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Oregon's denial: disabilities and quality of life.

In using quality of life as a guide to rationing health services, Oregon laid itself open to charges of bias against the disabled--charges that cannot be dismissed out of hand.

Many observers were surprised, even stunned, by the Department of Health and Human Services' 3 August denial of Oregon's request for approval of its demonstration health plan for Medicaid. Admittedly the plan was gutsy and, for the United States, groundbreaking. To expand Medicaid coverage to more persons, 122 of 709 services (treatment-condition pairs) were excluded from coverage after a complex, many-layered process of surveys and public discussion about health care priorties.[1] But despite the plan's laudable extension of coverage to a wider segment of the state's low-income population, its most vigorous critics generally came from the political left; the plan, after all, made the poor the first targets of explicit rationing, and it did little to control provider fees or physician incomes. Predisposed toward state variety and experimentation rather than federal homogeneity and centralized national health programs, the Bush administration seemed poised to give it its blessing.

The unexpected rejection letter from Louis Sullivan, Secretary of Health and Human Services, focused only on conflicts with the Americans with Disabilities Act (ADA).[2] It noted particular components of the prioritization process likely to contain bias against the disabled, especially the Quality of Well-Being scale[3] derived from a telephone survey ranking six functional impairments and twenty-three symptomatic conditions, and it cited specific statements in the primary report of the Oregon Health Services Commission. (Oregon's prioritization process is outlined at p. 22.)

How cogent are these complaints? Is bias against the disabled inherent in the use of quality of life measurements to ration health services? Is the concern for people with disabilities only a smokescreen for the Bush administration's election-year reticence to admit that the problems with our health care system are so serious that explicit rationing may be the next order of the day? While I believe that the Oregon plan can be defended against the accusation that it is unfair to the poor,[4] and while the administration's complaints harbor some serious potential confusions, I will argue that the federal rejection notes a legitimate point of fundamental difficulty in any rationing scheme that gives quality of life measurement a significant role. Though the difficulty is not necessarily fatal, it should command thoughtful recognition.

The Main Complaint

Secretary Sullivan's main complaint is that the prioritized list of 709 condition-treatment pairs was "based in substantial part on the premise that the value of the life of a person with a disability is less than the value of the life of a person without a disability." He cited two segments of the prioritization process--the telephone survey and last-stage "hand adjustments" by commissioners.

The Department of Health and Human Services claims that the quality of life data derived from the survey "quantifies stereotypic assumptions about persons with disabilities" by giving heavy weight to the responses of persons who had not experienced such conditions. The analysis accompanying Sullivan's letter quotes Oregon's own acknowledgment that "those who had experienced the problem did not feel it was as severe as those who had not experienced the problem."[5] It notes that Oregon's submissions did not deny the potential for bias in constructing the Quality of Well-Being scale out of the telephone survey; the state only claimed that the telephone survey's impact on the final list was "limited." In turn Sullivan cites Oregon's own statistical analysis that the survey had allowed 120 condition-treatment pairs to move at least thirty places on the final list, and more than fifty pairs to move at least fifty places.

One of the administration's specific claims about the telephone survey is clearly misleading. For only five of the twenty-nine symptomatic conditions and impairments of function on which the survey focused did Oregon acknowledge that respondents who had experienced the condition rated it a less severe diminution of the quality of life than those who had not experienced it.[6] Moreover, only two of these conditions--cognitive difficulties and trouble with breathing--noticeably overlap with disabilities covered by the ADA. Oregon was aware of the problem of variations in ranking quality of life with different experiences, took the trouble to find out whether the responses to its survey differed significantly on the basis of respondents' experience of the condition categories, and thought it had found little that was disturbing.

