Whose values should count – those of patients or the general public – when adopting the quality-adjusted life year framework for healthcare decision making is a long-standing debate. Specific disciplines, such as economics, are not wedded to a particular side of the debate, and arguments for and against the use of patient values have been discussed at length in the literature. In 2012, Sinclair proposed an approach, grounded within patient preference theory, which sought to avoid a perceived (...) unfair discrimination against people with disabilities when using values from the general public. Key assumptions about general public values that beget this line of thinking were that ‘disabled states always tally with lower quality of life’, and the use of standardised instruments means that ‘you are forced into a fixed view of disability as a lower value state’. Drawing on recent contributions to the health economics literature, we contend that such assumptions are not inherent to the incorporation of general public values for the estimation of QALYs. In practice, whether health states of people with disabilities are of ‘lower value’ is, to some extent, a reflection of the health state descriptions that members of the public are asked to value. (shrink)

It is widely accepted that one of the main objectives of government expenditure on health care is to generate health. Since health is a function of both length of life and quality of life, the quality-adjusted life-year (QALY) has been developed in an attempt to combine the value of these attributes into a single index number. The QALY approach - and particularly the decision rule that healthcare resources should be allocated so as to maximise (...) the number of QALYs generated - has often been equated with the utilitarian philosophy of maximising `the greatest happiness of the greatest number'. This paper considers the extent to which the measurement and aggregation of QALYs really is utilitarian by developing a new taxonomy in order to classify utilitarianism and the different aspects of the QALY approach. It is shown that the measurement of QALYs is consistent with a number of different moral positions and that QALYs do not have to be aggregated according to the maximisation rule. Therefore it is inappropriate to necessarily equate QALYs with utilitarianism. It is shown that much turns on what in principle the QALY represents and how in practice it can be operationalised. The paper highlights the category confusion that is often present here and suggests possible avenues for future theoretical and empirical research. (shrink)

Health policymakers employ utility measures to inform resource allocation decisions. They often rely on a conceptual tool called the quality-adjusted life year that discounts the value of years lived in a state of disability relative to years lived in full health. A representative sample of the general public is asked to place values on hypothetical health states as part of a standard gamble or time trade-off task. Policymakers use the resulting values to calculate the number (...) of QALYs gained through particular interventions. Utilitarian reasoning mandates that policymakers maximize QALYs gained per unit cost.Although many scholars have explored the problems of distributive justice that arise from this system... (shrink)

A lot of medical procedures can be justified in terms of the number of quality-adjusted life-years (QALYs) they can be expected to generate; that is, the number of extra years that the procedure will provide, with the quality of life during those extra years factored in. QALYs are a crude tool, but good enough for many decisions. Notoriously, however, they cannot justify spending any money on terminal care (and indeed on older people (...) in general). In this paper I suggest a different way of construing ‘quality’ (as meaningfulness rather than physical comfort) and ‘life’ (as both backward-looking and forward-looking), so that the terminal patient's efforts to find meaning in his life could in principle generate plenty of ‘retrospective QALYs’ to justify funding. (shrink)

A new word has recently entered the British medical vocabulary. What it stands for is neither a disease nor a cure. At least, it is not a cure for a disease in the medical sense. But it could, perhaps, be thought of as an intended cure for a medicosociological disease: namely that of haphazard or otherwise ethically inappropriate allocation of scarce medical resources. What I have in mind is the term ‘QALY’, which is an acronym standing for quality (...) class='Hi'>adjusted life year. Just what this means and what it is intended to do I shall explain in due course. Let me first, however, set the scene. (shrink)

One of the fundamental aims of nursing is to safeguard or promote patients' "quality of life." Perspectives on Quality of Life examines existing ways of defining the concept and argues that nurses need to adopt a fresh approach, which more accurately reflects patients' concerns and helps them to develop practical ways of promoting the well-being of people in their care. Part One provides an analysis of statistical approaches to quality of life, including social indicators, (...) the Quality Adjusted Life Year (QALY), and the medical outcomes literature. Part Two proposes an alternative, qualitative approach to organizing care, which respects the patients' choice and individuality. Part three presents the findings of new research into the quality of life of older people in hospital wards. (shrink)

