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Shifting Paradigms in Bioethics and Health Law: The Rise of a New Pragmatism
Published online by Cambridge University Press: 24 February 2021
Extract
Neither bioethics nor health law is old as an established discipline. Modern bioethics dates from the late 1960s or early 1970s. Health law as a domain characterized by its own casebooks, courses, and specialists arguably began somewhat earlier. While each has far older precursors, the two fields have seen a modern resurgence in the last thirty years or so. Yet each in these three decades has been dominated by a certain method or paradigm. In bioethics that has come to be known as “principlism, ” deductive reasoning from a limited set of middle-level ethical principles, albeit with some reciprocal attention to the implications of the case at hand for those principles. No comparable term has emerged in health law, and the field has arguably been less enamored of philosophical abstraction. But the pattern has often been similar: the creation of middle-level rules (on informed consent, surrogate decision-making, advance directives and so on) and then their downward application with insufficient attention to the clinical context, the specific characteristics of the disputants (such as insurance status, race or ethnicity, and gender), and whether the rules will actually work in medical settings.
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- American Journal of Law & Medicine , Volume 20 , Issue 4: Symposium Dedicated to Joseph “Jay” Healey , 1994 , pp. 395 - 415
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- Copyright © American Society of Law, Medicine and Ethics and Boston University 1994
Footnotes
This Article originated as a presentation at the American Society of Law, Medicine & Ethics 1994 Health Law Workshop.
References
1 See David J. Rothman, Strangers at the Bedside: A History of how Law and Bioethics Transformed Medical Decision Making (1991); Albert R. Jonsen, The Birth of Bioethics, Hastings Ctr. Rep., Nov.-Dec. 1993, at S1. One could argue that the birth of modern bioethics was the promulgation on the Nuremberg Code in 1949, the first major pronouncement of the ethics of human subjects research. However, modern bioethics as a field did not really get under way in the U.S. until later. On the Nuremberg Code's impact and its limits in the U.S., see the Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation (George J. Annas & Michael Grodin eds., 1992).
Bioethics is the study of ethical problems in health care and the biological sciences. I eschew the use of “biomedical ethics” or “medical ethics” as the overarching term because of their excessive emphasis on medicine, to the exclusion of nursing and other health care ethics.
2 The rise of health law as a discipline apart from forensic medicine, a rise that seems to have started around 1960 and certainly gathered steam in the 1970s and 1980s, can be roughly gauged from the publication dates of its casebooks. See William J. Curran et al., Health Care Law, Forensic Science, and Public Policy (4th ed. 1990) (first published in 1960 as Law and medicine); David J. Sharpe et al., Cases and Materials on Law and medicine (1978); Walter Wadlington et al., Cases and Materials on Law and medicine (1980); Michael H. Shapiro & Roy G. Spece, Jr., Cases, Materials, and Problems On Bioethics and Law (1981 & Supp. 1991); Judith Areen et al., Law, Science and medicine (1984 & Supp. 1989); Barry R. Furrow et al., Health Law (2d ed. 1991 & Supp. 1994) (first published in 1987); Clark C. Havighurst, Health Care Law and Policy (1988 & Supp. 1992); George J. Annas et al., American Health Law (1990). See also Joseph M. Healey, William J. Curran and American Health Law, 55 Conn. Med. 313 (1991). George Annas writes that “[i]n the 1950s and 1960s, ‘Law and Medicine’ courses in law schools were almost exclusively concerned with ….orensic psychiatry and forensic pathology…. In the late 1960s, some ….ourses began concentrating on broader medicolegal issues …. In the 1970s, ….t least some ….ourses expanded to include public policy ….” George J. Annas, Health Law at the Turn of the Century: From White Dwarf to Red Giant, 21 Conn. L. Rev. 551, 551 (1989). As the contents of the casebooks reflect, health law covers a wide array of legal and policy problems in health care, ranging from informed consent and medical malpractice, to issues of access to health care, health care finance, and employment relations in health care. On the rise of health law and the field's relationship to bioethics, see generally Alexander Morgan Capron & Vicki Michel, Law and Bioethics, 27 Loy. L.A. L. Rev. 25 (1993).
Commentators have mapped the relationship of bioethics to health law variously. George Annas has argued that health law drives bioethics. George J. Annas, Judging medicine 3 (1988). See also Carl E. Schneider, Bioethics in the Language of the Law, Hastings Ctr. Rep., July-Aug. 1994, at 16 [hereinafter Language of the Law]. However, Capron and Michel argue that “[r]eciprocally, bioethics has shaped the law.” Capron & Michel, supra, at 32. They maintain that the two fields are distinct, even if closely interrelated. This is supported by the fact that there are now journals primarily devoted to one or the other (for example, on bioethics: the Hastings Center Report, Kennedy Institute of Ethics Journal, Cambridge Quarterly of Healthcare Ethics, and Bioethics versus on health law: the American Journal of Law & Medicine, Annals of Health Law, and Health Matrix: The Journal of Law-Medicine —though Law, Medicine & Health Care recently muddied the waters by switching its name to the Journal of Law, Medicine & Ethics). But there is certainly tremendous overlap; nonlawyer bioethicists regularly discuss law, and lawyers have long joined in the multidisciplinary collaboration to create modern bioethics.
