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Patient Accountability and Quality of Care: Lessons From Medical Consumerism and the Patients’ Rights, Women’s Health and Disability Rights Movements

Published online by Cambridge University Press:  24 February 2021

Marc A. Rodwin
Marc A. Rodwin*
Affiliation:
School of Public and Environmental Affairs, Indiana University-Bloomington; University of Virginia; Oxford University; Brandeis University
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Extract

This article contrasts the prevailing model for assessing and improving medical care—the quality of care paradigm—with an alternative approach—the patient accountability paradigm. The first approach is technocratic: it measures and promotes the quality of medical care through technical and objective means. It relies on outside experts, analysis of data and protocols, and impersonal judgements of professionals to guide decisions. The second approach guides physicians and providers and subjects them to patient control. It enlists the participation of patients and consumers to evaluate and change the medical care system and to promote the rights and choices of patients and consumers. The strengths and limitations of the patient accountability approach are illustrated by four movements: 1) the patients’ rights movement; 2) medical consumerism; 3) the women’s health movement; and 4) the disability rights movement.

Type
Articles
Information
American Journal of Law & Medicine , Volume 20 , Issue 1-2: Quality of Care and Health Reform: Complementary or Conflicting , 1994 , pp. 147 - 167
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1994

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References

1 For an historical overview see K.N. Williams & Robert H. Brook, Quality Measurement and Assurance: A Literature Review, Health & Med. Care Services Rev., May/June 1978, 3-15; Kathleen N. Lohr & Robert H. Brook, Quality Assurance in Medicine, Am. Behav. Sci., Mayjune 1984, at 583-607; John J. Williamson Future Directions for Quality Assurance: Lessons from the Health Accounting Experience, Inquiry, Spring 1988, at 67-77.

2 See, e.g., Quality Review Bulletin and Quality PROGRESS. Quality assurance is also widely reported on in health, policy, and medical journals with a broader or different focus.

3 For a general discussion of continuous quality improvement, see William E. Deming, Out of Crisis (1986); D.A. Garvin, Manacing Quality: The Stratecic And Competitive Edge (1988); J.M. Juran Et. Al., Quality Control Handbook (4th ed. 1988). For a discussion of continuous quality improvement in health care see B. Batalden & E.D. Buchanan, Industrial Models of Quality Improvements, in Providing Quality CARE: The Challence to Clinicians. Philadelphia: The American College of Physicians (N. Goldfield & D.B. Nash Eds., 1989); Berwick, Donald M., Continuous Improvement as an Ideal in Health Care, 320 New Eng. J. Med. 53 (1989)Google Scholar.

4 See Bruce C. Vladeck, Quality Assurance Through External Controls, Inquiry, Spring 1988, 100-07.

5 Avedis Donabedian, Explorations of Quality Assessment and Monitoring Vol I-III; Avedis Donabedian, The Definition of Quality and Approaches to Its Assessment (1988); Avedis Donabedian, Methods and Finding of Quality Assessment and Measurement: An Illustrated Analysis (1985); Avedis Donabedian, Criteria and Standards for Quality Assessment and Monitoring, Quality Rev. Bull., March 1986, at 99-108; Avedis, Donabedian, The Quality of Care: How Can it Be Assessed?, 260 JAMA 1743 (1988)Google Scholar.

6 Wennberg, John E., On Patient Need, Equity, Supplier-Induced Demand, and the Need to Assess the Outcome of Common Medical Practices, 25 Med. Care 512 (1985)Google Scholar.

7 See Medicare: A Stratecy for Quality Assurance 45-68 (Kathleen N. Lohr ed., 1990) [hereinafter Medicare: A Strategy for Quality Assurance] ; Jencks, Stephen S. & Gail, Wilinsky, The Health Care Quality Improvement Initiative: A New Approach to Quality Assurance in Medicare, 268 JAMA 900 (1992)Google Scholar.

8 Incentives can also be used to encourage adequate or good providers to seek superior performance. Medicare: A Strategy for Quality Assurance, supra note 7, at 16, 47.

9 Id. at 50.

10 Id.

11 See Haug, Marie R. & Sussman, Marvin B., Professional Autonomy and the Revolt of the Client, 17 Soc. Probs. 153 (1969)Google Scholar.