This article proposes a novel strategy, one that draws on insights from antidiscrimination law, for addressing a persistent challenge in medical ethics and the philosophy of disability: whether health systems can consider quality of life without unjustly discriminating against individuals with disabilities. It argues that rather than uniformly considering or ignoring quality of life, health systems should take a more nuanced approach. Under the article's proposal, health systems should treat cases where quality of life (...) suffers because of disability-focused exclusion or injustice differently from cases where lower quality of life results from laws of nature, resource scarcity, or appropriate tradeoffs. Decisionmakers should ignore quality-of-life losses that result from injustice or exclusion when ignoring them would improve the prospects of individuals with disabilities; in contrast, they should consider quality-of-life losses that are unavoidable or stem from resource scarcity or permissible tradeoffs. On this proposal, while health systems should not amplify existing injustice against individuals with disabilities, they are not required to altogether ignore the potential effects of disability on quality of life. (shrink)

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,1for disregarding fair chances in favor of utility maximization,2and for raising problems when applied in the context of variable population size.3Perhaps 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.4Since 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. (shrink)

Medical, scientific and societal progress has been such that, in a universalist humanist perspective such as the WHO’s, it has become an ethical imperative for the primary endpoints in evidence based health care research to be expressed in e.g. Quality Adjusted Life Years (QALYs). The classical endpoints of discrete health‐related functions and duration of survival are increasingly perceived as unacceptably reductionistic. The major problem in ‘felicitometrics’ is the measurement of the ‘quality’ term in QALYs. That (...) the mental, physical and social domains, each containing many dimensions and items, all contribute to QOL is uncontroversial. What is controversial, is the weight of the different dimensions in overall QOL. It has been shown to be very different between different patient populations. In human individuals, assuredly complex systems, the many dimensions and items of QOL observably interact, probably sometimes also in chaotic ways. In these conditions, the weights of isolated items in individuals become for all practical purposes meaningless. Therefore, the much used multi‐item questionnaires at best describe, but do not evaluate QOL, neither in individuals, nor in populations. For example, allergic patients treated with cetirizine scored better than those a placebo on all dimensions of the SF‐36, a standard QOL questionnaire. Here there is no serious doubt that the treatment improved QOL, because it is highly unlikely that any important dimension on which the patient groups would have scored otherwise is missing in the SF‐36. However, whether piracetam treatment of acute stroke, which improved the surrogate endpoints neurological and functional scores, also improved QOL is plausible, but will be proven only when comprehensive QOL measurement will have been done. And suppose in randomised populations of end‐stage metastatic solid cancer patients, one would compare palliative last‐line chemotherapy with only palliative care, and one would, as can be expected, find no significant differences in average survival, and chemotherapy superior for the mental domain, but inferior for the physical comfort domain: we would not know which treatment, on aggregate, would be the better. The problem is that QOL is an individual and emergent construct, the resultant of a great many intractions, and of a different order than its contributing components. Overall QOL can therefore best be captured only as the Gestalt of a global self‐assessment. Just as people in everyday life, while acting under uncertainty, make global assessments all the time, so they can seriously answer the serious question: ‘How have you been?’ A solemn, practical, non peer‐relativistic, non‐cultural, experiential, and well tolerated way to obtain such responses is Anamnestic Comparative Self Assessment (ACSA), in which the subjects' memories of the best and the worst times in their life experience define their individual scale of QOL. ACSA is thus both exquisitely idiosyncratic, and yet can in a universalist humanistic perspective be considered generic. Using both a multi‐item questionnaire and a global assessment allows by one logistic regression, to estimate the weights of the dimensions and items in populations, and thus identify those whose improvement would most contribute to the QOL of the greatest number. A combined approach to measurement of QOL is necessary to maximise the utility of QOL interventions. (shrink)

Due to advances in medicine, a malignant neoplasm is a chronic disease that can be treated for a lot of patients for many years. It may lead to profound changes in everyday life and may induce fear of life. The ability to adjust to a new situation may depend on temperamental traits and stress coping strategies. The research presented in this paper explores the relationships between quality of life, PTSD symptoms, temperamental traits, and stress coping (...) in a sample of patients diagnosed with cancer. One hundred and twenty nine participants aged 24–81 years, 69 females diagnosed with breast cancer and 60 males diagnosed with lung cancer completed Formal Characteristics of Behavior – Temperament Inventory, Coping Inventory for Stressful Situations, PTSD Inventory, and Quality of life SF-36 questionnaire. Higher level of emotional reactivity and higher level of perseveration was associated with lower emotional quality of life. Higher level of emotion oriented-coping and higher level of avoidant-distracted coping was associated with higher level of PTSD symptoms. Emotion-oriented coping and avoidant-distracted coping are ineffective in dealing with stress in the case of patients diagnosed with cancer, because they are associated with a higher level of PTSD symptoms. The significance of temperamental traits for quality of life in the situation of the patients is marginal. Control of specific factors concerned with current health and treatment status is needed the future research. (shrink)