3 Medical ethics is millennia old, of course, including the Hippocratic oath and corpus. William Curran finds the earliest western medicolegal texts to be 16th- and 17th-century Italian works. He recounts that Harvard established a professorship in legal medicine in 1877, but the field was dominated by forensic medicine at least into the 1950s. William J. Curran, Titles in the Medicolegal Field: A Proposal for Reform, 1 Am. J. L. & Med. 1, 10 (1975). In the first issue of the American Journal of Law & Medicine in 1975, Curran proposed the term “'health law,’ to cover the wide range of legal aspects of medicine, nursing, dentistry, and other health service fields including public health and the environment.” Id.
4 “Paradigm” is, of course, borrowed from Thomas S. Kuhn, the Structure of Scientific Revolutions 10-11 (2d ed. 1970). I am not the first to apply the term to current bioethics debates. It is used, for example, in Symposium: Emerging Paradigms in Bioethics, 69 IND. L.J. 945 (1994). See especially Carl E. Schneider, Bioethics With a Human Face, 69 IND. L.J. 1075, 1085 & n.46 (1994) (“the centerpiece of bioethics—its autonomy paradigm” [hereinafter With a Human Face]). See also Arthur L. Caplan, Autonomy and Long-Term Care, 343 Lancet 1024, 1024 (1994) (“the dominant paradigm of autonomy in bioethics“); Juan Carlos Tealdi, Teaching Bioethics as a New Paradigm for Health Professionals, 7 Bioethics 188 (1993); Leslie P. Francis, The Roles of the Family in Making Health Care Decisions for Incompetent Patients, 1992 Utah L. Rev. 861, 880 (“the predominant liberal paradigm of bioethics“); Bruce Jennings et al., Ethical Challenges of Chronic Illness, Hastings Ctr. Rep., Feb.-Mar. 1988, at S1, S4 (the “autonomy paradigm” in bioethics). Daniel Farber and Philip Frickey note that Kuhn's “term is almost always misused to mean something like ‘world-view.’ ….or [Kuhn], a paradigm was not a set of assumptions or a perspective, but rather an actual example of scientific work which served as a model …. “ Daniel A. Farber & Philip P. Frickey, Practical Reason and the First Amendment, 34 Ucla L. Rev. 1615, 1629 (1987) (footnote omitted). I use the term to refer to the model of bioethics analysis supplied by Tom L. Beauchamp & James F. Childress, Principles of Biomedical Ethics (4th ed. 1994). Roger B. Dworkin agrees in Emerging Paradigms in Bioethics: Introduction, 69 IND. L.J. 945, 946 (1994).
5 See Beauchamp & Childress, supra note 4, at 37; Principles of Health Care Ethics (Raanan Gillon & Ann Lloyd eds., 1993); K. Danner Clouser & Bernard Gert.a Critique of Principlism, 15 J. Med. & Phil. 219 (1990). The reciprocal inductivism in Beauchamp & Childress is more recent, as comparison of the current fourth edition to earlier editions shows.
6 There is an empiricist history in modern health law on certain topics, such as malpractice, investigating law's clinical effects. See, e.g., Sylvia A. Law & Steven Polan, Pain and Profit: the Politics of Malpractice (1978); Sylvia a. Law, Blue Cross: what Went Wrong? (2d ed. 1976). More recently, see PAUL C Weiler et al., a Measure of Malpractice: Medical Injury, Malpractice Litigation, and Patient Compensation (1993).
7 The pattern has not been invariable. For example, informed consent doctrine has occasioned considerable empirical investigation. See, e.g., Alan Meisel & Loren H. Roth, Toward an Informed Discussion of Informed Consent: A Review and Critique of the Empirical Studies, 25 Ariz. L. Rev. 265, 340 (1983) (but cautioning that “the studies ….re, as a whole and with some notable exceptions, worse than anecdote and speculation“). Despite these studies, Jay Katz could reaffirm in 1984 his earlier assessment that “‘[T]he law of informed consent is substantially mythic and fairy tale-like as far as advancing patients’ rights to self-decisionmaking is concerned.'” Jay Katz, the Silent World of Doctor and Patient 83 (1984) (footnote omitted). There is also some attention to patient characteristics such as insurance status to be found in health law writings before the recent shift. See, e.g., Rande. Rosenblatt, Dual Track Health Care — The Decline of the Medicaid Cure, 44 O N . L. Rev. 643 (1975) (book comment); Sylvia A. Law, the Rights Ofthe Poor 80-110 (1974).
8 Beauchamp and Childress actually place both rules and more general principles at the middle level, between more abstract theory and particular judgments about cases. Beauchamp & Childress, supra note 4, at 15, 38. I use “middle-level rules” here to apply to both rules and principles, distinguishing them from higher-order theory.
9 ‘Methodologic challenges include John D. Arras, Getting Down to Cases: The Revival of Casuistry in Bioethics, 16 J. Med. & Phil. 29 (1991); Albert R. Jonsen, Of Balloons and Bicycles or the Relationship between Ethical Theory and Practical Judgment, Hastings Ctr. Rep., Sept.-Oct. 1991, at 14; Clouser & Gert, supra note 5; Ronald M. Green, Method in Bioethics: A Troubled Assessment, 15 J. Med. & Phil. 179 (1990); Henry S. Richardson, Specifying Norms as a Way to Resolve Concrete Ethical Problems, 19 Phil. & Pub. Aff. 279 (1990); Albert R. Jonsen & Stephen Toulmin, the Abuse of Casuistry: A History of Moral Reasoning (1988); Stephen Toulmin, The Tyranny of Principles, Hastings Ctr. Rep., Dec. 1981, at 31. Collections of essays on the methodology ferment include Meta Medical Ethics; the Philosophical Foundations of Bioethics (Michael A. Grodin ed., 1995); A Matter of Principles? Ferment in U.S. Bioethics (Edwin R. DuBose et al. eds., 1994); Principles of Health Care Ethics, supra note 5.See generally David DeGrazia, Moving Forward in Bioethical Theory: Theories, Cases, and Specified Principlism, 17 J. Med. & Phil. 511 (1992).
