Limits to health care: Fair procedures, democratic deliberation, and the legitimacy problem for insurers

Philosophy and Public Affairs

Volumn 26, Issue 4, 1997, Pages 303-350

  Daniels, Norman ^a   Sabin, James ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

HORMONE;

ANALYTICAL APPROACH; ARTICLE; BIOMEDICAL TECHNOLOGY ASSESSMENT; BONE MARROW; BREAST TUMOR; CIVIL RIGHTS; CONSUMER; COST BENEFIT ANALYSIS; DECISION MAKING; ECONOMICS; ETHICS; EXPERIMENTAL THERAPY; GROWTH DISORDER; HEALTH CARE AND PUBLIC HEALTH; HEALTH CARE DELIVERY; HEALTH CARE ORGANIZATION; HEALTH INSURANCE; HUMAN; HUMAN EXPERIMENT; INDUSTRY; INSTITUTIONAL ETHICS; INTERPERSONAL COMMUNICATION; JURISPRUDENCE; MEDICAL TECHNOLOGY; ORGANIZATION AND MANAGEMENT; PATIENT SELECTION; POLICY; POLITICAL SYSTEM; PRACTICE GUIDELINE; PUBLIC HEALTH; REIMBURSEMENT; RESEARCH; RESOURCE ALLOCATION; RISK; RISK ASSESSMENT; SOCIAL BEHAVIOR; SOCIAL CONTROL; SOCIAL JUSTICE; SOCIAL WELFARE; TISSUE TRANSPLANTATION; UNITED STATES;

ANALYTICAL APPROACH; HEALTH CARE AND PUBLIC HEALTH;

BIOMEDICAL TECHNOLOGY; BONE MARROW; BREAST NEOPLASMS; CIVIL RIGHTS; CONSUMER PARTICIPATION; COST-BENEFIT ANALYSIS; DECISION MAKING; DELIVERY OF HEALTH CARE; DEMOCRACY; DISCLOSURE; ECONOMICS; ETHICS; ETHICS, INSTITUTIONAL; GROWTH DISORDERS; GUIDELINES; HEALTH CARE RATIONING; HORMONES; HUMANS; INDUSTRY; INSURANCE, HEALTH; INSURANCE, HEALTH, REIMBURSEMENT; JURISPRUDENCE; MANAGED CARE PROGRAMS; NATIONAL HEALTH PROGRAMS; NEGOTIATING; PATIENT SELECTION; PRIVATE SECTOR; PUBLIC POLICY; PUBLIC SECTOR; RESEARCH; RESOURCE ALLOCATION; RISK; RISK ASSESSMENT; SOCIAL CONTROL, FORMAL; SOCIAL JUSTICE; SOCIAL RESPONSIBILITY; SOCIAL WELFARE; TECHNOLOGY ASSESSMENT, BIOMEDICAL; THERAPEUTIC HUMAN EXPERIMENTATION; THERAPIES, INVESTIGATIONAL; TISSUE TRANSPLANTATION; UNITED STATES;

EID: 0031217084     PISSN: 00483915     EISSN: 10884963     Source Type: Journal    
DOI: 10.1111/j.1088-4963.1997.tb00082.x     Document Type: Article

References (49)