In the context of a global pandemic, there is good health-based reason for governments to impose various social distancing measures. However, such measures also cause economic and other harms to people at low risk from the virus. In this paper, I examine how to make such trade-offs in a way that is respectfully justifiable to their losers. I argue that existing proposals like using standard QALY (quality-adjusted life-year) valuations or WELLBYs (wellbeing-adjusted life-years) as the (...) currency for trade-offs do not allow such justification, because they give weight to utilities that are irrelevant in a life-and-death context. Drawing on work on restricted aggregation in ethics, I articulate an alternative framework for balancing claims arising from prospects of different kinds of harm and benefit, and show how it can be applied to reasoning about trade-offs in a pandemic context. (shrink)

Lifetime quality-adjusted life-year (QALY) prioritarianism has recently been defended as a reasonable specification of the prioritarian view that benefits to the worse off should be given priority in health-related priority setting. This paper argues against this view with reference to how it relies on implausible assumptions. By referring to lifetime QALY as the basis for judgments about who is worse off lifetime QALY prioritarianism relies on assumptions of strict additivity, atomism and intertemporal separability of sublifetime attributes. These (...) assumptions entail that a health state at some period in time contributes with the same amount to how well off someone is regardless of intrapersonal and interpersonal distributions of health states. The paper argues that this is implausible and that prioritarians should take both intrapersonal and interpersonal distributions of goods into account when they establish who is worse off. They should therefore not accept that lifetime QALY is a reasonable ground for ascribing priority and reject lifetime QALY prioritarianism. (shrink)

This paper argues that the Quality Adjusted Life Year or QALY is fatally flawed as a way of priority setting in health care and of dealing with the problem of scarce resources. In addition to showing why this is so the paper sets out a view of the moral constraints that govern the allocation of health resources and suggests reasons for a new attitude to the health budget.

Quality Adjusted Life Years (QALYs) have become a household word among health economists. Their use as a means of comparing the value of health programmes and medical interventions has stirred up controversy in the medical profession and the academic community. In this paper, I argue that QALY analysis does not adequately take into account the differentiated nature of the health state values it measures. Specifically, it does not distinguish between needs and preferences with respect to its (...) valuation of health states. I defend the view that needs and preferences are clearly distinguishable, and that the concept of needs cannot be dispensed with, as many health economists suggest. It is argued that the scale along which health states are measured in QALY analysis is not a continuous interval scale, but one which concerns two distinctly different value dimensions. Measuring the values of health state intervals may reveal the weighting attached to the different value dimensions. (shrink)

The use of the Quality Adjusted Life-Year (QALY) as a measure of the benefit obtained from health care expenditure has been attacked on the ground that it gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled. The reason for this is that the quality of life of those with illness or disability is ranked, on the (...) QALY scale, below that of someone without a disability or illness. Hence we can, other things being equal, gain more QALYs by saving the lives of those without a permanent disability or illness than by saving the lives of those who are disadvantaged in these ways. But to do so puts these disadvantaged people under a kind of double jeopardy. Not only do they suffer from the disability or illness, but because of it, a low priority is given to forms of health care that can preserve their lives. This, so the objection runs, is unjust or unfair. This article assesses this objection to the use of QALYs as a basis for allocating health care resources. It seeks to determine what is sound in the double jeopardy objection, and then to show that the defender of QALYs has an adequate response to it. (shrink)

Medical resource allocation is a controversial topic, because in the end it prioritises some peoples’ medical problems over those of others. This is less controversial when there is a clear clinical reason for such a prioritisation, but when such a reason is not available people might perceive it as deeming certain individuals more important than others. This article looks at the role of social utility in medical resource allocation, in a situation where the clinical outcome would be identical if either (...) person received the treatment. This situation is explored with a focus on the United Kingdom, but its conclusions have wider applications to any system where healthcare is tax-payer funded. The article proposes an experience adjusted life years system, and discusses its strengths and weaknesses. (shrink)