Race-attentive challenges include essays in “ it Just Ain't Fair“: the Ethics of Health Care for African Americans (Annette Dula & Sara Goering eds., 1994) [hereinafter “it Just Ain't Fair“], and in African-American Perspectives on Biomedical Ethics (Harley E. Flack & Edmund D. Pellegrino eds., 1992). Gender-attentive and feminist challenges include Feminism & Bioethics: Beyond Reproduction (Susan M. Wolfed., forthcoming) [hereinafter “Feminism & Bioethics“]; Feminist Perspectives in Medical Ethics (Helen Bequaert Holmes & Laura M. Purdy eds., 1992); Susan Sherwin, no Longer Patient; Feminist Ethics and Health Care (1992); Christine Overall, Ethics and Human Reproduction: a Feminist Analysis (1987).
10 See, e.g.. With a Human Face, supra note 4; Furrow et al., supra note 2, at 375-77.
11 See Beauchamp & Childress, supra note 4, at 17-28.
12 Susan H. Williams seems to agree in Bioethics and Epistemology: A Response to Professor Arras, 69 Ind. L.J. 1021, 1021 (1994) (“[I]n bioethics …[t]he move from theory-based systems of ethics to narrative-based systems of ethics is paralleled by shifts in several related fields. In legal theory, one can see this development in the rise of legal pragmatism ….“). On the revival of interest in pragmatism generally, outside of bioethics and health law, see, for example, Symposium on the Renaissance of Pragmatism in American Legal Thought, 63 S. Cal. L. Rev. 1569 (1990) (subsequently published as Articles and Comments Presented at the Symposium on the Renaissance of Pragmatism in American Legal Thought (1990)); Richard Posner, Problems of Jurisprudence (1990); Cornel West, the American Evasion of Philosophy: A Genealogy of Pragmatism (1989) (especially chs. 5, 6); Richard Rorty, Contingency, Irony, and Solidarity (1989); Daniel A. Farber, Legal Pragmatism and the Constitution, 72 Minn. L. Rev. 1331 (1988); Richard Rorty, Consequences of Pragmatism (1982); Richard Rorty, Philosophy and the Mirror of Nature (1979).
13 This is not their first visit. Karen Hanson notes that “one of Dewey's favorite examples [of the connection between facts and values] is drawn from ….edical practice.” Karen Hanson, Are Principles Ever Properly Ignored? A Reply to Beauchamp on Bioethical Paradigms, 69 Ind. L.J. 975, 976 (1994) (citing John Dewey, Theory of Valuation, in 13 the Later Works 191,210-11 (Jo Ann Boydston ed., 1988)).
14 See, e.g., Daniel A., Farber & Suzanna, Sherry, The 200,000 Cards of Dimitri Yurasov: Further Reflections on Scholarship and Truth, 46 Stan. L. Rev. 647, 647 n.3, 649–50 (1994)Google Scholar [hereinafter “The 200,000 Cards“; Daniel A., Farber & Suzanna, Sherry, Telling Stories Out of School: An Essay on Legal Narratives, 45 Stan. L. Rev. 807, 820–22 (1993)Google Scholar [hereinafter “Telling Stories Out of School“].
15 Joseph Singer writes,
Pragmatists argue that philosophers and legal theorists miss the point if we spend our time worrying about the internal coherence of systems of abstract principles …. Rather, pragmatists counsel attention to the actual workings of law in particular settings in social life ….
hellip;.
Rather than worrying primarily about how a new practice fits with established conceptual structures or rule systems, pragmatists concentrate on satisfying human needs. This focus …. measures the justice of established legal institutions and reform proposals by what they do, rather than whether they cohere with an already existing ideal vision. Joseph William Singer, Property and Coercion in Federal Indian Law: The Conflict Between Critical and Complacent Pragmatism, 63 S. Cal. L. Rev. 1821, 1822(1990). Though I diagnose the bioethics and health law shifts as “pragmatist,” Daniel Farber and Philip Frickey suggest additional possible rubrics in noting that “[a]n impressive array of recent legal commentary has suggested a movement away from grand theory toward something new, variously called ‘intuitionism,’ ‘prudence,’ and ‘practical reason.’ ….[A]ll share some fundamental characteristics …. “ Farber & Frickey, supra note 4, at 1645-46 (footnotes omitted). Of course, some of the new more inductivist approaches in bioethics might try to lend their own names to the diagnosis instead, especially casuistry. My goal is not to adjudicate among these competitors, but to diagnose the larger trend of which they are a part.
16 See supra note 12.
17 Cf Daniel C. K., Chow, A Pragmatic Model of Law, 67 Wash. L. Rev. 755, 757–58 (1992)Google Scholar (contrasting a pragmatic view with a deeper pragmatism).
