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Toward a New Paradigm of Health Ethics, Policy and Law

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Toward a New Paradigm of Health Ethics, Policy and Law Cornell Journal of Law and Public Policy HEALTH, CAPABILITY, AND JUSTICE: TOWARD A NEW PARADIGM OF HEALTH ETHICS, POLICY AND LAW Jennifer Prah Ruger∗ INTRODUCTION .................................................................................103 I. HEALTH ETHICS, POLICY AND LAW: THE CURRENT SET OF FRAMEWORKS ..........................................................112 A. WELFARE ECONOMIC AND UTILITARIAN APPROACHES ......112 B. COMMUNITARIANISM AND LIBERAL COMMUNITARIANISM...........................................................117 C. EGALITARIAN THEORIES: EQUAL OPPORTUNITY AND EQUAL WELFARE.................................................................118 D. LIBERTARIAN AND MARKET-BASED APPROACHES .............123 E. DELIBERATIVE DEMOCRATIC PROCEDURES........................127 F. SUMMARY OF PROBLEMS WITH THE CURRENT SET OF FRAMEWORKS......................................................................130 II. AN ALTERNATIVE PARADIGM: CAPABILITY AND HEALTH ACCOUNT ................................................................136 A. AN AGENCY-ORIENTED VIEW .............................................137 B. POLICY IMPLICATIONS .........................................................138 C. INCOMPLETELY THEORIZED AGREEMENTS .........................140 III. APPLICATIONS ........................................................................142 A. EQUITABLE ACCESS TO HIGH-QUALITY HEALTH CARE .....142 1. A Capability and Health Account of Equal Access........142 ∗ Assistant Professor, Yale University, School of Medicine and Graduate School of Arts and Sciences, and School of Law (Adjunct); Ph.D. Harvard University 1998; M.Sc. Oxford University, U.K. 1992; A.B. University of California-Berkeley 1988. I thank Amartya Sen, Jerry Green, Joseph Newhouse, Cass Sunstein, Allan Brandt, Jane Mansbridge, Milton Weinstein, Ezekiel Emanuel, Rebecca Dresser, Marion Danis, Robert Brook, and Theodore Ruger, as well as participants in seminars and workshops at Harvard University and Trinity College, University of Cambridge for helpful comments on earlier versions of this work; May Chung, Leslie Saint and Betsy Rogers for helpful editing assistance and Christine Park for research assistance. This paper is drawn in part from and builds on my doctoral dissertation at Harvard University entitled, Aristotelian Justice and Health Policy: Capability and Incompletely Theorized Agreements, 1998, supervised by Amartya Sen, Joseph Newhouse and Jerry Green. For research support, I thank The Henry J. Kaiser Family Foundation, The Health Institute, The National Library of Medicine (NIH), the Mark DeWolfe Howe Fund and The Brookings Institution. 101 102 CORNELL JOURNAL OF LAW AND PUBLIC POLICY [Vol. 15:2 2. Results, Achievements and the Capability to Achieve....143 3. Rationale for High-Quality Care ...................................144 4. High-Quality Care and A Two Tiered System ...............146 5. Voluntary Risk Compared with Involuntary Risk ..........148 B. EQUITABLE AND EFFICIENT HEALTH FINANCING AND INSURANCE ..........................................................................150 1. A Capability and Health Account of Equitable and Efficient Health Financing............................................150 2. Gains in Well-Being from Risk Pooling and Health Insurance .......................................................................151 3. Empirical Evidence on the Equity of Health Financing Models ..........................................................152 4. Market Failures, Public Goods, and the Role of the Public Sector..................................................................153 C. ALLOCATING RESOURCES: A JOINT SCIENTIFIC AND DELIBERATIVE APPROACH ..................................................156 1. Reasoned Consensus Through Scientific and Deliberative Processes...................................................156 2. Frameworks for Combining Technical and Ethical Rationality for Collective Choice ................................159 3. Allocations within the Broader Social Budget...............160 4. Allocating Within the Health Policy Budget: Benefits Package: Types of Goods and Services Guaranteed...161 5. Medical Appropriateness and Clinical Practice Guidelines ......................................................................163 6. Medical Futility and Setting Limits................................168 7. Universal Benefits Package ...........................................169 8. Hard Cases: The “Bottomless Pit Objection” and “Reasonable Accommodation”....................................173 9. Joint Clinical and Economic Solutions: Incorporating Efficiency ................................................178 