Nonetheless, the problem here is difficult and fundamental. If the people whose Quality of Well-Being is ranked low do not themselves share in that judgement of their condition, then certainly something is wrong with the claim that what is being ranked is the "real quality" of people's lives; the conceptual starting point for serious, nonbiased claims about quality of life must surely be people's own perceptions thereof. Thus, for example, my perception of the quality of life in being paraplegic is only as good for the whole ranking enterprise as its accuracy in representing how I would actually feel about paraplegic life, compared to other states, where I paraplegic. Quality of Well-Being rankings are dangerous indeed if they represent some people rating other people's lives--especially lives of which they know little and whose conditions they never anticipate sharing. The Quality of Well-Being scale should reflect how people rank their own lives and the quality of the various states in which they might someday find themselves.[7] This is a problem at the core of using measurements of relative quality of life in rationing scarce services among different individuals, some of whom will suffer irreversible disadvantages from a given allocation. The solution is to insure that those who initially contribute the perferences are both reasonably knowledgeable about the conditions they are asked to rank and that they realize the utter personal seriousness of their responses--that their rankings may contribute to either others' or their own disadvantage in later allocations.

Stating the required solution this way actually deepens the difficulty even further, however. Suppose the condition being ranked is largely a congenital one--congenital, at least, in the loose sense of early onset. Oregon decisionmakers--commissioners or survey respondents who did not have this condition--would then be dealing with a condition they knew they would not one day have. That is, they would not be making their rationing choices in a fair, risk-taking state of ignorance about how the resulting allocations will turn out individually for them in particular. Many such long-standing, relatively early onset conditions, indeed, are precisely the quintessential cases of disability that the ADA is intended to protect. To be sure, it is not clear that on the actual Oregon prioritization list, any such disabilities (paired with treatments) fell below the number 587 funding cut-off line because the Quality of Well-Being in that condition measured by the survey generated too low a net benefit of therapy, but the danger of this happening in a way that disadvantages disabled people is obvious.

The extent of this difficulty is not fully appreciated by David C. Hadorn in an otherwise very useful recent discussion. Hadorn claims that to insist that the "preferences of disabled persons should govern the evaluation of health states and of outcomes used to set at odds with...the 'insurance principle'" requiring before-the-fact assessments of the value of curative or compensatory measures.[8] To be sure, we render prior consent to risk useless in setting priorities if we insist that it be forthcoming from the point in time at which the risk has already come about; one only needs to know and understand what one might be getting oneself into. But it is not sufficient to require only "full implementation of the insurance principle," including "adequate representation of all interested parties" in some collective enterprise. The problem is that persons with early onset disabilities have not been able to share in the before-the-fact, risk-taking perspective from which people can make fair quality of life assessments and implicit rationing decisions. For them, we have no fair alternative to placing the act of assessment closer to their current condition. That can be done by asking disabled persons themselves, or if that too completely eliminates the risk element required by the insurance principle, by at least asking persons who are directly familiar with disability conditions.

This difficulty in the use of quality of life rankings for congenital and nearly lifelong disabilities must be kept in perspective. We cannot dismiss entirely the use of these rankings even for persons with long-standing disability conditions that rank low. The most accurate Quality of Well-Being measurements in the world are likely to disadvantage disabled persons when the question is one of services that might save or extend their lives, but they can still gain something else from the whole business of such ranking. With quality of life adjustments, nonlifesaving services that improve their condition are more likely to come out ahead in any rationing competition precisely because the initial quality of life from which the disabled patient moved is rated low, which increases the net gain attributed to a service that pushes them to a given level higher up.[9] It is not clear what disabled people themselves would say about this tradeoff. Will they endorse a bargain in which they gain some prospective advantage in competing for quality-enhancing measures for their lives but lose credits in the competition for scare lifesaving resources? That is an open question, whose answer is neither obviously affirmative--endorsing Oregon's use of an at least accurately constructed Quality of Well-Being scale--nor obviously negative, pitting the ADA against virtually any plan infused by considerations of quality of life.