12 See generally Marc A. Rodwin, Medicine, Money and Morals: Physicians’ Conflicts of Interest (1993) [hereinafter Rodwin: Medicine, Money and Morals]. For a discussion of conflicts of interest in the peer review of medical and scientific journals which can affect the perceptions of professionals, see Rodwin, Marc A., Inside Information and Peer Review: A Legal and Ethical Analysis, 3 Ethics & Behav. 138 (1993)Google Scholar.

13 For a Selection of Codes of Medical Ethics Including the Hippocratic Oath, See Ethics in Medicine: Historical Perspectives and Contemporary Concerns (StanleyJoel Reiser et al. eds., 1977).

14 For a discussion of fiduciary law applicable to physicians, see Rodwin, supra note 12, at ch. 7, 8. See also Frances H. Miller, Secondary Income from Recommended Treatment: Should Fiduciary Principles Constrain Physician Behavior?, in The New Health Care for Profit: Doctors and Hospitals in a Competitive Environment 153 (Bradford H. Gray ed., 1983). For a discussion of fiduciary law in general, see Robert, Cooter & Freedman, Bradley J., The Fiduciary Relationship, its Economic Character and Legal Consequences, 66 N.Y.U.L. REV. 1045 (1991)Google Scholar; Tamar, Frankel, Fiduciary Law, 71 CAL. L. REV. 795 (1983)Google Scholar; Scott, Austin W., TheFiduciary Principle, 37 CAL. L. REV. 539 (1949)Google Scholar; L.S., Sealy, Fiduciary Relationships, 1962 Cambridce L.J. 69 (1962)Google Scholar; L.S., Sealy, Some Principles of Fiduciary Obligation, 1963 Cambridge L.J. 119 (1963)Google Scholar; Weinrib, Ernest J., The Fiduciary Obligation, 25 U. Toronto L.J. 1 (1975)Google Scholar.

15 See Rodwin, Medicine, Money and Morals, supra note 12.

16 For a review of existing laws and institutions that are .used to hold physicians accountable, see Rodwin, Medicine, Money and Morals, supra note 12, at 11-34, 162-75.

17 For a discussion of the use of the concepts of exit, voice and loyalty see Albert O. Hirschman, Exit, Voice, and Loyalty; Responses to Decune in Firms, Organizations, and States (1970); Albert O. Hirschman, Exit and Voice: An Expanding Sphere of Influence, in Rival Views of Market Society and Other Recent Essays 77-101 (1986); Brian, Barry, Review Article: “Exit, Voice, and Loyalty”, 4 Brit. J. Pol. Sci. 79 (1974)Google Scholar; A.H., Birch, Economic Models in Political Science: The Case of “Exit, Voice, and Loyalty', 5 Brit. J. Pol. Sci. 69 (1975)Google Scholar; Albert O. Hirschman, “Exit, Voice, and Loyalty“: Further Reflections and a Survey of Recent Contributions, Soc. Sci. Info., Feb. 1974, at 7-26, reprinted in Milbank Q., Summer 1980, at 430-53; Rudolph Klein, Models of Man and Models of Policy: Reflections on Exit, Voice, and Loyalty Ten Years Later, Milbank Q., Summer 1980, at 416-29.

In recent years there have been many efforts to increase the use of citizen and consumer voice as a way to improve the governmental process. For a discussion of representing consumers as a way to improve the quality of federal regulations, see Rodwin, Marc A., Can Bargaining and Negotiation Change the Administrative Process?, 3 Environmental Impact Assessment Rev. 373 (1982)Google Scholar; see also Lawrence, Susskind & G., McMahon, The Theory and Practice of Negotiated Rulemaking, 3 Yale J. on Reg. 133 (1985)Google Scholar.

18 Georce J. Annas, Judcing Medicine 4-26 (1988).

19 The two earliest and most influential accounts of such dangerous experimentation without consent are by Beecher and Pappworth. Beecher, Henry E., Ethics in Clinical Research, 274 New Eng. J. Med. 1354 (1966)Google Scholar; M.H. Pappworth, Human Guinea Pigs: Experimentation on Man (1967).

20 Individuals do not have a general right to health care regardless of ability to pay, except to receive emergency care from hospitals. See The Emergency Medical Treatment and Labor Act, 42 U.S.C. § 1395dd; see also Joan Steiber & Sidney Wolfe, Public Citizen Health Research Group, Patient Dumping Continues in Hospital Emercency Rooms: An Updated Report on the Department of Health and Human Services’ Enforcement of the Federal Patient Dumping Law (1993) [hereinafter Steiber & Wolfe, Patient Dumping Continues].