That the maximization of quality-adjusted life years violates concerns for fairness is well known. One approach to face this issue is to elicit fairness preferences of the public empirically and to incorporate the corresponding equity weights into cost-utility analysis (CUA). It is thereby sought to encounter the objections by means of an axiological modification while leaving the value-maximizing framework of CUA intact. Based on the work of Lübbe (2005, 2009a, 2009b, 2010, forthcoming), this paper questions this (...) strategy and scrutinizes the concomitant assumptions concerning the nature of prioritization decisions. Empirical studies indicate that these premises are in fact unwarranted. People chose a certain resource allocation because they perceive it as a fair way to treat the persons concerned, not because it maximizes something valuable, and it is questionable if prioritization decision can be represented as value-maximizing choices at all. This reflection on the fundamental distinction between deontological and consequentialist reasoning bears general implications for the scope of ‘economic imperialism.’. (shrink)

Counting QALYs (quality adjusted life years) has been proposed as a way of deciding how resources should be distributed in the health service: put resources where they will produce the most QALYs. This proposal has encountered strong opposition. There has been a disagreement between some economists favouring QALYs and some philosophers opposing them. But the argument has, I think, mostly been at cross-purposes. Those in favour of QALYs point out what they can do, and those against (...) point out what they can't. There need be no disagreement about this. What is needed is to sort out what is the proper domain of QALYs, and it may be possible to do this amicably. Then we may be able to get on with the more useful job of deciding how well QALYs perform within their domain. In this paper I shall try to accomplish the first task (sections II–IV), and make a start on the second (sections V–VIII). (shrink)

Events regarding individuals’ preferences that do not always follow from standard measures such as “value of statistical life” or “quality-adjusted life years” as well as events that occur in some market-related settings which distort the information conveyed by price mechanisms, suggest that a notable chunk of what Hayek called “local knowledge” remains inaccessible by scientific tools and that only the individuals who interact in these local frameworks can have access to it. This casts serious doubt (...) on the epistemic possibility of economic calculation for if events in the local world do not observe the economic models, it is hard to see how central planners can have knowledge on them. Refined modeling strategies and cutting-edge Artificial Intelligence systems do not manage to overcome this hurdle. They may provide huge datasets in a data model, but since not all events represented in the data model are embeddable in known economic models, the knowledge problem is not evaded. Even if a theory ever manages to capture all possible events as they appear in the data model then we are left with a relationship between models (the theoretical model and the data model) with no direct access to the local world and thus the problem of accessibility of local knowledge remains unresolved. (shrink)

The use of Quality-Adjusted Life Years (QALYs) in healthcare allocation has been criticized as discriminatory against people with disabilities. This article considers a response to this criticism from Nick Beckstead and Toby Ord. They say that even if QALYs are discriminatory, attempting to avoid discrimination – when coupled with other central principles that an allocation system should favour – sometimes leads to irrationality in the form of cyclic preferences. I suggest that while Beckstead and Ord have (...) identified a problem, it is a misdiagnosis to lay it at the feet of an anti-discrimination principle. The problem in fact comes from a basic tension between respecting reasonable patient preferences and other ways of ranking treatment options. As such, adopting a QALY system does not solve the problem they identify. (shrink)

Despite progress, discrimination in public health remains a problem. A significant aspect of this problem relates to how medical resources are allocated. The paradigm of quality-adjusted-life-year (QALY) dictates that medical resources should be allocated on the basis of units measured as length of life and quality of life that are expected after the implementation of a treatment. In this article, I discuss some of the ethical shortcomings of QALY, by focusing on some of its (...) flawed moral aspects, as well as the way it relates to discrimination on the basis of age, race, and disability status. I argue that while this approach seeks to maximize efficiency, it does not place sufficient value on the preservation of life itself. Even more concerning is the fact that the use of QALY disproportionately harms minorities. While QALY is a well-intentioned approach to the allocation of scarce healthcare resources, new alternatives must be sought. (shrink)

Allocation of very scarce medical interventions such as organs and vaccines is a persistent ethical challenge. We evaluate eight simple allocation principles that can be classified into four categories: treating people equally, favouring the worst-off, maximising total benefits, and promoting and rewarding social usefulness. No single principle is sufficient to incorporate all morally relevant considerations and therefore individual principles must be combined into multiprinciple allocation systems. We evaluate three systems: the United Network for Organ Sharing points systems, quality-adjusted (...) life-years, and disability-adjusted life-years. We recommend an alternative system—the complete lives system—which prioritises younger people who have not yet lived a complete life, and also incorporates prognosis, save the most lives, lottery, and instrumental value principles. (shrink)