Hand Adjustments

The commissioners' last-stage "hand adjustments" of the priorities it generated with the help of Quality of Well-Being ratings greatly exacerbated the problem the federal government perceived. According to the Oregon report, commissioners used a "reasonableness" test involving "public health impact, cost of medical treatment, incidence of condition, effectiveness of treatment, social costs, and cost of non-treatment." Commissioners also "observed that it was not reasonable--logically or economically--to to rank preventable or readily treatable conditions in relatively unfavorable positions. In other words, where severe or exacerbated conditions were ranked in a relatively favorable position compared to prevention of disease, disability or exacerbation, these occurrences were reversed."[10] The Department of Health and Human Services analysis jumps on this, taking particular offense at the apparent downgrading of "severe or exacerbated conditions," a wording that it noted was almost "the very definition of a disability."

It could be, of course, that the "severe and exacerbated conditions" that got downgraded on the list were linked with the treatments that could benefit persons with those conditions only very marginally, if at all. Then it would be the relative futility of therapy for a severe and exacerbated condition, not the severity and exacerbation itself, that would explain a low position on the list. But Oregon left itself open to other suspicions. Take "low incidence," for example: suppose it led to a particular last-stage reordering. Why, separate from cost-per-benefit differences, should we care a whit about whether a condition is rare or common when we prioritize services? If a condition is rare but costs no more per case to treat and generates equal per-case benefits, it is surely forgetful of individual recipients to downgrade services for relatively low-incidence conditions.

The point can be illustrated with a simple hypothetical example. Why should we perfer treatment 1 for condition A, costing $10 for each of 100 people, over treatments 2 through 11 for conditions B through K, each of which also costs $10, but where each of the conditions affects only 10 people? In either case we are gaining the same benefit for 100 people for $1000. To prefer the common disease is surely an irrational bias against people and problems that come in small groups. We don't have an "ism" with which to label such a preference, but it surely is unjustifiable in the absence of other factors (like greater danger of contagion for the more common disease).

This is one example of what may be a general bias in the Oregon model against individuals and their plights and toward community perceptions of their situations. Oregon ought to be lauded for bringing rationing out of the closet in the consciousness of its citizens. We all ought to be thinking about the priorities by which we would really like to be governed, as long as we share the risks and do not lord our preferences over people who know much more about their situation than we do. But we can easily get so caught up in the "community" nature of the discussion and the framework in which it is conducted that we unfairly ignore certain individuals. There may indeed need to be an opportunity for some kind of last-stage adjustments of the outcome of any initial, more highly structured prioritization process, but that should not be a vehicle for the biases and powers of popular majorities.

Other Federal Criticisms

Only two particular condition-treatment pairs on the final Oregon list were specifically mentioned in the federal analysis. Understandably, given their sole mention, they have been featured prominently in news coverage of the denial. Liver transplants for alcoholic cirrhosis patients were excluded as item 690, while similar transplants for "cirrhosis of liver or biliary tract without mention of alcohol" were funded as item 367. Life support for low-birthweight babies under 500 grams and under 23 weeks' gestation was the second-lowest item (708), while medical therapy (presumably including life support) for low-birthweight infants of at least 500 grams was highly ranked (item 22).

The Department of Health and Human Services observes that the differential listing of the two types of potential liver transplant patients seems to be "made entirely on the basis of a disabling condition (alcoholism)" since "similarly situated" individuals without that condition would receive treatment. The analysis acknowledges that entirely consistently with the ADA, Oregon could exclude transplant coverage in cases where the patient is not only alcoholic but shows little evidence of alcohol use rehabilitation. Presumably any transplant's chances of success are markedly lower if the alcoholic patient is not effectively rehabilitated. This is not a difficult problem for the Oregon plan; it can meet ADA standards by simply referring to unrehabilitated alcoholism in its excluded condition-transplant pair. It would of course have to cover transplants for alcoholic patients likely to stay rehabilitated unless as a category they too have sufficiently lower chances of success.[11]

It is crucial that this interpretation of the liver transplant case govern the interpretation of an earlier, more general passage in the department's analysis. After its pointed criticism of the "reasonableness" test for last-stage adjustments, the department acknowledges the many factors such as the cost of medical procedures and the length of hospital stays that Oregon may consider in allocating medical resources consistent with the ADA. Then it states the general standard: "Oregon may consider...any content neutral factor that does not take disability into account or that does not have a particular exclusionary effect on persons with disabilities."[12]