21 Some consumer guides have been designed to help patients get their medical records. See Bruce Samuels & Sidney M. Wolfe, Public Citizen 's Health Research Group, Medical Records: Getting Yours: A Consumer's Guide to Obtaining and Understanding the Medical Record (1992).

22 One physician has even concluded that medical information is disseminated so widely the idea of confidentiality has lost its meaning. See Mark, Siegler, Confidentiality in Medicine: A Decrepit Concept, 307 New Eng. J. Med. 1518 (1982)Google Scholar.

23 Miyaji, Naoko T., The Power of Compassion: Truth-Telling Among American Doctors in the Care of Dying Patients, 36 Soc. Sci. & Med. 249 (1993)Google Scholar.

24 See, e.g., Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261 (1990); Superintendent of Belchertown State Sch. v. Saikewicz, 370 N.E.2d 417 (Mass. 1977); In reQuinlan, 355 A.2d 647 (NJ.), cert, denied, 429 U.S. 922 (1976).

25 See generally George J. Annas, The Rights of Patients (1992); George J. Annas, The Rights of Hospital Patients: The Basic ACLU Guide to a Hospital Patient's Rights (1975).

26 For a history of this process, see David J. Rothman, Human Experimentation and the Origins of Bioethics in the United States, in Social Science Perspectives on Medical Ethics 185-200 (George Weisz ed., 1990); see also David Rothman, Strancers at the Bedside; A History of How Law and Bioethics Transformed Medical Decision Making (1991).

27 Jay Katz, The Silent World of Doctor and Patient 59-84 (1984). For a review of the law and history of informed consent see Ruth R. Faden & Tom L. Beauchamp, A History and TheORY of Informed Consent (1987); Paul S. Applebaum Et. Al., Informed Consent: Lecal Theory and Clinical Practice (1984).

28 Pratt v. Davis, 79 N.E. 562, 563-64 (111. 1906).

29 Schloendorff v. Society of New York Hosp., 105 N.E. 92 (N.Y. 1914).

30 Hunt v. Bradshaw, 88 S.E.2d 762 (N.C. 1955).

31 Canterbury v. Spence, 464 F.2d 772 (D.C. Cir. 1972), cert, denied, 409 U.S. 1064 (1972); Salgo v. Leland Stanford Jr. Univ. Bd. of Trustees, 317 P.2d 1093 (Cal. Dist. Ct. App. 1960); Natanson v. Kline, 350 P.2d 1093 (Kan. 1960).

32 See generally Robert M. Veatch, A Theory of Medical Ethics (1981).

33 For an overview of this field, see Warren T. Reich, Encyclopedia of Bioethics (1987). A second edition of the encyclopedia is forthcoming. See also supra note 27.

34 I follow Lawrence M. Friedman in using the term “legalization” to describe the process by which law brings increasing numbers of issues into court and spreads its influence to places it has not penetrated before. Friedman, Lawrence M., American Law: An Introduction 78 (1984)Google Scholar.

35 See Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261 (1990); Superintendent of Belchertown State Sch. v. Saikewicz, 370 N.E.2d 417 (Mass. 1977); In re Karen Quinlan, 355 A.2d 647 (N.J.), cert, denied, 429 U.S. 922 (1976).

36 Cruzan, 497 U.S. at 261.

37 The Patient Self-Determination Act, 42 U.S.C. 1395cc (f) (1) (A) (i) (1993); see also Wolfe, Susan M. et al., Sources of Concern About the Patient Self-Determination Act, 325 New ENG. J. Med. 1666 (1991)Google Scholar.

38 For an overview, see George J. Annas, The Rights of Hospital Patients (1975).

39 See The Emergency Medical Treatment and Labor Act, 42 U.S.C. § 1395dd(a)-(b) (1988); see also Steiber & Wolfe, Patient Dumping Continues, supra note 20.

40 For a summary of some of these developments, see George J. Annas, Standard of Care: The Law of American Bioethics (1993).

41 Sidney H. Croog & Sol Levine, Quality of Life and Health Care Interventions, in Handbook of Medical Sociology (Howard E. Freedman & Sol Levine eds., 1989); Dan Brock, Quality of Life Measures in Health Care and Medical Ethics, in The Quality of Life (Martha Nussbaum & Amartya Sen. eds., 1993).