1. Medical insurance traditionally excludes beneficial nonmedical services (e.g., dental, home supports); it also arbitrarily limits beneficial mental health services (e.g., 10 not 20 therapy sessions, or 30 not 35 hospital days). The use of guidelines, utilization review, and systematic technology assessment arguably limits some beneficial services at the margin, including cases when a patient or clinician has good reason to object to the limits.
2. Decisions about new technologies are only the tip of the limit-setting iceberg. Much of what is said about these decisions can be generalized to other, explicit limit-setting decisions, including practice guidelines approved by MCOs. Despite their importance, we will not discuss the discretionary, limit-setting decisions of practitioners who limit care because they are responding to economic incentives to reduce treatment.
3. Since even "unmanaged" indemnity insurers manage coverage for new technologies, lumping them together is less problematic than it might otherwise be.
4. The term "medical necessity" is partly intended to confer legitimacy on some decisions about limiting our obligations to provide medical assistance. See Norman Daniels and James E. Sabin, "When Is Home Care Medically Necessary?" Hastings Center Report 21, no. 4 (July-August 1991): 37-38,
5. and James E. Sabin and Norman Daniels, "Determining 'Medical Necessity' in Mental Health Practice: A Study of Clinical Reasoning and a Proposal for Insurance Policy," Hastings Center Report 24, no. 6 (November-December 1994): 5-13.
6. For discussion of a ten-dimensional matrix for assessing the fairness of reforms, or of a system, see Norman Daniels, Donald Light, and Ronald Caplan, Benchmarks of Fairness for Health Care Reform (New York: Oxford University Press, 1996).
7. Kenneth Arrow, "Uncertainty and the Welfare Economics of Medical Care," American Economic Review 53 (1963): 941-73.
8. Despite the failure of the Clinton effort at universal coverage and the recent elimination of entitlement status to Medicaid, survey evidence still points to widespread support for universal coverage in the U.S., and we should be wary of drawing inferences about the decline of support from the complex political events involved in welfare reform and the failure of health care reform. See Daniels, Light, and Caplan, Benchmarks of Fairness for Health Care Reform, Chapter 2.
9. A possible exception might be people with physical disabilities, though we generally see our obligation to them as requiring that existing transportation for others be accessible to them.
10. Formal equality of opportunity (careers open to talents) prohibits legal or quasi-legal barriers to access to jobs and offices. Equality of fair opportunity corrects for socially induced disadvantages in the development of talents and skills that result from social practices such as racism, sexism, or significant inequalities in family background. See John Rawls, A Theory of Justice (Cambridge, Mass.: Harvard University Press, 1971), pp. 65ff.
11. By subsuming health care under the fair equality of opportunity principle, Daniels extends Rawls' principle and theory. See Norman Daniels, Just Health Care (New York: Cambridge University Press, 1985), Chapter 3.
12. Daniels argues that the fact that we have social obligations to provide universal coverage for medical needs does not imply that individual physicians have some specific set of obligations to treat all needy patients (Daniels, Just Health Care, pp. 115-19).
13. Similarly, insurers who legally exclude high-risk patients from coverage are not to be blamed for violating an obligation of justice, even if the exclusion of these patients is unjust (see Norman Daniels, Seeking Fair Treatment: From the AIDS Epidemic to National Health Care Reform (New York: Oxford University Press, 1995), Chapter 4). The obligation here is society's, not the corporations'. But the social obligation means that collective action must be taken to specify the obligations of individual practitioners and corporations, modifying "business as usual" if that is needed to produce just outcomes.
14. Guido Calabrese and Philip Bobbit, Tragic Choices (New York: Norton, 1978);
15. see also Jon Elster, Local Justice: How Institutions Allocate Scarce Goods and Necessary Burdens (New York: Russell Sage, 1992).
16. The MAP criteria are as follows: a. The technology must have final approval from the appropriate government regulatory body. b. The scientific evidence must permit conclusions concerning the effect of the technology on health outcomes. c. The technology must improve the net health outcome. d. The technology must be as beneficial as any established alternative. e. The improvement must be attainable outside the investigational settings. MAP does not make coverage decisions, however; MCOs do. A South African study (WR. Bezwoda, L. Seymour, RD. Dansey, "High-dose Chemotherapy with Hematopoietic Rescue as Primary Treatment for Metastatic Breast Cancer: A Randomized Trial," Journal of Clinical Oncology 13 [1995]: 2483-89), the only published randomized clinical trial available as of mid-1966, used as its control a regimen of standard chemotherapy that was inferior in outcomes to the conventional therapy that would standardly be available in the U.S. and elsewhere. Consequently, it should not persuade us of the superior efficacy of the high-dose regimen. Using the same criteria, Blue Shield of Northern California judged the therapy "investigational" even after the national MAP voted the opposite.
17. See Norman Daniels, Seeking Fair Treatment. Chapter 5.
18. See Marthe Gold, Joanna Siegel, Louise Russell, and Milton Weinstein, Cost-Effectiveness in Health and Medicine (New York: Oxford University Press, 1966), Chapter 1.
19. Also see Norman Daniels, "Rationing Fairly: Programmatic Considerations," Bioethics 7 (1993): 223-33,
20. reprinted in Norman Daniels, Justice and Justification: Reflective Equilibrium in Theory and Practice (Cambridge: Cambridge University Press, 1996), pp. 317-27.