This sounds right, but what counts as having "a particular exclusionary effect on persons with disabilities"? Take condition-treatment pair 686, medical therapy for progressive dementia and organic brain syndrome (Alzheimer's is one form). Suppose even the most knowledgeable and sympathetic people looking forward to the possibility of such dementia deem the quality of life in that condition so low that what would otherwise be sufficiently high-benefit care can here be classified as not worth funding. Infusing quality of life concerns into the process does indeed have a "particular exclusionary effect on persons with that disability." Just previously the department's analysis makes another statement of what the ADA prohibits: "any methodology that would intentionally ration health care resources by associating quality of life considerations with disabilities." The use of the Quality of Well-Being scale would seem to end up rationing out life-supporting medical therapy for patients with severe organic brain syndrome, and a focus on the behavioral conditions necessary for a good chance of medical success will probably end up rationing out liver transplants for unrehabilitated alcoholics. Quality of life considerations as well as likelihood of medical success sometimes do get associated with disabilities (though not only with disabilities). Such considerations must not be seen as biased against persons with disabilities just because they catch disabilities in their net. They ought to be regarded as inconsistent with the ADA only if we would reject them as legitimate considerations at all were they not sometimes to deny care to persons with disabilities. This is a tough distinction for many to accept, for it means that even with the ADA, particular disabled individuals will end up disadvantaged. It is, however, a distinction utterly essential to maintain if we are going to have any significant rationing at all.[13]

The objection to excluding life-support for under-500-gram babies may also not turn out to be a fundamental sticking point as the Oregon plan is revised. It has long been acknowledged that physicians and families can let very low-chance infants die without running afoul of the Child Abuse Amendments of 1984 if they stay in the plausible enough range of nontreatment to avoid their own state child abuse agency's investigation. To be sure, the administration's Oregon waiver rejection is suspicious in that it is linked to a hardline "save any baby at all costs" point of view during an election year in which every right-to-life watchdog is waiting to pounce on the least sign of administration backsliding. Oregon, however, can undoubtedly just give in to Secretary Sullivan on this one and use the language of the 1984 Child Abuse Amendments to state its inclusions and exclusions; doing so will not end up in any practical requirement that physicians and families go all out to save babies weighing less than 500 grams.

A Necessary Risk

Rationing that considers quality of life must be allowed to go forward even if at times it happens to disadvantage some persons with disabilities. Indeed, it is questionable whether we could ever devise a system of priority-setting that was not informed in some measure by assessments of quality of life. Disadvantage, however, is not the same thing as the invidious discrimination the ADA seeks to preclude. We can live with some outcomes disadvantageous to some persons with disabilities--so long as quality of life measures adequately take into account the judgements of those who experience disabling conditions at first hand, and so long as any such disadvantages are significantly driven by medical outcomes data and not disability per se. Nevertheless, the flags that the Department of Health and Human Services saw in the Oregon plan for reforming Medicaid and eventually more of its health care system were real danger flags. Properly qualified and interpreted, the questions about consistency with the ADA that the department has asked raise important fundamental issues about the fairness of different methods of measuring quality of life for use in allocating health services. It is disturbing to see across-the-board opponents of any and all rationing apparently get some of the administration's ear, and it must have been terribly maddening for Oregon officials not to have been consulted earlier about the department's potential objections, but the administration has reinserted an appropriate consideration of the disadvantaged individual back into what might have become Oregon's too narrow reflection of dominantly "communal" values.


1. For two relatively comprehensive descriptions and discussions of the Oregon plan, see Michael Garland, "Justice, Politics, and Community: Expanding Access and Rationing Health Services in Oregon," Law, Medicine, and Health Care 20, nos. 1-2 (1992):67-81; and Charles J. Dougherty, "Setting Health Care Priorities: Oregon's Next Steps," special supplement, Hastings Center Report 21, no. 3 (1991):1-0. The plan itself is reported by the Oregon Health Services Commission, Prioritization of Health Services: A Report to the Governor and the Legislature (Salem, Oregon, 1991), hereafter OHSC Report.