42 Much of the discussion of medical consumerism assumes that patients are motivated by self-interest. For a discussion of alternative motivations in health care, particularly prevention, see Rodwin, Marc A., Preventing AIDS: Self-interest and Public Spirit, 4 AIDS & Pub. Pol'y J. 131 (1989)Google Scholar ; For a general discussion of medical consumerism, see Judith, Hibbard & Edward, Weeks, Consumerism in Health Care: Prevalence and Predictors, in 25 Med. Care 1019 (1989)Google Scholar.

43 For a discussion of the consumer movement see Thomas W. Maloney & Barbara Paul, The Consumer Movement Takes Hold in Medical Care, Health Aff., Winter 1991, at 268. See also Marie, Haug & Bebe, Lavin, Consumerism in Medicine: Challenging Physician Authority 83 (1983)Google Scholar.

44 See Eliot, Friedson, Prepaid Group Practice and the New “DemandingPatient”, 51 Milbank Q. 473 (1973)Google Scholar [hereinafter Friedson, Prepaid Group Practice]; Eliot, Friedson, Client Control and Medical Practice, 65 Am. J. Soc. 374 (1959)Google Scholar [hereinafter Friedson, Client Control].

45 See generally Barry Furrow Et Al., Health Law (1994).

46 Goldfarb v. Virginia State Bar, 421 U.S. 773, 788 (1975).

47 But see American Medical Ass'n v. FTC, 638 F.2d 443, 448 (2d Cir. 1980), affd, 455 U.S. 676 (1982) (per curiam) (holding that the AMA's effort at dropping provisions that prohibited advertising was insufficient).

48 See Arrow, Kenneth J., Uncertainty and the Welfare Economics of Medical Care, 53 Am. Econ. Rev. 941, 964-65 (1963)Google Scholar.

49 Altaian, Stuart H. & Rodwin, Marc A., Half-Way Competitive Markets and Ineffective Regulation: The American Health Care System, 13 J. J. Health Pol., Pol'y & L. 323, 324 (1988)Google Scholar; see also Hibbard, Judith H. & Week, Edward C., Consumers in a Competition-Based Cost Containment Environment, 9 J. of Pub. Health Pol'y 233 (1988)Google Scholar.

50 Ron Winslow, Data Spur Debate on Hospital Quality, Wall ST. J., May 24, 1990, at Bl.

51 See, e.g., America's Best Hospitals, U.S. News & World Rep., Apr. 30, 1990, at 51-60.

52 Art Jahnke, The Doctors the Nurses Go to, Boston Mag, Oct. 1990, at 77.

53 A collection of these articles has been published as a book. Consumer Reports, How to Resolve The Health Care Crisis: Affordable Protection for All Americans (1992).

54 Sidney Wolfe Et. Al., Public Citizen's Health Research Group, 10,289 Questionable Doctors (1993).

55 Linda Oberman, Data Measuring Quality Advances, Am. Med. News, Jan. 17, 1993, at 2.

56 Health Security Act, (V)(B)(1). The Health Security Act was introduced November 20, 1993 by Congressman Gephardt in the House of Representatives as H.R. 3600 and by Senator Mitchell in the Senate as S. 1757. The Clinton health care legislation has spurred interest in promoting mechanisms to make health care organizations responsive to consumers. For a discussion of these issues, see Shoshana Sofaer, Informing and Protecting Consumers Under Managed Competition, Health Aff., Supp. 1993, at 76; Walter Zelman, Who Should Govern Purchasing Cooperatives?, Health Aff., Supp. 1993, at 49.

57 For a discussion of the limitation of using disclosure to promote the interests of patients that draws on the experience of consumers in other contexts, see Marc. A., Rodwin, Physicians’ Conflicts of Interest: The Limitations of Disclosure, 321 New Eng. J. Med. 1405 (1989)Google Scholar. Nonetheless, many commentators advocate the disclosure of physician economic incentives as a way to promote the interests of consumers. See, e.g., Levinson, Douglas F., Toward Full Disclosure of Referral Restrictions and Financial Incentives by Prepaid Health Plans, 317 New Eng. J. Med. 1729 (1987)Google Scholar.

58 Consumer Federation of America, Public Opinion About Health Care Purchases: Costs, Ease of Shopping and Availability (1989).

59 See Reade, Julia M. & Ratzan, Richard M., Access to Information —Physicians’ Credentials and Where You Can't Find Them, 321 New ENG. J. Med. 466 (1989)Google Scholar.

