8 and in Bosk at 84-85. Briefly, the Baby Doe regulations were initiated by the Reagan administration in response to cases such as the Indiana Supreme Court's decision that the parents of an infant with Down syndrome had the right to refuse surgery to correct the infant's throat obstruction. The controversy drew the public's attention to the difficulties of balancing parents' rights to refuse treatment for their infants and the infants' rights to receive care. The Baby Doe regulations, which forbid nurseries from withholding food, water, or medical treatment from disabled newborns, were eventually struck down by the U.S. Supreme Court. In 1985, Congress passed a law mandating state child welfare agencies to investigate cases of “medical neglect,” defined as withholding medically indicated treatment from critically ill infants. The literature on the Baby Doe regulations is extensive, and readers may wish to consult Annas, George, “Baby Doe Regulations: Doctors as Child Abusers,” 13 Hastings Center Rep. 26 (1983); Jean Harley Guillemin & Lynda Lytle Holmstrom, Mixed Blessings: Intensive Care for Newborns (New York: Oxford University Press, 1986) (“Guillemin & Holmstrom, Mixed Blessings”); id., “Legal Cases, Government Regulations and Clinical Realities in Newborn Intensive Care,” 1 Am. J. Perinatology 89 (1983); Murray, T., “The Final Anticlimactic Ruling on Baby Doe,” 15 Hastings Center Rep. 5 (1985); D. Rhoden & G. Annas, “Withholding Treatment for Baby Doe,” 63 Milbank Q. 18 (1985); and Fred Frohock, Special Care: Medical Decisions at the Beginning of Life (Chicago: University of Chicago Press, 1986).CrossRefGoogle ScholarPubMed
14 An account of the Karen Ann Quinlan case appears in Zussman (at 8, 173-75, 219-21). For a brief description of the case, see note 11. The literature on this case is extensive as well. Readers may wish to consult Karen Quinlan's parents' account: Joseph Quinlan & Julia Quinlan, with Phyllis Battele, Karen Ann: The Quinlaro Tell Their Story (Garden City, New York: Doubleday, 1977). An extensive account appears in Rothman's Strangers at the Bedside ch. 11.Google Scholar
15 Susan Shapiro's work is precisely attuned to this problem. See her “The Social Control of Impersonal Trust,” 93 Am. J. Soc. 623 (1987).CrossRefGoogle Scholar
16 Freidson, Medical Work in America at ix.Google Scholar
17 See Anspach's appendix I for a good discussion of the demands of qualitative research and the way practical decisions shape the research design and results. See Bosk's chs. 1 & 7 for a sensitive discussion of the researcher's rights and obligations in the field and the distinction between the invited guest and the uninvited intruder. And see Zussman's appendix for a nice discussion of the thomy issue of generalizability.Google Scholar
18 A newborn is called a “neonate” during the first 28 days of life. Neonatology, the pediatric specialty that focuses on the treatment of critically ill newborns, evolved as a separate medical specialty during the 1960s. For a total ethnography of the N1CU coupled with cross-national comparisons, readers may wish to consult Guillemin & Holmstrom, Mixed Blessings. Google Scholar
19 In social control decision making, in contrast, the knowledge of the nurses and the social workers is valued most highly. Carol A. Heimer & Lisa R. Staffen, “Interdependence and Reintegrative Social Control: Labelling and Reforming ‘Inappropriate’ Parents in Neonatal Intensive Care Units” (unpublished, American Bar Foundation, 1994) (“Heimer & Staffen, ‘Interdependence and Reintegrative Social Control’”).Google Scholar
20 See Katz, Jay, “Why Doctors Don't Disclose Uncertainty,” 14 Hastings Center Rep. 35 (1984).CrossRefGoogle ScholarPubMed
21 Abbott, System of Professions (cited in note 7).Google Scholar
22 See id. at 195.Google Scholar
23 Bosk acknowledges his intellectual debt to sociologist Everett C. Hughes, who argued that professionals take other people's emergencies and fashion out of them their own work routines. Hughes's legacy in sociology is an interest in uncovering workplace routines, everyday understandings, and normal operating procedures. In the process, as Bosk explains, conventional sentimentality is often reversed: the proud are often humbled and the humble made proud. See Everett C. Hughes, The Sociobgical Eye: Selected Papers on Work, Self, and Society (Chicago: Aldine-Atherton, 1971).Google Scholar
24 As Bosk notes, at the time of his research in the late 1970s, the only therapeutic intervention available to patients was second-trimester abortion. In utero intervention for selected birth defects is now possible but only for a very limited number of anomalies (at 25). For a discussion of the ethical implications of the future of genetic medicine, see Bosk at 139-44.Google Scholar
25 The ability to define the content of one's work is a central feature of the professions. See Freidson, Profession of Medicine (cited in note 1).Google Scholar
26 In contrast, see Katz, Silent World ch. 8 (cited in note 3), where he argues that abandonment results from doctors' distrust of patients' decision-making capacity.Google Scholar
27 See note 13.Google Scholar
28 Anspach's work on case presentation illustrates this point. She argues that patients are treated in terms of a series of biological processes in her “Notes on the Sociology of Medical Discourse: The Language of Case Presentation,” 29 J. Health & Soc. Behav. 357 (1988).CrossRefGoogle Scholar
29 My research suggests that the relationship between parents and medical staff members is more complex than this. Patients may be potential technical and legal problems, but they are also potential discharge problems. To the extent that the medical staff is dependent on the parents of the infants to take them home following discharge, there will be limits on the staff's tendency to marginalize them. This argument appears in Heimer & Staffen, “Inter-dependence and Reintegrative Social Control” (cited in note 19).Google Scholar
30 Bosk cites Annas, George J., “Ethics Committees: From Ethical Comfort to Ethical Cover,” 21 Hastings Center Rep. 18 (1991).CrossRefGoogle ScholarPubMed
31 See Bernard Barber, The Logic and Limits of Trust 131-49 (New Brunswick, N.J.: Rutgers University Press, 1983), and Freidson, Profession of Medicine 383-92 (cited in note 1), for discussions of the causes and consequences of medicine's waning cultural authority.Google Scholar
32 Sudnow, Passing On (cited in note 6).Google Scholar
33 “This Is the Moment of Truth,”Wall St.J., 16 Aug. 1993, sec. A, at 15.Google Scholar
34 This is not the first time, of course, that the AMA has lobbied on behalf of physicians' (or some subset of physicians') interests. For a discussion of the AMA and previous efforts to pass government-sponsored health insurance, see Paul Starr, The Social Transformation of American Medicine 243-89 (New York: Basic Books, 1982). Although the AMA has seen a steady decline in the proportion of physicians who are members, the organization has assumed a vocal role in the current debate. For a discussion of the limited effectiveness of the AMA as an advocate for physicians, see id. at 427.Google Scholar
35 Freidson, Profession of Medicine 388.Google Scholar