CONCLUSION......................................................................................186 2006] HEALTH, CAPABILITY, AND JUSTICE 103 INTRODUCTION Paradoxically, the American health-care system produces both therapeutic gains and major discrepancies in access to quality care. Medical advances have improved patients’ lives dramatically, yet stark inequalities in access, quality, financial burdens, and resource priorities undermine the impact of technological and scientific progress. The cost of health care is also on the rise.1 Although providers, lawyers, ethicists, and health-policy experts have addressed these issues many times, few proposals for reform have succeeded. The failure of the Clinton Administration’s 1993-94 health reform efforts illustrates the problem’s complexity. Currently, physicians increasingly face the ethical dilemma of restricting access to necessary medical care when health insurers, state governments, and managed care organizations make, or require them to make, rationing decisions. Moreover, the effect of a 2004 Supreme Court ruling is that patients have little recourse in suing their health maintenance organizations (HMOs) for denial of care.2 There is little consensus about how to ensure equal access, allocate scarce resources, or define a benefits package. Health ethics, policy and law offer numerous approaches to address these issues, which have generally, though not exhaustively, fallen into five categories. The first proposes welfare economic and utilitarian schemes that rely on cost-effectiveness, cost-utility, or cost-benefit analyses to aggregate costs and benefits and thus maximize social welfare.3 Libertarian theories comprise the second category. They emphasize access to rights and typically promote free-market solutions4 or quasi-market-based approaches such as ex ante choices and advance contracting for health plans with specific 1 Jon Gabel et al., Health Benefits in 2003: Premiums Reach Thirteen-Year High as Employers Adopt New Forms of Cost-Sharing, HEALTH AFF., Sept.–Oct. 2003, at 117, 117-119. 2 Aetna Health Inc. v. Davila, 542 U.S. 200 (2004) (holding that ERISA preempted plaintiffs’ causes of action against their HMOs). 3 Alan M. Garber & Charles E. Phelps, Economic Foundations of Cost- Effectiveness Analysis, 16 J. HEALTH ECON. 1, 1-13 (1997); Milton C. Weinstein & William B. Stason, Foundations of Cost Effectiveness Analysis for Health and Medical Practices, 296 NEW ENG. J. MED. 716, 716-21 (1977) [hereinafter Medical Practices]. 4 ROBERT NOZICK, ANARCHY, STATE, AND UTOPIA (1974) [hereinafter ANARCHY]; Loren E. Lomasky, Medical Progress and National Health Care, 10 PHIL. & PUB. AFF. 65, 86-88 (1981) [hereinafter Medical Progress] (arguing for a medical marketplace where consumers can purchase health care); H. TRISTRAM ENGELHARDT, THE FOUNDATION OF BIOETHICS 336-69 (2d ed. 1996); Charles Fried, Equality and Rights in Medical Care, HASTINGS CENTER REP. Feb. 1976, at 29, 29- 34 (asserting that there is no right to equal access to health care) [hereinafter Equality and Rights]. 104 CORNELL JOURNAL OF LAW AND PUBLIC POLICY [Vol. 15:2 rationing protocols.5 The third group includes theories that adhere to principles and practices that have evolved through community traditions and therefore vary in different localities.6 The fourth offers procedural or democratic approaches,7 some of which “retreat to procedural justice”8 to characterize the right procedures or use open-ended or random processes to prioritize health care.9 Finally, egalitarian theories that stress equal access to certain goods.10 These theories have begun to form a collection of approaches to health ethics, policy and law, each having advantages and limitations when applied to the problems health-care systems face. In this Article I offer an alternative theoretical framework for health ethics, policy and law, integrating both substantive criteria and procedural mechanisms – a joint scientific and deliberative approach – to guide health-system reform and allocation of scarce health resources. It appeals to a particular vision of the good life rooted in the capability approach11 and Aristotelian political 5 CLARK C. HAVIGHURST, HEALTH CARE CHOICES: PRIVATE CONTRACTS AS INSTRUMENTS OF HEALTH REFORM (1995) [hereinafter HEALTH CARE CHOICES]. See generally MARK HALL, MAKING MEDICAL SPENDING DECISIONS: THE LAW, ETHICS, AND ECONOMICS OF RATIONING MECHANISMS (1997) [hereinafter RATIONING MECHANISMS]; PAUL T. MENZEL, STRONG MEDICINE: THE ETHICAL RATIONING OF HEALTH CARE (1990) 3-21, 97-115, 116-31, 199-201 [hereinafter STRONG MEDICINE]. 6 See generally LIBERALISM AND ITS CRITICS (Michael J. Sandel ed., 1984) [hereinafter LIBERALISM]; MICHAEL J. SANDEL, LIBERALISM AND THE LIMITS OF JUSTICE (1982) [hereinafter LIMITS OF JUSTICE]; Michael Walzer, The Communitarian Critique of Liberalism, 18(1)
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