Last chance therapies and managed care: Pluralism, fair procedures, and legitimacy

Hasting Center Report

Volumn 28, Issue 2, 1998, Pages 27-42

  Daniels, Norman ^a   Sabin, James E ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ANTINEOPLASTIC AGENT;

AETNA; ANALYTICAL APPROACH; ARTICLE; AUTOTRANSPLANTATION; BLUE CROSS-BLUE SHIELD; BONE MARROW TRANSPLANTATION; BREAST TUMOR; COST BENEFIT ANALYSIS; CULTURAL ANTHROPOLOGY; DECISION MAKING; ECONOMICS; EMPIRICAL APPROACH; EXPERIMENTAL THERAPY; FEMALE; GOVERNMENT REGULATION; HEALTH CARE AND PUBLIC HEALTH; HEALTH CARE QUALITY; HEALTH INSURANCE; HEALTH SERVICE; HUMAN; HUMAN EXPERIMENT; INSURANCE; MEDICAL ETHICS; MULTIMODALITY CANCER THERAPY; NORTHERN CALIFORNIA KAISER PERMANENTE; PATERNALISM; PERSONAL AUTONOMY; RESOURCE ALLOCATION; RISK ASSESSMENT; SOCIAL BEHAVIOR; TWENTIETH CENTURY; UNITED STATES;

AETNA; ANALYTICAL APPROACH; BLUE CROSS-BLUE SHIELD; EMPIRICAL APPROACH; HEALTH CARE AND PUBLIC HEALTH; NORTHERN CALIFORNIA KAISER PERMANENTE; TWENTIETH CENTURY;

ANTINEOPLASTIC AGENTS; BONE MARROW TRANSPLANTATION; BREAST NEOPLASMS; COMBINED MODALITY THERAPY; COST-BENEFIT ANALYSIS; CULTURAL DIVERSITY; DECISION MAKING; ETHICS, MEDICAL; FEMALE; GOVERNMENT REGULATION; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; INSURANCE COVERAGE; MANAGED CARE PROGRAMS; PATERNALISM; PERSONAL AUTONOMY; QUALITY ASSURANCE, HEALTH CARE; RESOURCE ALLOCATION; RISK ASSESSMENT; SOCIAL RESPONSIBILITY; THERAPEUTIC HUMAN EXPERIMENTATION; THERAPIES, INVESTIGATIONAL; TRANSPLANTATION, AUTOLOGOUS; UNITED STATES;

EID: 0032018391     PISSN: 00930334     EISSN: None     Source Type: Journal    
DOI: 10.2307/3527569     Document Type: Article

References (34)

