QALY-fying the value of life
Questions about the ethics of QALYs
I used to have an old blog in Tumbler that I will slowly transfer here as necessary and relevant. I just heard that tomorrow, there is a vote to decide on the future of a provision as to whether QALy should be allowed for funding and coverage decisions regarding new drugs. It may be late for this, but for those interested.
Originally published April 2016
John Harris published in 1987 (Journal of Medical Ethics 13:117-123) a canonical paper on the ethics surrounding applications of QALYs. His article highlights the pitfalls and limitations of applying QALY as a metric of the value of health interventions. His perspective, 30 years later, is quite timely since so much discussion is ongoing about the value of care and the price of cancer medications. Uninvited guests to the frontline of medicine want to assert moral-economic authority regarding the appropriateness of specific medical interventions. I favor a vigorous and open debate about the best ways to develop new medications and get them to as many as possible and as cheaply as possible. The problem with QALYs is that the way it is contemporarily used is contradictory to what Harris would say is ethical – as a reason to withhold therapy. Some concerned say “the costs are too high… (sic) we as a society have to decide… (sic) we can’t afford… (sic) this is all unsustainable.” This is a very important discussion, so can we bring QALYs as a metric to the dialogue. Let’s examine.
At the outset, my opinion is that the application of QALYs to curtail reimbursement of specific medical interventions represents an unwanted intervention by patients and (I assume) most physicians. Groups such as ICER (think NICE) would like to prevail as arbiters in an otherwise primarily medical discussion. In many such discourses and publications, people talk about the accepted level of a QALY. Statements such as “it is generally accepted that …” I personally have never agreed to that. Have you? And if they say “generally accepted,” but it is not you, and it is not me, then who is it? Is it the abstract concept of a person with no name? It can’t be the patient with fears and worries sitting in my office. Have patients even heard about QALYs before? And if they have not, then who is to decide for them? Please don’t decide for me. So what are QALYs?
QALY is a term to define how much a life year is worth adjusted for quality of life. Please refer to the paper and many other publications for a nuanced description of the virtues of the various definitions. Harris's paper questions the ethical validity of QALYs; his basic premise is that applying QALYs as a factor in deciding on the appropriateness of treatments violates the principle of treating everyone equally and valuing each life equally. He points out that QALYs measure years of life (a time unit), not life itself. He provides compelling arguments that QALYs violate elements of self-determination and choice. Since I am at hopeless risk of misrepresenting his philosophical statements, I would like to highlight some of the salient concepts discussed. He is forthright in stating that the problem is complex and the absence of a clear alternative does not morally justify QALYs.
Uses of QALYs “QALYs might be used to determine which of rival therapies to give to a particular patient or which procedure to use to treat a particular condition. Clearly, the one generating the most QALYS will be the better bet for the patient and a society with scarce resources. However, QALYs might also be used to determine not what treatment to give these patients, but which group of patients to treat, or which conditions to give priority in the allocation of health care resources. It is clear that it is this latter use which Williams has in mind, for he specifically cites as one of the rewards of the development of QALYs, their use in 'priority setting in the health care system in general' (7). It is this use which is likely to be of greatest interest to all those concerned with efficiency in the health service. And it is for this reason that it is likely to be both the most influential and to have the most far reaching effects. It is this use which is I believe positively dangerous and morally indefensible.… grave dangers of its misuse. make this measure itself a life-threatening device.”
Stated differently from an ethical perspective, QALYs should only be used to select the best of two available treatment options (selection), assuming similar outcomes and the main difference being cost (a rare situation in medical fields with great innovation such as myeloma). QALYs should never be used as a reason not to provide treatment (withholding).
Acceptance of QALYs “It is crucial to realise that the whole plausibility of QALYs depends upon our accepting that they simply involve the generalisation of the 'truth' (8) that 'given the choice a person would prefer a shorter healthier life to a longer period of survival in a state of severe discomfort'.”
Do we all accept this “generalizable truth”? I don’t know – context matters.
Treat everyone equally. “The idea, which is at the root of both democratic theory and of most conceptions of justice, that each person is as morally important as any other and hence, that the life and interests of each is to be given equal weight, while apparently referred to and employed by Williams plays no part at all in the theory of QALYS. “
It is not always that life preserving is only worthy and life enhancement is not. At the heart of this paper is the concept that we should treat every person with the same concern and respect.
QALYs are discriminatory to the elderly Because of the focus on life years and not the person a logical arithmetical argument is that QALYs should be allocated to promote fertility and impeded birth control, contraception, etc. Then QALYs are, by definition, discriminatory against those that age; younger societies should get a disproportionate amount of aid. If QALYs are to be used to withhold treatments, then they can be used in selecting and treating the younger at the expense of the older.
Conclusion “QALYs encourage the idea- that the task for health economics is to find more efficient ways of doing the wrong thing - in this case sacrificing the lives of patients who could be saved.”
Self-explanatory... When a sentence promulgating decisions about medical economics includes the term QALY, be skeptical and keep some of these principles in mind.
#mmsm #myeloma #mylifeisworthit #costofdrugs #mmsm
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