60 See Friedson, Prepaid Group Practice, supra note 44, at 473.

61 These walk-in centers, dubbed “doc in a box” in the trade have spread to many parts of the country. Some, such as Health Stop are national chains. For a discussion of a private practice built on home care/ house calls, see Arthur J. Samuels, A New Concept for Health Care Reform: Comprehensive Managed Medical Care in Patients’ Home By Internists (paper presented at the 1994 Annual Meeting of the American Geriatrics Society and the Association for Aging Research, Los Angeles, May 19-22 1994) (on file with author). See also]. Portnow & A. Samuels, Home Care, in The Practice of Geriatrics (E. Calkins et al. eds., 1992).

62 U.S. Health Care is one of the first HMOs to make this a standard feature of their management. See Neil Schlackman, Integrating Quality Assessment and Physician Incentive Payment, Quality Rev. Bull., Aug. 1989, at 234, 236.

63 For a discussion of his work, see Thomas W. Maloney & Barbara Paul, The Consumer Movement Takes Hold in Medical Care, Health Aff., 1991, at 272.

64 See Stewart, Anita L., Functional Status and Weil-Being of Patients with Chronic Conditions: Results from the Medical Outcomes Study, 262 JAMA 907 (1989)Google Scholar; Tarlov, Alvin R. et al., The Medical Outcomes Study: An Application of Methods for Monitoring Results of Medical Care, 262 JAMA 925 (1989)Google Scholar.

65 See Maloney & Paul, supra note 63, at 272-73. The work of Professors Ware and Wennberg are part of the Picker/Commonwealth Fund Patient Centered Care Program.

66 For a review of the literature, see Croog & Levine, supra note 41, at 508-528; see also Karen Dunnell & Ann Cartwright, Medicine Takers, Prescribers, and Hoarders (1972).

67 Margaret Gerteis Et. Al., Through the Patient's Eyes: Understanding and Promoting Patientcentered Care (1993); Thomas, Delbanco, Enriching the Doctor-Patient Relationship by Inviting the Patient's Perspective, 116 Annals of Internal Med. 1414, 1414-18 (1992)Google Scholar; Paul D. Cleary et al., Patients Evaluate Their Hospital Care: A National Survey, Health Aff., Winter 1991, at 255.

For discussion of related approaches, see Nancy Moore & Henrietta Komras, Patient-Focused Healing; Integrating Caring And Curing in Health Care (1993).

68 James A. Morone, The Democratic Wish 253-321 (1990); Friedson, Client Control, supra note 44.

69 For an early book length history, see Sheryl B. Ruzek, The Women's Health Movement: Feminist Alternatives to Medical Control (1978); see also Helen, Marieskind, The Women's Health Movement, 5 Int'l J. Health SERVICES 217 (1975)Google Scholar. For a more recent analysis, see Zimmerman, Mary K., The Women's Health Movement: A Critique of Medical Enterprise and the Position of Women, in Analyzing Gender: A Handbook of Social Science Research 442Google Scholar (Bess B. Hess & Myra Marx Ferree eds., 1983); Lesley, Doyal, Women, Health and the Sexual Division of Labor: A Case Study of the Women's Health Movement in Britain, 13 Int'l J. Health Services 373 (1983)Google Scholar; Judy Norsigian, The Women's Health Movement in the United States (1991) (Paper presented at the Symposium Our Bodies, Our Medicine: Autonomy in Medical Care); Sandra Morgan, Into Our Own Hands: The Women's Health Movement: 1970-1990 (forthcoming).

70 Catherine Kohler Riessman, Women and Medicalization: A New Perspective, 14 Soc. Pol'y 3, 6 (Summer 1983).

71 See generally id.; The Boston Women's Health Book Collective, The Politics of Women and Medical Care, in The New Our Bodies, Our Selves (1992); Beatrice S. Levin, Women and Medicine (1980).