18 See Joseph M. Healey, Bridging the Gap II, 56 Conn. Med. 703 (1992) (“physicians are expressing their frustration with ethical and legal analysis that seems remote from the practice of medicine …. There needs to be …. an attempt to inform public policy with the experience of the participants.“).
19 See Joseph M. Healey, Health Law in Connecticut: Historical Perspectives, Contemporary Concerns, and Future Directions, 21 Conn. L. Rev. 723, 726-30 (1989) (on “the rise of medical power” [hereinafter Health Law in Connecticut]).
20 See Joseph M. Healey, Moving Beyond Futility, 56 Conn. Med. 270 (1992) (“While the futility issue will remain an important focus, …. he context for discussion is likely to shift to the larger societal level.'’).
21 See Health Law in Connecticut, supra note 19, at 739-40.
22 See id.
23 One could argue, of course, that there are many different ways to do both bioethics and health law, and that we need remote theoreticians as well as those involved in the clinic. While it is certainly true that there are different ways of value, I am arguing in this Article that bioethics and health law grounded in clinical realities and concerned about the fate of vulnerable patients and research subjects is better.
24 See Beauchamp & Childress, supra note 4. Cf. Dworkin, supra note 4, at 946 (“If any work in bioethics may be said to be truly paradigmatic, it is Tom L. Beauchamp's and James Childress’ seminal Principles of Biomedical Ethics.” (citation omitted)).
25 See generally the Belmont Report: Ethical Guidelines for the Protection of Human Ssubjects of Research (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research ed., 1978).
26 See Beauchamp & Childress, supra note 4, chs. 1 & 2,
27 Kuhn, supra note 4, at 5.
28 Edmund D. Pellegrino, The Metamorphosis of Medical Ethics: A 30-Year Retrospective, 269 JAMA 1158 (1993).
29 See Clouser & Gert, supra note 5.
30 See Richardson, supra note 9. Beauchamp and Childress argue that specified principlism is not an alternative but a salutary amendment to their approach. See Beauchamp & Childress, supra note 4, at 28-32, 104-11.
31 See Jonsen & Toulmin, supra note 9.
32 See, e.g., Barry Hoffmaster, Can Ethnography Save the Life of Medical Ethics?, 35 Soc. Sci. & Med. 1421 (1992).
33 See, e.g., Howard Brody, Stories of Sickness (1987). See also Kathryn Hunter, Doctors’ Stories: the Narrative Structure of Medical Knowledge (1991).
34 The literature on care-based approaches to ethics without specific focus on bioethics is voluminous. See, e.g., an Ethic of Care: Feminist and Interdisciplinary Perspectives (Mary Jeanne Larrabee ed., 1993); Jeffrey Blustein, Care and Commitment: Taking the Personal Point of View (1991); Feminist Ethics (Claudia Card ed., 1991); Lawrence Blum, Gilligan and Kohilberg: Implications for Moral Theory, 98 ETHICS 472 (1988); Annette Baier, What Do Women Want in a Moral Theory?, 19 Noûs 53 (1985); Nel Noddings, Caring: a Feminine Approach TO Ethics and Moral Education (1984) [hereinafter “Caring“]; Carol Gilligan, in a Different Voice: Psychological Theory and Women’s Development (1982). On care-based approaches in bioethics, see, for example, Sherwin, supra note 9, at 42-57; Hilde Lindemann Nelson, Against Caring, and Nel Noddings, In Defense of Caring, in 3 J. Cun. Ethics 8 (1992).
My list of challenges to “principlism” is not exhaustive. For example, there is a revival of interest in virtue theory. See, e.g., Pellegrino, supra note 28.
35 See, e.g., Rebecca J. Cook, Feminism and the Four Principles, in Principles of Health Care Ethics, supra note 5, at 193, as well as other essays in that volume. But see Ruth Macklin, Women's Health: An Ethical Perspective, 21 J. L. Med. & Ethics 23 (1993) (defending the adequacy of the four principles for gender analysis).
36 See, e.g., Empirical Research in Medical Ethics (Robert M. Arnold & Lachlan Forrow eds.), 14 Theoretical Med. 195 (1993), and studies cited therein.
37 See “ it Just Ain't Fair”, supra note 9; African-American Perspectives on Biomedical Ethics,supra note 9.
38 One important such study is under way at the Pacific Center for Health Care Ethics at the University of Southern California, resulting thus far in Leslie J. Blackhall et al., Ethnicity and Attitudes Toward Patient Autonomy (1994) (unpublished manuscript, on file with the Pacific Center for Health, Policy and Ethics, University of Southern California Law Center). Another is reported in Celia J. Orona et al., Cultural Aspects of Nondisclosure, 3 Cambridge Q. Healthcare Ethics 338 (1994). See also Jeremy Sugarman et al., Factors Associated with Veterans’ Decisions about Living Wills, 152 Archives Internal Med. 343 (1992); articles in Special Issue, Cross Cultural Medicine: A Decade Later, 157 W. J. Med. 213 (1992).
39 See, e.g., Susan M. Rubin et al., Increasing the Completion of the Durable Power of Attorney for Health Care: A Randomized, Controlled Trial, 271 JAMA 209 (1994); Jaya Virmani et al., Relationship of Advance Directives to Physician-Patient Communication, 154 Archives Internal Med. 909 (1984).
40 See, e.g., Feminism & Bioethics, supra note 9; Feminist Perspectives in Medical Ethics, supra note 9; Sherwin, supra note 9.