I would like to thank Whitehurst et al for their comments on my paper.1 Although I will argue their approach will not eliminate the potential for disability discrimination from quality-adjusted life year -based assessment, their comments were very thought provoking. Whitehurst et al argue that, to the extent that allocating healthcare by QALYs discriminates against disabled patients, the fault is not with the QALY framework, but with ‘the descriptive systems of preference-based health-related quality of life (...) instruments’.1 Specifically, they argue that some HRQoL survey instruments do not characterise health impairments adequately. For example, Whitehurst et al mention an earlier study of HRQoL survey instruments that had different ways of asking about mobility. Some instruments asked specifically about the respondent’s ability to walk, while others asked about mobility. The study found that, in relation to individuals with spinal cord injuries, survey instruments focused on ability to walk produced lower quality of life scores than instruments focused on mobility. Whitehurst et al argue from this that survey instruments should include ‘adequate’ health state descriptions. This seems eminently sensible. However, contrary to their view, there is no guarantee that this will avoid discrimination. In fact, …. (shrink)

Introduction: The coronavirus disease 2019 pandemic has placed intensive care units (ICU) triage at the center of bioethical discussions. National and international triage guidelines emerged from professional and governmental bodies and have led to controversial discussions about which criteria—e.g. medical prognosis, age, life-expectancy or quality of life—are ethically acceptable. The paper presents the main points of agreement and disagreement in triage protocols and reviews the ethical debate surrounding them. Sources of data: Published articles, news articles, book chapters, (...) ICU triage guidelines set out by professional societies and health authorities. Areas of agreement: Points of agreement in the guidelines that are widely supported by ethical arguments are (i) to avoid using a first come, first served policy or quality-adjusted life-years and (ii) to rely on medical prognosis, maximizing lives saved, justice as fairness and non-discrimination. Areas of controversy: Points of disagreement in existing guidelines and the ethics literature more broadly regard the use of exclusion criteria, the role of life expectancy, the prioritization of healthcare workers and the reassessment of triage decisions. Growing points: Improve outcome predictions, possibly aided by Artificial intelligence (AI); develop participatory approaches to drafting, assessing and revising triaging protocols; learn from experiences with implementation of guidelines with a view to continuously improve decision-making. Areas timely for developing research: Examine the universality vs. context-dependence of triaging principles and criteria; empirically test the appropriateness of triaging guidelines, including impact on vulnerable groups and risk of discrimination; study the potential and challenges of AI for outcome and preference prediction and decision-support. (shrink)

Summary measures of health, such as the quality-adjusted life year and disability-adjusted life year, have long been known to incorporate a number of value choices. In this paper, though, I show that the value choices in the construction of such measures extend far beyond what is generally recognized. In showing this, I hope both to improve the understanding of those measures by epidemiologists, health economists and policy-makers, and also to contribute to the general debate about (...) the extent to which such measures should be adjusted to reflect ethical values. (shrink)

Two principles form the basis for much priority setting in health. According to the greater benefit principle, resources should be directed toward the intervention with the greater health benefit. According to the worse off principle, resources should be directed toward the intervention benefiting those initially worse off. Jointly, these principles accord with so-called prioritarianism. Crucial for its operationalisation is the specification of the worse off. In this paper, we examine how the worse off can be defined as those with the (...) fewer lifetime Quality-Adjusted Life Years (QALYs). We contrast this proposal with several alternative specifications. (shrink)

In the popular folklore three-score-years-and-ten is treated as a fair innings for people, and thereby serves as an informal reference point for judgements about distributive justice within a community. But length of life alone is an insufficient basis for such judgements - a person's health-related quality-of-life also needs to be taken into account. If one of the objectives of public policy is to reduce inequalities in lifetime health, it will be demonstrated that this is very likely (...) to require systematic discrimination against the older members of a community. The notion of community solidatity will also be tested, because a decision will need to be made as to whether the same fair innings applies to all members of the community, or whether some are entitled to more than others. The strength of the fair innings principle is that it brings these issues to the fore in a systematic way which should ais their resolition in a practical context. (shrink)

One widely used method for allocating health care resources involves the use of cost-effectiveness analysis (CEA) to rank treatments in terms of quality-adjusted life-years (QALYs) gained. CEA has been criticized for discriminating against people with disabilities by valuing their lives less than those of non-disabled people. Avoiding discrimination seems to lead to the ’QALY trap’: we cannot value saving lives equally and still value raising quality of life. This paper reviews existing responses to the (...) QALY trap and argues that all are problematic. Instead, we argue that adopting a moderate form of prioritarianism avoids the QALY trap and disability discrimination. (shrink)