72 Zimmerman, supra note 69.

73 Id. at 445.

74 Pamela S. Eakins, The American Way of Birth (1986); LEVIN, BEATRICE S., Women and Medicine 162 (1980)Google Scholar; LEAVITT, JUDITH W., Brought to Bed: Childbearing in America: 1750 TO 1950 65 (1986)Google Scholar; Ingrid Van Tuinen & Sidney M. Wolfe, Unnecessary Cesarian Sections: Halting A National Epidemic (1992); Roos, Noralou P., Hysterectomy: Variations in Rates Across Small Areas and Across Physicians’ Practices, 74 Am. J. Pub. Health 327 (1984)Google Scholar; Carol, Sakala, Medically Unnecessary Cesarean Births: Introduction to a Symposium, 37 Soc. Sci. & Med. 1177 (1993)Google Scholar [hereinafter Sakala, Medically Unnecessary Cesarean Births]; Carol, Sakala, Midwifery Care and Out-of-Hospital Birth Settings: How Do They Reduce Unnecessary Cesarean Section Births?, 37 Soc. Sci. & Med. 1233 (1993)Google Scholar [hereinafter Sakala, Midwifery Care]; Centers for Disease Control, Rates of Cesarian Delivery — United States, 42 Morbidity & Mortality Wkly. Rep. 286 (1991); Too Many Cesarians, Consumer Reps., Feb. 1991, at 120.

75 Mutryn, Cynthia S., Psychosocial Impact of Cesarean Section on the Family: A Literature Review, 37 Soc. Sci. & Med. 1271 (1993)Google Scholar; E.L., Shearer, Cesarean Section: Medical Benefits and Costs, 37 Soc. Sci. & Med. 1223 (1993)Google Scholar.

76 Mary Lynn M. Luy, What's Behind Women's Wrath Toward Gynecologists, Modern Med., Oct. 14, 1974, at 17.

77 See supra note 74.

78 I. Gladstone, Other Aspects of the Abortion Problem: Psychological Aspects, in Abortion in the United States (M. Calderone ed., 1958).

79 Zimmerman, supra note 60, at 451-52.

80 See Barbara, Bernstein & Robert, Kane, Physicians’ Attitudes Toward Female Patients, 19 Med. Care 600 (1981)Google Scholar; Howell, Mary C., What Medical Schools Teach About Women, 291 New Eng. J. Med. 304, 304–307 (1974)CrossRefGoogle Scholar.

81 Novak, Edmund R., Novak's Textbook of Gynecology 847, 849, 851 (1981)Google Scholar.

82 J., ROBERT WILLSON Et. Al., Obstetrics and Gynecology 51 (6th ed. 1979).Google Scholar

83 See generally Zola, Irving K., Medicine as an Institution of Social Control, 20 Soc. Rev. 487 (1972)Google Scholar.

84 See Reissman, supra note 70, at 4-5.

85 Linda Gordon, Woman's Body, Woman's Right: A Social History of Birth Control in America 160-65 (1976).

86 Levin, supra note 74; Mary Ann Elston, Medicine as ‘Old Husbands’ Tales': The Impact of Feminism, in Men's Studies Modified: The Impact of Feminism on The Academic Disciplines (Dale Spender ed., 1981); Barbara Ehrenreich & Deirdre English, for her Own Good: 150 Years of the Experts’ Advice to Women (1978); Riessman, supra note 70.

87 Audrey Gartner, A Typology of Women's Self-Help Groups, SOC. POL'Y, Winter 1985, at 25. For a more general discussion of the role of self-help groups in social movements see Alfred H. Katz, Self-HELP in America: A Social Movement Perspective (1992); see also Alfred H. Katz, & Eugene I. Bender, Self-Help Groups in Western Society: History and Prospects, 12 J. Applied Behav. Sci. 265-82 (1976). However, some commentators have argued that the self-care movement is not a social movement and has pacified activists. See, e.g., DeFriese, Gordon H. et al., From Activated Patient to Pacified Activist: A Study of the Self-Care Movement in the United States, 29 Soc SCI. & Med. 195 (1989)Google Scholar.

88 Laura Punnet, The Politics of Menstrual Extraction, in From Abortion to Reproductive Freedom: Transforming a Movement (Marlene Gerber Fried ed., 1990); see also Ruzek, supra note 69.

89 Howell, supra note 80.

90 Susan Bell, Political Gynecology: Gynecological Imperialism and the Politics of Self-Help, Sci. for the People, Sept.-Oct. 1979, at 8.

91 The Boston Women's Health Collective, supra note 71.

92 Judy Klemesrud, Why Women are Losing Faith in Their Doctors, MCCALL'S, June 1973, at 76-77, 116.

93 Zimmerman, supra note 69, at 460; J. Bruce, Women-Oriented Health CARE,’ New Hampshire Feminist Health Center, Studies in Family Planning 12(10) (1981).