41 See, e.g., Dorothy E. Roberts, Reconceiving the Patient: Starting With Women of Color, in Feminism & Bioethics, supra note 9.
42 The feminist and gender-attentive literature is now copious. Collections include Feminist Legal Theory: Foundations (D. Kelly Weisberg ed., 1993); Feminist Legal Theory: Readings in Law and Gender (Katharine T. Bartlett & Rosanne Kennedy eds., 1991 ).
43 This literature too has become abundant. See generally Richard Delgado & Jean Stefancic, Critical Race Theory: An Annotated Bibliography, 79 Va. L. Rev. 461 (1993); Symposium, Minority Critiques of the Critical Legal Studies Movement, 22 Harv. C.R.-C.L. L. Rev. 297 (1987).
44 See, e.g., Marc A. Fajer, Authority, Credibility, and Pre-Understanding: A Defense of Outsider Narratives in Legal Scholarship, 82 Geo. L.J. 1845 (1994); The 200,000 Cards, supra note 14; William N. Eskridge, Jr., Gaylegal Narratives, 46 Stan. L. Rev. 607 (1994); Richard Delgado, On Telling Stories in School: A Reply to Farber and Sherry, 46 Vand. L. Rev. 665 (1993); Telling Stories Out of School, supra note 14; Kathryn Abrams, Hearing the Call of Stories, 79 Cal. L. Rev. 971 (1991); Symposium, Legal Storytelling, 87 Mich. L. Rev. 2073 (1989).
45 I offer an extended discussion in Susan M. Wolf, Introduction: Gender and Feminism in Bioethics, in Feminism & Bioethics, supra note 9.
46 See, e.g., Roger B. Dworkin, Medical Law and Ethics in the Post-Autonomy Age, 68 IND. L.J. 727 (1993); articles in Individualism & Community: The Contested Terrain of Autonomy, Hastings Ctr. Rep., May-June 1994; Marion Danis & Larry R. Churchill, Autonomy and the Common Weal, Hastings Ctr. Rep., Jan.-Feb. 1991, at 25; Charles W. Lidz &Robert M. Arnold, Institutional Constraints on Autonomy, 14 Generations 65 (1990); Daniel Callahan, Autonomy: A Moral Good, Not a Moral Obsession, Hastings Ctr. Rep., Oct. 1984, at 40.
47 See Susan M. Wolf, Health Care Reform and the Future of Physician Ethics, Hastings Ctr. Rep., Mar.-Apr. 1994, at 28, 32 & n.36.
48 For an exploration of this, see Rebecca Dresser, What Bioethics Can Learn from the Women's Health Movement, in Feminism & Bioethics, supra note 9.
49 Exceptions to this include Roberts, supra note 41; Adrienne Asch, Reproductive Technology and Disability, in Reproductive Laws for the 1990s at 69 (Sherrill Cohen & Nadine Taub eds., 1989); and Fred Rosner, The Traditionalist Jewish Physician and Modern Biomedical Ethical Problems, 8 J. Med. & Phil. 225 (1983).
50 See, e.g., Meisel & Roth, supra note 7.
51 For a discussion of the emergence and content of these studies, see Susan M. Wolf, Quality Assessment of Ethics in Health Care: The Accountability Revolution, 20 Am. J. L. & Med. 105, 119-23 (1994 ); Empirical Research in Medical Ethics, supra note 36. These studies use a variety of methodologies; by “empirical” I do not mean to exclude observational studies by medical anthropologists and sociologists. An especially large empirical study now under way is described in Support: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments, 43 J. Clinical Epidemiology V (Supp. 1990).
52 Abby Lippman-Hand & F. Clarke Fraser, Genetic Counseling: Parents’ Responses to Uncertainty, in Risk, Communication, and Decision Making in Genetic Counseling, Part C of Annual Review of Birth Defects, 1978, at 325, 332-34 (Charles J. Epstein et al. eds., 1979).
53 See Nancy K. Rhoden, The Judge in the Delivery Room: The Emergence of Court-Ordered Cesareans, 74 Cal. L. Rev. 1951 (1986).
54 My genetics and obstetrics examples suggest the role of emotions and cognitive strategies in patient and physician decision-making. William James similarly suggests the role of “temperament” in philosophers’ theorizing. See Thomas C. Grey, Hear The Other Side: Wallace Stevens and Pragmatist Legal Theory, 63 S. Cal. L. Rev. 1569, 1588 (1990) (“Almost uniquely among philosophers, James believed that philosophical disputes were the intellectual formulations of temperamental differences …. “ (footnote omitted)).
55 See, e.g., Lesley F. Degner & Jeffrey A. Sloan, Decision Making During Serious Illness: What Role Do Patients Really Want to Play?, 45 J. Clinical Epidemiology 941 (1992); Jack Ende et al., Measuring Patients’ Desire for Autonomy: Decision Making and Information-Seeking Preferences Among Medical Patients, 4 J. Gen. Internal Meo. 23 (1989); William M. Strull et al., Do Patients Want to Participate in Medical Decision Making?, 252 JAMA 2990 (1984). These and other studies are discussed in With a Human Face, supra note 4, at 1091-104.
56 See supra note 38.
57 Specifically, the surrogate is supposed to apply a three-tier decisional standard. She should enforce the patient's express wishes, if known; should otherwise extrapolate from what is known of the patient's wishes and values, in an exercise of substituted judgment; and when not enough is known to ground an exercise of substituted judgment, should decide in the patient's best interests. See, e.g ., Allen E. Buchanan & Dan W. Brock, Deciding for Others: the Ethics of Surrogate Decision Making 93-134 (1989).