1. We distinguish the case of promising but unproven last chance therapies from the case of treatments that professionals decide are futile. This kind of case is marked by clear professional judgment rooted in considerable certainty about the evidence. In the last chance cases we are concerned with, it is professional uncertainty, not certainty, that is key.
2. See Norman Daniels and James Sabin, "When Is Home Care Medically Necessary?" Hastings Center Report 21, no. 4 (1991): 37-38;
3. also James 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. 5 (1994): 5-13.
4. Case studies completed to date include, James Sabin and Norman Daniels, "How MCOs Deliberated about Coverage for Lung Volume Reduction Surgery: A Focal Case Study," unpublished manuscript,
5. and Susann Wilkinson, James Sabin, and Norman Daniels, "How MCOs Decided to Cover Pallidotomy for Advanced Parkinson's Disease: A Focal Case Study," unpublished manuscript.
6. See also Norman Daniels and James Sabin, "Limits to Health Care: Fair Procedures, Democratic Deliberation, and the Legitimacy Problem for Insurers," Philosophy and Public Affairs 26, no. 4 (1997): 303-50.
7. Other technology assessment centers not affiliated with managed care organizations, such as ECRI, also undertook influential evaluations.
8. W. R. Bezwoda, L. Seymour, and R. D. 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.
9. The South African study 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 United States and elsewhere. Showing that high dose chemotherapy was superior to a conventional regimen that itself was far inferior to conventional therapy commonly in use should not persuade us of the superior efficacy of the high dose regimen.
10. The California Blue Shield evaluation took place in a public setting, the only such open technology assessment process that we know of aside from Oregon Health Resources Commission. At its discussion, the panel seemed comfortable supporting its conclusion only after it was assured that no one actually wanting the high dose chemotherapy was unable to get it, despite its investigational status.
11. See Norman Daniels, Seeking Fair Treatment: From the AIDS Epidemic to National Health Care Reform (New York: Oxford University Press, 1995), ch. 6.
12. William P. Peters and Mark C. Rogers, "Variation in Approval by Insurance Companies for Coverage of Autologous Bone Marrow Transplantion for Breast Cancer," NEJM 330 (1994): 473-77.
13. For a detailed discussion of a famous British case that arrives at views similar to ours, see Chris Ham and Susan Pickard, Tragic Choices in Health Care: The Story of Child B (London: Kings Fund, 1998, in press).
14. This program served as Aetna's modus operandi until the end of 1996, after Aetna purchased and merged with US Healthcare.
15. D. Blair Beebe, Arthur B. Rosenfeld, and Nancy Collins, "An Approach to Decisions about Coverage of Investigational Treatments," HMO Practice 11, no. 2 (1997): 65-67.
16. For fuller discussion, see Daniels and Sabin, "Limits to Health Care," pp. 308-14.
17. See also Marc Rodwin, "The Neglected Remedy: Strenghening Consumer Voice in Managed Care," The American Prospect 34 (1997): 45-50.
18. See Norman Daniels, "Rationing Fairly: Programmatic Considerations," Bioethics 7, nos. 2-3 (1993): 224-33,
19. reprinted in Norman Daniels, Justice and Justification: Reflective Equilibrium in Theory and Practice (New York: Cambridge University Press, 1997), ch. 15. Others have also argued, but for different reasons, that liberal principles of distributive justice will not address rationing problems.
20. See Daniel Callahan, Setting Limits: Medical Goals in an Aging Society (New York: Simon and Schuster, 1987);
21. Daniel Callahan, What Kind of Life: The Limits of Medical Progress (New York: Simon and Schuster, 1990);
22. Ezekiel J. Emanuel, The Ends of Human Life: Medical Ethics in a Liberal Polity (Cambridge, Mass.: Harvard University Press, 1991).
23. Callahan argues for societal specification of the goals of medicine: "Goals of Medicine: Setting New Priorities," Hastings Center Report 26, no. 6 (1996): S1-S28;
24. but see also Norman Daniels, "Justice, Fair Procedures, and the Goals of Medicine," Hastings Center Report 26, no. 6 (1996): 10-12.
25. See also Len Fleck, "Just Caring: Rational Democratic Deliberation, Health Care Rationing, and Managed Care." Paper presented at the American Association of Bioethics meeting, San Francisco, November 1996,
26. and "Just Caring: Oregon, Health Care Rationing, and Informed Democratic Deliberation," Journal of Medicine and Philosophy 19 (1994): 367-88.
27. See Daniels and Sabin, "Limits to Health Care," pp. 322-43.
28. 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: Harvard University Press, 1996).
29. For reservations about their account, see Norman Daniels, "Enabling Democratic Deliberation." Paper presented to Pacific Division of the American Philosophical Association, Berkeley, Calif., March 1997.
30. See Daniels and Sabin, "Limits to Health Care," pp. 336-40.
31. Important discussions of legitimacy and democratic deliberation can be found in Joshua Cohen, "Deliberation and Democratic Legitimacy," in The Good Polity, ed. Alan Hamlin and Phillip Petit (Oxford: Blackwells, 1989), pp. 17-34 ;
32. and more recently, "Procedure and Substance in Deliberative Democracy," in Democracy and Difference: Changing Boundaries of the Political, ed. Seyla Benhabib (Princeton: Princeton University Press, 1996), pp. 95-119;
33. Cass Sunstein, The Partial Constitution (Cambridge, Mass.: Harvard University Press, 1993).
34. See Ham and Pickard, Tragic Choices in Health Care.