This paper presents a case for allocating health care resources so as to maximise Quality Adjusted Life Years (QALYs). Throughout parallels are drawn with the grounds for adopting utilitarianism. QALYs are desirable because they are essential for human flourishing and goal-attainment. In conditions of scarcity the principle of QALY maximisation may involve unequal treatment of different groups of people; and it is argued that this is not objectionable. Doctors in their dealings with patients should not be (...) continually consulting the principle (though it can sometimes be useful); instead by following existing ethical codes more QALYs will be produced overall. In the formulation of policy, however, the principle should be applied in a thoroughgoing way and, if it is, it will not have some of the counterintuitive consequences it may have in interpersonal situations. (shrink)

NICE must not say people are not worth treatingThe National Institute for Health and Clinical Excellence has proposed that drugs for the treatment of dementia be banned to National Health Service patients on the grounds that their cost is too high and “outside the range of cost effectiveness that might be considered appropriate for the NHS”i.1This is despite NICE’s admission that these drugs are effective in the treatment of Alzheimer’s disease and despite NICE having approved even more expensive treatments. The (...) effect is that thousands of Alzheimer’s patients will be denied the only treatment available. It is difficult to think of this as anything but wickedness or folly or more likely both. At the same time, and with no apparent sense of irony, NICE has launched a public consultation document3 on its guidelines on social value judgments. As we shall see these guidelines are ethically illiterate as well as socially divisive.Assuming permanently scarce resources it is clearly crucial that such healthcare resources as are available are not wasted. This point is often made in terms of cost effectiveness and it is argued, not implausibly, that to talk of cost effectiveness implies that we are able to measure just how cost effective each treatment is. To do so of course we need a standard of measurement. NICE has adopted the ubiquitous, but justly infamous QALY, the Quality Adjusted Life Year.The QALY combines life expectancy after treatment with measures of the expected quality of that life. There are two ways in which QALYS can be used. They 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, in short which of two different treatments is the more …. (shrink)

The rapid development of vaccines against COVID‐19 represents a huge achievement, and offers hope of ending the global pandemic. At least three COVID‐19 vaccines have been approved or are about to be approved for distribution in many countries. However, with very limited initial availability, only a minority of the population will be able to receive vaccines this winter. Urgent decisions will have to be made about who should receive priority for access. Current policy in the UK appears to take the (...) view that those who are most vulnerable to COVID‐19 should get the vaccine first. While this is intuitively attractive, we argue that there are other possible values and criteria that need to be considered. These include both intrinsic and instrumental values. The former are numbers of lives saved, years of life saved, quality of the lives saved, quality‐adjusted life‐years (QALYs), and possibly others including age. Instrumental values include protecting healthcare systems and other broader societal interests, which might require prioritizing key worker status and having dependants. The challenge from an ethical point of view is to strike the right balance among these values. It also depends on effectiveness of different vaccines on different population groups and on modelling around cost‐effectiveness of different strategies. It is a mistake to simply assume that prioritizing the most vulnerable is the best strategy. Although that could end up being the best approach, whether it is or not requires careful ethical and empirical analysis. (shrink)

The paper proposes a new method of researching public opinion for the purposes of valuing the outcomes of healthcare interventions. The issue I address is that, under the quality-adjusted life-year system, disabled patients face a higher cost-effectiveness hurdle than able-bodied patients. This seems inequitable. The author considers the alternative approaches to valuing healthcare interventions that have been proposed, and shows that all of them face the same problem. It is proposed that to value an outcome, instead of (...) researching the general public, the population that is to be targeted with the intervention should be researched. (shrink)

Sen’s capabilities approach offers a radical generalisation of the conventional approach to welfare economics. It has been highly influential in development and many researchers are now beginning to explore its implications for health care. This paper contributes to the emerging debate by discussing two examples of such applications: first, at the individual decision making level, namely the right to die, and second, at the social choice level. For the first application, which draws on Nussbaum’s list of capabilities, it is argued (...) that many capabilities are ambiguously or indirectly related to the right to die, but the ability to form a concept of the good life and plan one’s own life provides a direct justification for such a right. In the second application, the focus is specifically on healthcare rationing and it is argued that, although not committed to age based rationing, the capabilities approach provides a more natural justification of age related access to health care than the fair innings argument, which is often used to justify the alleged ageism inherent in quality adjusted life years maximisation. (shrink)