58 The feminist literature on each of these reproductive topics is large. Indeed, when Hypatia published two special issues in 1989 devoted to feminism and health care ethics, one entire issue was devoted to reproduction. See Ethics and Reproduction, Hypatia, Fall 1989; Feminist Ethics and Medicine, Hypatia, Summer 1989.
59 See, e.g., Feminism & Bioethics, supra note 9; Leslie Bender, A Feminist Analysis of Physician- Assisted Dying and Voluntary Active Euthanasia, 59 Tenn. L. Rev. 519 (1992); Steven Miles & Allison August, Courts, Gender and “The Right to Die”, 18 L. Med. & Health Care 85 (1990).
60 See, e.g., Barbara Ehrenreich & Diedre English, for Her Own Good: 150 Years of Experts’ Advice to Women (1978).
61 See, e.g., Leslee J. Shaw et al., Gender Differences in the Noninvasive Evaluation and Management of Patients with Suspected Coronary Artery Disease, 120 Annals Internal Med. 559 (1994); Anthony Orencia et al., Effect of Gender on Long-Term Outcome of Angina Pectoris and Myocardial Infarction/Sudden Unexpected Death, 269 JAMA 2392 (1993). See generally Council on Ethical and Judicial Affairs, Gender Disparities in Clinical Decision Making, 266 JAMA 559 (1991), and studies cited therein. But see Anita M. Arnold et al., Gender Differences for Coronary Angioplasty, 74 Am. J. Cardiology 18 (1994) (showing some gender differences that favor women); Daniel B. Mark et al., Absence of Sex Bias in the Referral of Patients for Cardiac Catheterization, 330 New Eng. J. Med. 1101 (1994).
62 See Council on Ethical and Judicial Affairs, supra note 61.
63 See Vivian W. Pinn, Women's Health Research: Prescribing Change and Addressing the Issues, 268 JAMA 1921 (1992).
64 See, e.g ., Funding Health Sciences Research: a Strategy to Restore Balance (Floyd E. Bloom & Mark A. Randolph eds., 1990) (Institute of Medicine report).
65 , See Rosemarie Tong, Feminist Thought: A Comprehensive Introduction 1 (1989) (distinguishing liberal, Marxist, radical, psychoanalytic, socialist, existentialist, and postmodern approaches to feminist work); Alison M. Jaggar, Feminist Politics and Human Nature 8-13 (1983) (discussing liberal feminism, traditional Marxism, radical feminism, and socialist feminism).
66 See, e.g., Beauchamp & Childress, supra note 4, at 85-92.
67 See Rosemarie Tong, Feminine and Feminist Ethics (1993).
68 see Sherwin, supra note 9, at 42-57. See also Nelson, supra note 34. But see Caring, supra note 34.
69 See Lawrence A. Blum, supra note 34.
70 See Sandra Harding, Whose Science? Whose Knowledge? Thinking from Women's Lives 119-33 (1991); Nancy C. M. Hartsock, The Feminist Standpoint: Developing the Ground for a Specifically Feminist Historical Materialism, in Feminism and Methodology: Social Science Issues 157 (Sandra Harding ed., 1987). See also Martha Minow & Elizabeth V. Spelman, In Context, 63 S. Cal. L. Rev. 1597 (1990).
71 See Mary B. Mahowald, On Treatment of Myopia: Feminism, Standpoint Theory, and Bioethics, in Feminism & Bioethics, supra note 9.
72 See Janet Farrell Smith, Communicative Ethics in the Physician-Patient Relationship, in Feminism & Bioethics, supra note 9.
73 Sherwin, supra note 9, at 10, 222-40.
74 Elizabeth V. Spelman, Inessential Woman: Problems of Exclusion in Feminist Thought (1988).
75 See African-American Perspectives, supra note 9; “it Just Ain't Fair,” supra note 9.
76 Anita L. Allen, Book Review of African-American Perspectives on Biomedical Ethics, 104 Ethics 404 (1994).
77 See Jorge L. A. Garcia, African-American Perspectives, Cultural Relativism, and Normative Issues: Some Conceptual Questions, in African-American Perspectives, supra note 9, at 11.
78 On the effect of multiple factors and what she calls “intersectionality,” see Kimberlé Crenshaw, Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics, 1989 U. Chi. Legal F. 139 (1989).
79 Dorothy Roberts justifiably argues that only some of that suffering-primarily the Tuskegee Syphilis study-has been acknowledged thus far by bioethicists. Roberts, supra note 41. On the horrors of medical treatment and experimentation on African Americans in the time of slavery, see, for example, Todd L. Savitt, The Use of Blacks for Medical Experimentation and Demonstration in the Old South, 48 J. s. Hist. 331 (1982); Todd L. Savitt, medicine and Slavery: the Diseases and Health Care of Blacks in Antebellum Virginia (1978). For further historical analysis, see also Vanessa Northington Gamble, A Legacy of Distrust: African Americans and Medical Research, 9 AM. J. Preventive Med. 35 (1993); Vernellia R. Randall, Racist Health Care: Reforming an Unjust Health Care System to Meet the Needs of African-Americans, 3 Health Matrix 127, 146-48 (1993). On Tuskegee, see, for example, James H. Jones, Bad Blood: the Tuskegee Syphilis Experiment (1981).