21. See Daniels, "Rationing Fairly," pp. 223-33.
22. The claim is based on observations over several years of how audiences of students and medical personal vote on hypothetical cases of this sort. Eric Nord has reported variations in attitudes toward priorities of this sort between different groups of students and professionals. See Eric Nord, "The Relevance of Health State After Treatment in Prioritising between Different Patients," Journal of Medical Ethics 19 (1993): 37-42.
23. There is some cross-national evidence that people are not straight maximizers in Eric Nord, Jeff Richardson, Andrew Street, Helga Kuhse, and Peter Singer, "Maximizing Health Benefits vs Egalitarianism: An Australian Survey of Health Issues," Social Science and Medicine 41, no. 10 (1995): 1429-37.
24. A distinct minority of students and health professionals would argue as follows: if helping the less-sick patient actually returns her to a level of functioning that permits her to work and carry out other social activities, whereas helping the sicker patient does not accomplish this outcome, then it is more important to help the healthier patient. Some holding this view reason that the healthier patient will then return more to society, but others justify their view by saying the healthier patient is likely to be happier than the sicker one, focusing only on the relative well-being of the patients, not on their social contribution.
25. Frances Kamm suggests this may be true. Her brilliant discussion of cases often points to less disagreement than we find in thinking about them with students or public audiences. See Frances Kamm, Morality and Mortality, Volume 1: Death and Whom to Save From It (New York: Oxford University Press, 1993).
26. For some concerns about her methods, see Norman Daniels, "Kamm's Moral Methods" forthcoming in Philosophy and Phenomenological Research.
27. See Daniels, "Rationing Fairly," pp. 226-27;
28. Kamm, Morality and Mortality, Chapter 12;
29. and T. M. Scanlon, "Contractualism and Utilitarianism," in Amartya Sen and Bernard Williams, Utilitarianism and Beyond (Cambridge: Cambridge University Press, 1982), pp. 103-28 .
30. Personal communication and presentation at the Stockholm Conference on Priorities in Health Care, October 17, 1996.
31. These conditions were developed independently but fit reasonably well with the principles of publicity, reciprocity, and accountability governing democratic deliberation cited by Amy Gutmann and Dennis Thompson, Democracy and Disagreement (Cambridge, Mass.: Harvard University Press, 1996).
32. For reservations about their account, see Norman Daniels, "Enabling Democratic Deliberation," Pacific Division of the American Philosophical Association, March 28, 1997.
33. See Hastings Center, "Goals of Medicine: Setting New Priorities," in Hastings Center Report 26:6 (November-December, 1966): S1-S28, Special Supplement;
34. see also Norman Daniels, "Justice, Fair Procedures, and the Goals of Medicine," Hastings Center Report 26:6 (November-December 1966): 10-12.
35. See Joshua Cohen and Charles Sobel, "Directly Deliberative Polyarchy," European Law Journal (forthcoming), for a discussion of the value of democratic deliberation in decentralized institutions that converges with points we make here.
36. Frederick Schauer notes that "decisionmakers themselves are unlikely to fully apprehend and appreciate this function [that reason-giving increases discipline], for most decisionmakers underestimate the need for external quality control of their own decisions. But when institutional designers have grounds for believing that decisions will systematically be the product of bias, self-interest, insufficient reflection, or simply excess haste, requiring decisionmakers to give reasons may counteract some of these tendencies." Frederick Shauer, "Giving Reasons," Stanford Law Review 47, no. 4 (1995): 633-59, at 657.
37. Schauer, "Giving Reasons," p. 658.
38. See Daniels, Justice and Justification, Chapters 10 and 11;
39. also Norman Daniels, "Growth Hormone Therapy for Short Stature: Can We Support the Treatment/Enhancement Distinction?" Growth: Genetics and Hormones 8, suppl. 1 (1992): 46-48.
40. See Norman Daniels, "Justice and the Dissemination of Big Ticket Technologies," in Deborah Mathieu, Organ Substitution Technology: Ethical, Legal, and Public Policy Issues (Boulder: Westview, 1988), pp.211-20.
41. See Joshua Cohen, "Deliberative Democracy" (unpublished 1996 ms);
42. Joshua Cohen, "Procedure and Substance in Deliberative Democracy," in Seyla Benhabib, ed., Democracy and Difference: Changing Boundaries of the Political (Princeton University Press, 1996), pp. 95-119;
43. Joshua Cohen, "Pluralism and Proceduralism," Chicago-Kent Law Review 69, no. 3 (1994): 589-618;
44. John Rawls, Political Liberalism (New York: Columbia University Press, 1993);
45. Cass Sunstein, The Partial Constitution (Cambridge, Mass.: Harvard University Press, 1993).
46. We here follow Joshua Cohen, "Deliberative Democracy," p. 14.
47. Cohen notes that an aggregative view might arguably be extended to give some protection from outcomes that involved discrimination against those who are targets of stereotyping or hostility, e.g., against people with disabilities or racial minorities. A process that allowed simple aggregation of those preferences arguably does not give people equal consideration and so violates its own rationale. Cohen, "Deliberative Democracy," p. 15.
48. If organizations that put reasons forward (call them ice breakers) actually benefited, then the coordination problem we describe comes from a misestimate of what self-interested action calls for. It is the misestimate that sets up the public-goods problem (the many-person prisoners dilemma) informally described in the text. If organizations that act as ice breakers when others fail to do so actually do worse, then we have a true many-persons prisoners dilemma.
49. Detailed presentations of these cases took place at the Stockholm Conference on Priorities in Health Care, October 1996.