Estimates of the burden of disease assess the mortality and morbidity that affect a population by producing summary measures of health such as quality-adjusted life years and disability-adjusted life years. These measures typically do not include stillbirths among the negative health outcomes they count. Priority-setting decisions that rely on these measures are therefore likely to place little value on preventing the more than three million stillbirths that occur annually worldwide. In contrast, neonatal deaths, (...) which occur in comparable numbers, have a substantial impact on burden of disease estimates and are commonly seen as a pressing health concern. In this article we argue in favor of incorporating unintended fetal deaths that occur late in pregnancy into estimates of the burden of disease. Our argument is based on the similarity between late-term fetuses and newborn infants and the assumption that protecting newborns is important. We respond to four objections to counting stillbirths: that fetuses are not yet part of the population and so their deaths should not be included in measures of population health; that valuing the prevention of stillbirths will undermine women's reproductive rights; that including stillbirths implies that miscarriages should also be included; and that birth itself is in fact ethically significant. We conclude that our proposal is ethically preferable to current practice and, if adopted, is likely to lead to improved decisions about health spending. (shrink)

This paper considers the problems that arise when death, which is a philosophically difficult concept, is incorporated into healthcare metrics, such as the quality-adjusted life year (QALY). These problems relate closely to the debate over euthanasia and assisted suicide because negative QALY scores can be taken to mean that patients would be ‘better off dead’. There is confusion in the literature about the meaning of 0 QALY, which is supposed to act as an ‘anchor’ for the surveyed (...) preferences on which QALYs are based. In the context of the debate over euthanasia, the QALY assumes an ability to make meaningful comparisons between life-states and death. Not only is this assumption questionable, but the ethical debate is much more broad than the question of whether death is preferable to a state of living. QALYs are derived from preferences about health states, so do not necessarily reflect preferences about events (eg, dying) or actions (eg, killing). This paper presents a new kind of problem for the QALY. As it stands, the QALY provides confused and unreliable information when it reports zero or negative values, and faces further problems when it appears to recommend death. This should preclude its use in the debate over euthanasia and assisted suicide. These problems only apply where the QALY involves or seems to involve a comparison between life-states and death, and are not relevant to the more general discussion of the use of QALYs as a tool for comparing the benefits derived from treatment options. (shrink)

Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to (...) public values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such. There are no data in this work. (shrink)

The authors refute Harris’s criticism of the work of NICE and in turn criticise his description of the institute’s positionHarris’s recent editorial,1It’s not NICE to discriminate, is long on both polemic and invective but short on scholarship. He offers nothing to illuminate the debate about allocating health care in circumstances of finite resources; he has no understanding of the quality adjusted life year and its use in health economic evaluation; and he makes ill researched, unsubstantiated charges against (...) the institute and its advisory bodies.ALLOCATING HEALTHCARE RESOURCESThe British National Health Service , like every other healthcare system in the world, has finite resources. How the NHS’s budget should be most appropriately allocated is a very specific example of the more general problem of distributive justice.2The NHS, with its requirement3 to provide all care that is “necessary and appropriate”, was founded with an egalitarian purpose. Yet despite its laudable emphasis on fairness, the implementation of the NHS’s egalitarian approach remains uncertain. What is necessary? What is appropriate? How should the tensions between the service’s egalitarian aspirations, and the need to provide health care from finite resources, be resolved? On what principles should these allocative decisions be made?Utilitarianism, with its goal to maximise overall good, is another approach. Yet experience with the original Oregon plan demonstrated that, when rigidly applied, it can yield solutions that most find unacceptable—for example, tooth capping taking precedence over emergency appendectomy.4 Moreover, some versions of utilitarianism can allow the interests of minorities to be overridden by the majority; and it has next to nothing to offer in eradicating health inequalities.There is no single, broadly accepted, theory of distributive justice …. (shrink)

Harris’ reply to our defence of the National Institute for Clinical Excellence’s (NICE) current cost-effectiveness procedures contains two further errors. First, he wrongly draws a conclusion from the fact that NICE does not and cannot evaluate all possible uses of healthcare resources at any one time and generally cannot know which National Health Service (NHS) activities would be displaced or which groups of patients would have to forgo health benefits: the inference is that no estimate is or can be made (...) by NICE of the benefits to be forgone. This is a non-sequitur. Second, he asserts that it is a flaw at the heart of the use of quality-adjusted life years (QALYs) as an outcome measure that comparisons between people need to be made. Such comparisons do indeed have to be made, but this is not a consequence of the choice of any particular outcome measure, be it the QALY or anything else. (shrink)