80 See, e.g., John Z. Ayanian et al., Racial Differences in the Use of Revascularization Procedures After Coronary Angiography, 269 JAMA 2642 ( 1993); Jeff Whittle et al., Racial Differences in the Use of Invasive Cardiovascular Procedures in the Department of Veterans Affairs Medical System, 329 New Eng. J. Med. 621 (1993). See generally Council on Ethical and Judicial Affairs, Black-White Disparities in Health Care, 263 JAMA 2344 (1990), and studies cited therein.
81 See Council on Ethical and Judicial Affairs, supra note 80.
82 See Nancy E. Kass, Reproductive Decision Making in the Context of HIV: The Case for Nondirective Counseling, in AIDS, Women and the Next Generation: Towards a Morally Acceptable Public Policy for HIV Testing of Pregnant Women and Newborns 308 (Ruth R. Faden et al. eds., 1991).
83 See supra note 38.
84 See Roberts, supra note 41. As Roberts’ title suggests, she abjures the common strategy of developing an analysis of medicine's mistreatment of women and then as a near afterthought extending the analysis to women of color or people of color. Instead, her starting point is the experiences of women of color, a perspectival shift of tremendous consequence, she argues.
85 See supra note 6 and accompanying text.
86 On surrogates research, see infra notes 93-94 and accompanying text.
87 On directives research, see infra notes 88-92 and accompanying text.
88 See, e.g., Joan M. Teno et al., The Impact of the Patient Self-Determination Act's Requirement that States Describe Law Concerning Patients’ Rights, 21 J. L. Med. & Ethics 102 (1993); Joanne Lynn & Joan M. Teno, After the Patient Self-Determination Act: The Need for Empirical Research on Formal Advance Directives, Hastings Ctr. Rep., Jan.-Feb. 1993, at 20. On the PSDA generally, see Susan M. Wolf et al., Sources of Concern About the Patient Self-Determination Act, 325 New Eno. J. Med. 1666 (1991).
89 See Alan Meisel, the Right to Die§ 10.7 (1989 & Supp. 1993).
90 See Wolf et al., supra note 88, at 1666-67 and studies cited therein.
91 See Ashwini Sehgal et al., How Strictly Do Dialysis Patients Want Their Advance Directives Followed?, 267 JAMA 59 (1992).
92 See Marion Danis et al., A Prospective Study of Advance Directives for Life-Sustaining Care, 324 New Eng. J. Med. 882, 884-85 (1991).
93 See supra page 404.
94 See Allison B. Seckler et al., Substituted Judgment: How Accurate Are Proxy Predictions?, 115 Annals Internal Med. 92 (1991); Tom Tomlinson et al., An Empirical Study of Proxy Consent for Elderly Persons, 30 Gerontologist 54 (1990); Nancy R. Zweibel, Treatment Choices at the End of Life: A Comparison of Decisions by Older Patients and Their Physician-Selected Proxies, 29 Gerontologist 615 (1989); Joseph G. Ouslander et al., Health Care Decisions Among Elderly Long-Term Care Residents and Their Potential Proxies, 149 Archives Internal Med. 1367 (1989); Richard F. Uhlmann et al., Physicians’ and Spouses’ Predictions of Elderly Patients’ Resuscitation Preferences, 43 J. Gerontology M115 (1988).
95 S. Van McCrary et al., Treatment Decisions for Terminally III Patients: Physicians’ Legal Defensiveness and Knowledge of Medical Law, 20 L. Med. & Health CARE 364 (1992). For additional analysis of physicians’ perceptions of law see, for example, Henry S. Perkins et al., Impact of Legal Liability, Family Wishes, and Other “External Factors” on Physicians’ Life-Support Decisions, 89 AM. J. Med. 185 (1990); Marshall B. Kapp & Bernard Lo, Legal Perceptions and Medical Decision Making, 64 Milbank Q. (Supp. 2) 163 (1986). There is a significant literature on physicians practicing “defensive medicine” to minimize perceived legal exposure. See, e.g., Barry M, Manuel, Professional Liability: A No-Fault Solution, 322 NEW ENG. J. Med. 627 (1990).
96 See Charles W. Lidz et al., Informed Consent: A Study of Decisionmaking in Psychiatry (1984). See also Pauls. Appelbaum et al., Informed Consent: Legal Theory and Clinical Practice ( 1987); Meisel & Roth, supra note 7. An important recent contribution on informed consent is Peter H. Schuck, Rethinking Informed Consent, 103 YALE L.J. 899 (1994). See also Marjorie Maguire Shultz, From Informed Consent to Patient Choice: A New Protected Interest, 95 YALE L.J. 219 (1985).
97 Jay Katz, Informed Consent-A Fairy Tale? Law's Vision, 39 U. Pitt. L. Rev. 137 (1977).
98 That deepened skepticism is apparent even in the informed consent area. See, e.g., With a Human Face, supra note 4.
99 The Rube Goldberg analogy risks making the process sound linear, but that process may, of course, be full of loops and feedback.
100 See Roberts, supra note 41.
101 See, e.g., Rubin et al., supra note 39.
102 See, e.g., Randall, supra note 79.
103 Cf. Miles & August, supra note 59, at 91 (finding gender bias among judges construing evidence of women's treatment preferences).