94 See RUZEK, supra note 69, at 25, 199. For a discussion of the abortion and the women's movement see GORDON, supra note 85; see also Kristin Luker, Abortion and the Politics of Motherhood (1984); Just Call Jane”, in from Abortion to Reproductive Freedom: Transforming a Movement (Marlene Fried ed., 1990); Lindsy Van Gelder, The Jane Collective: Seizing Control, Ms., Sept./Oct., 1991, at 83; Melinda Bart Schlesinger & Pauline B. Bart, Collective Work and Self-Identity: The Effect of Working in a Feminist Illegal Abortion Collective (1979) (Paper presented at the Meetings of the Society for the Study of Social Problems), reprinted in, Workplace Democracy and Social Change (Frank Lindenfeld & Joyce Rothschild-Whitt eds, 1982).

95 Ruzek, supra note 69; Zimmerman, supra note 69. For a review of the recent political activities of the Naral on health care reform and women's health, see Eliza Newlin Carney, The Morning After, Nat'l J., Mar. 5, 1994, at 521.

96 Vanessa, Merton, The Exclusion of Pregnant, Pregnable, and Once-Pregnable People (a.k.a. women) from Biomedical Research, 19 Am. J.L. & Med. 369 (1994)Google Scholar.

97 Hearings Before the Committee on Energy and Commerce, Subcommittee o n Health and the Environment (June 18, 1990) (Testimony of Mark Nadel, General Accounting Office); United States General Accounting Office, GAO/HRD-93-17 Women Health: FDA Needs to Ensure More Study of Gender Differences in Prescription Drug Testing (1992); National Institutes of Health, United States Department of Health and Human Services, Pub. No. 92-3457A Report of the National Institutes of Health: Opportunities for Research on Women's Health (1992); Anna C. Mastroianni Et. Al., Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies (1994); Kirschstein, Ruth L., Research on Women's Health, 81 Am. J. Pub. Health 291 (1991)Google Scholar; Merton, supra note 96; Gina Kolata, N.I.H. Neglects Women, Study Says, N.Y. TIMES, June 19, 1990, at C6.

98 The Act was introduced as multiple bills or amendments several times since 1990. The 1993 Women's Health Equity Act included 32 separate bills or amendments. See Congressional Caucus for Women's Issues, Sept. 14, 1993 (news release).

99 See Sakala, Medically Unnecessary Cesarean Births, supra note 74, at 1183-84.

100 For a skeptical view of the changes brought by consumerism and on childbirth, see Raymond G. DeVries, The Alternative Birth Center: Option or Cooptatiori?, Women & Health, Fall 1980, at 47; see also Sakala, Midwifery Care, supra note 74, at 1236.

101 The N.I.H. announced this policy in February, 1991. For an overview of women's health research, see the Journal of Women's Health Research, which was started in 1992 by the Society for the Advancement of Women's Health Research. See also Institute of Medicine, Women in Health Research: Ethical & Legal Issues of Including Women in Clinical Trials (1994).

102 DEARING, RUTHIE H. ET. AL., Marketing Women's Health Care 58 (1987)Google Scholar (“Data from national surveys conducted by market consultants and market researchers indicate that catering to t h e maternity market segment is critical to patient acquisition, not only for maternity department, but for other health services as well.“); Nancy Worcester & Marianne H. Whatley, The Response of the Health Care System to the Women's Health Movement: The Selling of Women's Health Centers, in Feminism Within the Science and Health Care Professions: Overcoming Resistance (1988); DeVries, supra note 100; Providers Target Women with Full-Service Centers, BUS. & Health, November 1986, at 55 (noting that “this market is ripe for servicing“).

103 Elston, supra note 86, at 189.

104 See Centers for Disease Control, supra note 74. These rates are particularly high. To put these trends in perspective some hospitals report cesarean section rates of less than two percent with very good outcomes and there is no evidence that these hospitals have a biased selection. For a discussion of these trends, see Sakala, Medically Unnecessary Cesarean Births, supra note 74.

105 Moving narratives are reported in the following two publications. See, e.g., C/SEC Newsletter 1-16, 1975-90, Newsletter of Cesarean/Support Education and Concern; The Clarion (1982) (Newsletter of International Cesarean Awareness Network).

