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QALYs, Disability Discrimination, and the Role of Adaptation in the Capacity to Recover: The Patient-Sensitive Health-Related Quality of Life Account

Published online by Cambridge University Press:  14 February 2023

Julia Mosquera
Julia Mosquera*
Affiliation:
Institute for Futures Studies (IFFS), Stockholm, Sweden
*
Email: Julia.mosquera@iffs.se
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Extract

Quality-Adjusted Life Years (QALYs) and Disability-Adjusted Life Years (DALYs) are two of the most commonly used health measures to determine resource prioritization and the population burden of disease, respectively. There are different types of problems with the use of QALYs and DALYs for measuring health benefits. Some of these problems have to do with measurement, for example, the weights they ascribe to health states might fail to reflect with exact accuracy the actual well-being or health levels of individuals. But even if these weights represent accurately the well-being levels of individuals, there is room for questioning whether these measures capture everything that we care about in these cases, or whether there are important issues that they leave out, including considerations of fairness or equality. In this regard, the measures have been criticized for treating the aggregation of small benefits as greater than the aggregation of fewer but bigger benefits,1 for disregarding fair chances in favor of utility maximization,2 and for raising problems when applied in the context of variable population size.3 Perhaps one of the most pervasive ethical issues that has been associated with the use of these measures is the fact that they seem to discriminate against disabled people.4 Since the measures assume that disabled people have lower well-being and a shorter life span, treating a disabled person’s medical condition contributes less to the maximization of years of life with good health than treating a non-disabled patient’s medical condition.

Type
Commentary
Information
Cambridge Quarterly of Healthcare Ethics , Volume 32 , Issue 2 , April 2023 , pp. 154 - 162
Copyright
© The Author(s), 2023. Published by Cambridge University Press

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References

Notes

1. Kamm, FM. Morality, Mortality, Volume One, Death and Whom to Save From It. Oxford: Oxford University Press; 1998 CrossRefGoogle Scholar.

2. See 1, Kamm 1998.

3. See Hutchinson M. People are not replaceable: Why it’s better to extend lives than to create new ones. In: Gamlund, E, Tollef Solberg, C, eds. Saving People from the Harm of Death. Oxford: Oxford University Press; 2019: 203–214 CrossRefGoogle Scholar; and Campbell, T. Using DALYs to Evaluate Health Interventions: Lessons from Population Ethics., mimeo. Stockholm: IFFS Google Scholar.

4. See Esposito, L, Hassoun, N. Measuring health burden without discriminating against the disabled. Journal of Public Health 2016;39(3):633–639 Google Scholar; Brock D. Health care resource prioritization and discrimination against persons with disabilities. In: Francis LP, Silvers A, eds. Americans with Disabilities. London: Routledge; 2000:223–235; Brock D. Cost-effectiveness and disability discrimination. Economics and Philosophy 2009;25:27–47.

5. Nielsen, L. Disability discrimination and patient-sensitive health-related quality of life. Cambridge Quarterly of Healthcare Ethics 2022;32(2)Google Scholar.

6. For a detailed analysis of the disability discrimination problem behind the use of DALYs, see 4, Esposito, Hassoun 2016. Their alternative proposal, Ethically Adjusted Life Years (EALYs), incorporates a fixed component reflecting the status of being alive and a variable component accounting for the degree of healthiness. EALYs are meant to support three ethical principles or desirability criteria: (i) Disability Monotonicity, by which disabilities should count according to their severity; (ii) Life Egalitarianism, by which an additional life year granted should count equally, regardless of the health status of the patient, and (iii) Life Supremacy, by which a life year saved counts more than any disability year alleviated.