104 See, e.g., Language of the Law, supra note 2;. With a Human Face, supra note 4. Challenges to patients’ rights have been frequent in the history of bioethics, though less so in health law. See, e.g., John Ladd, Legalism and Medical Ethics, in Contemporary Issues in Biomedical Ethics l (John W. Davis et al. eds., 1978).
105 See West, supra note 12, at 182 (“American pragmatism is widely regarded as the distinctive American philosophy …. “).
106 See, e.g., Philosophical Writings of Peirce (J. Buchler ed., 1955).
107 See, e.g., William James, Pragmatism (1975).
108 See, e.g., John Dewey, Art as Experience (1934); John Dewey, Experience and Nature (1925).
109 Minow & Spelman, supra note 70, at 1610.
110 Farber, supra note 12, at 1341 (citation omitted).
111 See WEST, supra note 12, at 3, 196-97; Minow & Spelman, supra note 70, at 1610-11.
112 Minow & Spelman, supra note 70, at 1611 n.52.
113 See, e.g., Margaret Jane Radin, The Pragmatist and the Feminist, 63 S. CAL. L. REV. 1699 (1990); Farber, supra note 12.
114 See, for example, Symposium on the Renaissance of Pragmatism in American Legal Thought, supra note 12, and criticism of pragmatism by Judge Richard A. Posner in that symposium and Ronald Dworkin in LAw's EMPIRE (1986).
115 See Beauchamp & Childress, supra note 4, at 541. Nor does their chapter on “Types of Ethical Theory,” where they canvass a wide array of alternatives, some inductivist, include pragmatism. Id. at 44-119. The closest they come there is in explaining that casuistry “focuses on practical decisionmaking in particular cases.” Id. at 92.
116 One that does is Williams, supra note 12, at 1021. See also William J. Wins lade, Ethics Consultation: Cases in Context, 57 Alb. L. Rev. 679, 683 (1994) (acknowledging his study of pragmatism); Leonard M. Fleck, Just Health Care Rationing: A Democratic Decisionmaking Approach, 140 U. Pa. L. Rev. 1597, 1600 (1992); Sharron Dalton, What Are the Sources and Standards of Ethical Judgment in Dietetics?, 91 J. Am. Dietetic Ass'N 545 (1991). Jonsen and Toulmin include a discussion of pragmatism in the Abuse of Casuistry, supra note 9, at 281-83. Mary Briody Mahowald does as well in Women and Children in Health Care: an Unequal MajoritY 264-65 (1993).
117 See, e.g., West, supra note 12; Radin, supra note 113, at 1705.
118 Some of those already debating pragmatism have actually ventured into bioethics and health law domains. See, e.g., Martha Minow, Making ALL the Difference: Inclusion, Exclusion, and American Law 312-49 (1990) (on forgoing life-sustaining treatment); Margaret Jane Radin, Market-Inalienability, 100 Harv. L. Rey. 1849 (1987) (discussing inter alia surrogate motherhood and blood donation).
119 See Cornel West, The Limits of Neopragmatism, 63 S. Cal. L. Rev. 1747, 1748 (1990); Singer, supra note 15, at 1823-26.
120 See Jonsen, supra note 9; Arras, supra note 9.
121 See, e.g., Radin, supra note 113, at 1708-09 n.26, 1720-22. Radin further quotes William James: “One misunderstanding of pragmatism is …. hat it loves intellectual anarchy as such and prefers a sort of wolf-world absolutely unpent and wild and without a master or a collar to any philosophical class-room product, whatsoever.” Id. at 1715 (quoting William James, Pragmatism 128 (1975)).
122 Minow & Spelman, supra note 70, at 1632-33.
123 WEST, supra note 12, at 237.
124 On the futility debate, see, for example, Robert D. Truog et al., The Problem with Futility, 326 New Eng. J. Med. 1560 (1992); Daniel Callahan, Medical Futility, Medical Necessity: The Problem-Without-A-Name, Hastings Ctr. Rep., July-Aug. 1991, at 30; Lawrence J. Schneiderman et al., Medical Futility: Its Meaning and Ethical Implications, 112 Annals Internal Med. 949 (1990); John D. Lantos et al., The Illusion of Futility in Clinical Practice, 87 AM. J. Med. 81 (1989); Susan M. Wolf, Conflict Between Doctor and Patient, 16 Law Med. & Health Care 197 (1988); Stuart J. Youngner, Who Defines Futility?, 260 JAMA 2094 (1988).
125 See Farber, supra note 12, at 1343-48.
126 See Dworkin, supra note 114, at 95, 151, 378.
127 Farber, supra note 12, at 1347-48.
128 See, e.g., Steven D. Smith, The Pursuit of Pragmatism, 100 Yale L.J. 409, 434 (1990) (“[p]ragmatists …. stress the importance of ‘dialogue’ in evaluating experience and in constructing and criticizing theories” (footnote omitted)).
129 See Susan M. Wolf, Toward a Theory of Process, 20 Law Med. & Health Care 278 (1992); Susan M. Wolf, Ethics Committees and Due Process: Nesting Rights in a Community of Caring, 50 Mo. L. REV. 798 (1991).
130 See Arthur Caplan, Rationing Medicaid Would Hurt Kids Most, St. Paul Pioneer Press, Sept. 9, 1990, at G3; Arthur Caplan, The Unkindest Cut Goes to the Kids, St. Paul Pioneer Press, Oct. 23, 1989, at IE.
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