2. Letter of 3 August 1992 from Louis W. Sullivan, Secretary of Health and Human Services, to Oregon Governor Barbara Roberts, with accompanying three-page "Analysis Under the Americans with Disabilities Act ('ADA') of the Oregon Reform Demonstration."

3. Detailed in the OHSC Report, ch. 2 and appendices C and G. See also David Hadorn, "The Oregon Priority-Setting Exercise: Quality of Life and Public Policy," special supplement, Hastings Center Report 21, no. 3 (1991):S11-S16. For the basic framework within which the Oregon plan was working, see Robert M. Kaplan and J. P. Anderson, "A General Health Policy Model: Update and Applications," Health Services Research 23 (1988):203-35; and Kaplan and Anderson, "The General Health Policy Model: An Integrated Approach," in Quality of Life Assessments in Clinical Trials, ed. B. Spilker (New York: Raven Press, 1990), pp. 131-49.

4. Paul Menzel, "Some Ethical Costs of Rationing," Law, Medicine, and Health Care 20, nos. 1-2 (1992): 57-66, at 62-64. For another defense of the plan against this criticism, see Leonard M. Fleck, "The Oregon Medicaid Experiment: Is It Just Enough?" Business and Professional Ethics Journal 9, nos. 3-4 (1990):201-17. A more nuanced and cautious discussion is Norman Daniels, "Is the Oregon Rationing Plan Fair?" JAMA 265, no. 17 (1 May 1991):2232-35.

5. OHSC Report, C-11.

6. Numbers 4, "trouble learning, remembering or thinking clearly"; 10, "coughed, wheezed or had trouble breathing"; 18, "prescribed medication or diet for health reasons"; 19, "wear glasses or contact lens"; and 21, "trouble with sexual performance." OHSC Report, C-11.

7. This point is developed at greater length in Menzel, "Some Ethical Costs," pp. 59-62, and in Menzel, Strong Medicine: The Ethical Rationing of Health Care (New York: Oxford University Press, 1990), pp. 84-91. For a vigorous argument that measurements of quality of life cannot meet this test of representing accurately the real value of life to the people whose lives get ranked relatively low, see John Harris, "QALYfying the Value of Life," Journal of Medical Ethics 13, no. 3 (1987):117-23.

8. David C. Hadorn, "The Problem of Discrimination in Health Care Priority Setting," JAMA 268, no. 11 (16 September 1992):1454-59, at 1455-56.

9. A point noted at greater length and with illustration in Menzel, Strong Medicine, pp. 80-81; also see Hadorn's "Point 5" in "The Problem of Discrimination," p. 1456.

10. OHSC Report, p. 28. The entire passage quoted here is also quoted in the DHHS analysis.

11. What is not allowed by the ADA, apparently, is any differential of the sort argued for by Moss and Siegler: both for reasons of fairness and the need for public support for organ donation and transplantation, nonalcoholic patients who cannot even remotely be alleged to have brought their end-stage liver disease on themselves ought to stand ahead of alcoholic patients for the very scarce number of available livers. See Alvin H. Moss and Mark Siegler, "Should Alcoholics Compete Equally for Liver Transplantation?" JAMA 265, no. 10 (13 March 1991):1295-98.

12. Emphasis added. At this point Alexander v. Choate, 469 U.S. 287 (1985) at 302, is cited; there the court allowed a reduction in the number of hospital days covered by a state program from 24 to 20.

13. Perhaps some of the organized disability groups whose representatives met with Secretary Sullivan not long before his announcement of the Oregon denial wanted to disable any deliberate rationing of health care. U.S. News and World Report, in fact, claimed precisely that ("To Ration or Not to Ration?" 10 August 1992, p. 26).
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Title Annotation:includes related article; rationing health services
Author:Menzel, Paul T.
Publication:The Hastings Center Report
Date:Nov 1, 1992
Previous Article:Oregon's disability: principles or politics?
Next Article:Letting her go.

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