106 This section often speaks about people with disabilities as a group. This kind of categorization generalizes. People with disabilities have different backgrounds and interests and great differences also exist in the kind of disabilities they may have. There are also many different groups organized around the interests of particular illnesses or disabilities. Nevertheless, important trends in recent years have been the formation of a disability rights movement and civil rights legislation to prevent discrimination against people with disabilities. I seek to learn from these common elements even though there are many differences. We should not forget that an important trend in the disabilities rights movement is that people are demanding to be treated as individuals. For an overview of the literature on disability as a category, see Michelle Fine & Adrienne Asch, Disability Beyond Stigma: Social Interaction, Discrimination and Activism,]. Soc. Issues, Volume 44, 1988, at 3. For a political perspective on American disability policy and the way society has defined disability, see Deborah A. Stone, The Disabled State (1984).

107 For a review of disability policy in the United States see Edward D. Berkowitz, Disabled Policy: America's Programs for the Handicapped (1987); Stone, supra note 106. Disability Policy: Restoring Socioeconomic Independence, 67 Milbank Quarterly Supplements 1, and 2 (1989).

108 The Americans with Disabilities Act, 42 U.S.C. § 1201 (1991). For a discussion of the statute see The Americans With Disabilities Act: From Policy to Practice (Jane West ed., 1991).

For a history of the disability rights movement see generally Gary Albrecht, The Disability Business: Rehabilitation in America (1992); Richard Scotch, From Goodwill to Civil Rights: Transforming Federal Disability Policy (1984); Joseph P. Shapiro, No Pity-People with Disabilities Forging a New Civil Rights Movement (1993); Richard B. Treanor, We Overcame: The Story of Crvil Rights for Disabled People (1993); Richard K. Scotch, Disability as the Basis for a Social Movement: Advocacy and the Politics of Definition, in Moving Disability Beyond Stigma (Adrienne Ash & Michelle Fine eds., 1987) [hereinafter Scotch, Disability as the Basis for a Social Movement].

109 Nancy Crewe & Irving K. Zola, Independent Living for Physically Disabled People (1983); Irving K. Zola, The Evolution of the Boston Self-Help Center, in A Way of Life for the Handicapped (Glenys Jones & Norman Tutt eds., 1987) [hereinafter Zola, Evolution]; Irving K. Zola, The Politicization of the Self-Help Movement, Soc Pol'y, Fall 1987, at 32-33; Irving K. Zola, Helping One Another: A Speculative History of the Self-Help Movement, 60 Archives Physical Med. & Rehabilitation 452-56 (1979).

For a discussion of self-help groups in general, see KATZ & BENDER, supra note 87.

110 Americans with Disabilities Act, 42 U.S.C. §§ 1201 (1991). For a discussion of the statute See Equal Employment Opportunity Commission & U.S. Dep't of Justice, Americans With Disabilities Act Handbook (1991).

111 Gary Woodill, Independent Lrvwc and Participation in Research (1992); Andrea G. Zetlin et al., Socialization Effects on the Community Adaptation of Adults Who Have Mental Retardation, in Living Environments and Mental Retardation 293 (Sharon Landesman & Peter Vietze eds., 1987).

112 Gerben, Dejong, Independent Living: From Social Movement to Analytic Paradigm, 60 Archives Physical Med. & Rehab. 435 (1979)Google Scholar; Scotch, Disability as the Basis for a Social Movement, supra note 108; Zola, Toward Inclusion, supra note 108.

113 Zola, Evolution, supra note 108.

114 Attendant Care Action Coalition, Direct Individualized Funding for Attendant Services: A Proposed Model (1991); Center for Research and Education, Self-Directed Attendant Services: Toward a Consumer Oriented Policy and Perspective on Personal Support Services (1990); Letter from Ross Robinson, Vic Willi, and Ian Parker, Canadian Association of Independent Living Centers, to the Hon. Francis Lankin, Ontario Minister of Health (Feb. 14, 1992) (on file with author).

115 Interview with Victor Willi, Executive Director, Center for Independent Living of Toronto (Mar. 22, 1984).

116 Zola, Irving K., Toward the Necessary Universalizing of a Disability Policy, 67 Milbank Q. 1401 (1989)Google Scholar.

117 This pride may be a characteristic stage of social movements. Similar trends have occurred in the civil rights movement for African Americans, Gays, and other groups.

118 An example of this can be seen in the movement to appoint a deaf person as president of Gauledette College, a College for deaf people. This movement from the perspective of a sympathetic person who hears is recounted in Oliver W. Sachs, Seeing Voices: A Journey into the World of the Deaf (1989).