7. For a reply to the objection that cost-effectiveness analysis is discriminatory against the disabled, see Bognar G, Hirose I. The Ethics of Health Care Rationing. London: Routledge; 2014:79–88. Their reply consists in denying that because a person has lower QALYs, that person has a worse life, all things considered, than a person in full health. According to them, the use of QALYs does not conflate the moral distinction between the value of persons and the quality of their lives. An additional premise of their argument is that the disability discrimination objection usually conflates selecting treatments with selecting patients. Their argument emphasises that QALYs are not assigned to people, and thus QALYs should not be understood as a ranking of patients, but rather as a ranking of the outcomes resulting from the implementation of treatments or health care services. The authors recognize though that in certain circumstances, selecting treatments sometimes unavoidably leads to the selection of patients.

8. See 5, Nielsen 2023, p. 6.

9. See 5, Nielsen 2023, p. 9

10. As opposed to those for whom the treatment would be less beneficial.

11. See John, TM, Millum, J and Wasserman, D. How to allocate scarce health resources without discriminating against people with disabilities. Economics and Philosophy 2017;33(2):161–186 CrossRefGoogle Scholar.

12. See 5, Nielsen 2023, p. 10.

13. Kamm, F. Deciding whom to help, health-adjusted life years, and disabilities. In: Anand, S, Peters, F, Sen, A, eds. Public Health, Ethics and Equity. Oxford: Oxford University Press; 2004:225–242 Google Scholar.

14. Campbell, S, Nyholm, S, Walter, JK. Disability and the good life. Journal of Medicine and Philosophy 2021;46:704–728 CrossRefGoogle Scholar.

15. See Barnes, E. The Minority Body: A Theory of Disability. Oxford: Oxford University Press; 2016 CrossRefGoogle Scholar and Valuing disability, causing disability. Ethics 2014;125(1):88–113.

16. Amundson, R. Disability, ideology, and quality of life: A bias in biomedical ethics. In: Wasserman, D, Bickenbach, J, Wachbroit, R, eds. Quality of Life and Human Difference. Cambridge: Cambridge University Press; 2005;101–124 CrossRefGoogle Scholar.

17. By appeal to Kamm’s synchronic properties’, Nielsen is open to the possibility that discrimination in terms to lifespan reduction and discrimination in terms of disability may be two different types of discrimination, the former being easier to justify. I thus leave the life-length discrimination problem regarding QALYs aside and focus only on the disability and quality of life reduction.

18. Nielsen’s proposal seems to be meant to cover only those cases in which disability does not make people’s lives worse, which he takes to be the majority of cases, and where discrimination (i.e., giving them less medical priority over non-disabled people due to their disability) is unjustified. As far as I understand, his account is silent regarding those cases in which disability makes people’s lives worse from their own perspective and whether in those circumstances, giving lower medical priority to a disabled person over a non-disabled person should count as unjustified discrimination. I am thankful to an anonymous reviewer for pressing on this point.

19. See Bognar, G. Does cost effectiveness analysis unfairly discriminate against people with disabilities? Journal of Applied Philosophy 2010;27(4):394–408 CrossRefGoogle Scholar; Impartiality and disability discrimination. Kennedy Institute of Ethics Journal 2011;21(1):1–23, for a proposal with a similar motivation. On his view, disability is ignored unless it negatively affects the capacity to benefit from the treatment and the individual is responsible for it. Nielsen’s account does not however introduce elements of responsibility for distinguishing between which disabilities ought to be ignored. I take the issues I raise here as applying to this proposal, too.

20. Perhaps combined in some way with some sort of objective medical assessment of the supposed medical improvement after the treatment.

21. Eyal, N. Measuring health-state utility via cured patients. In: Cohen, IG, Shachar, C, Silvers, A, Stein, MA, eds. Disability, Health, Law, and Bioethics. Cambridge: Cambridge University Press; 2020:274–277 Google Scholar.

22. Elsewhere, I showed some of the challenges of constructing a measure of this sort and proposed some basic desirability criteria for it, as well as some ways of interpreting the data scores based on their distribution. See Mosquera, J. The bias of adapted patients in practice. Journal of Law and the Biosciences 2021;8(2) 1–10 CrossRefGoogle ScholarPubMed.

23. I am grateful to an anonymous reviewer for raising this point.

24. See 5, Nielsen 2023, pp. 6–7.