The ethical problem of how to apportion limited resources amongst the needy has been forced on us by arbitrary limitation of health expenditure. Its solution would not be required if health expenditure were higher. Distribution of resources according to best value for money, assessed as Quality Adjusted Life Years (QALYs) per unit cost, has been suggested as a possible solution, but leads to absurd anomalies. In the calculation of QALYs the implied value of life is (...) no more than the absence of suffering. The use of QALYs for the comparison of treatments that are symptomatic or life-saving therefore leads to serious undervaluation of life and treatments that prolong it. Moreover, distribution of resources by best value for money, however assessed, is inequitable since for a given degree of suffering those whose illnesses happen to be cheaper to treat will be treated in preference to those whose treatments are more expensive. (shrink)

Harris levels two main criticisms against our original defence of QALYs (Quality Adjusted Life Years). First, he rejects the assumption implicit in the QALY approach that not all lives are of equal value. Second, he rejects our appeal to Rawls's veil of ignorance test in support of the QALY method. In the present article we defend QALYs against Harris's criticisms. We argue that some of the conclusions Harris draws from our view that resources should be allocated (...) on the basis of potential improvements in quality of life and quantity of life are erroneous, and that others lack the moral implications Harris claims for them. On the other hand, we defend our claim that a rational egoist, behind a veil of ignorance, could consistently choose to allocate life-saving resources in accordance with the QALY method, despite Harris's claim that a rational egoist would allocate randomly if there is no better than a 50% chance of being the recipient. (shrink)

In his 2015 book, Valuing Health, the philosopher, Daniel Hausman, in referring to experienced utility maximization, touches on the question of whether people accept, and ought to accept, the assumption of health maximization vis-à-vis their own lives. This essay introduces Hausman’s arguments on experienced utility, before outlining the intellectual catalyst for the renewed interest in the maximization of experienced utility as an appropriate ethical rule; namely, the literature that arose in the 1990s that demonstrated that due to the so-called gestalt (...) characteristics, an individual’s retrospective and prospective assessments of an event—i.e. the remembered and decision utilities associated with that event—often systematically differ from the utility that he/she experiences or can reasonably expect to experience during the same event. The essay then touches upon some of the implications that this debate has on assuming that the maximization of quality-adjusted life years is the best way to judge the relative worth of different health profiles. To conclude, it is argued that, although contextual, it is sometimes important to consider in the policy discourse the apparent effects of the gestalt characteristics on remembered and decision utility. (shrink)

The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients (...) are of short duration, it fares poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. (shrink)

Michael Rawlins and Andrew Dillon start their defence of Nice in fine polemical style, unfortunately polemics is all they have to offer. They totally fail to justify the Nice proposals on dementia treatments nor do they make any more plausible than formerly their use of the notorious QALY. They say:"Harris’s recent editorial, It’s not NICE to discriminate, is long on both polemic and invective – but short on scholarship. He offers nothing to illuminate the debate about allocating healthcare in circumstances (...) of finite resources; he has no understanding of the quality adjusted life year and its use in health economic evaluation; and he makes ill-researched, unsubstantiated and offensive charges against the Institute and its advisory bodies."Accusations are easy to make, difficult to substantiate. There are a number of claims here, only one of which is true. It is true that my editorial was robust, polemical if you like, but editorials are not the same as research papers and these are important issues which deeply affect real lives. Although Rawlins and Dillon affect to take the high ground their own article contains even more vigorous and much more personal invective than my editorial, I make no complaints. But as to the rest of what they say, well, let’s just see!They claim I offer nothing to illuminate resource allocation and that I have no understanding of the QALY. Both of these claims may well be true, but nothing they say goes any way to support these claims or even towards making them plausible. I have studied and written about the QALY for almost 20 years1,2,3,4,5,6,7,8,9,10,11,12,13,14,15 and Rawlins and Dillon show no evidence of any awareness or indeed any understanding of the issues, whether …. (shrink)

This paper conducts a cost–benefit analysis of Australia’s Covid-19 lockdown strategy relative to pursuit of a mitigation strategy in March 2020. The estimated additional deaths from a mitigation strategy are 11,500 to 40,000, implying a Cost per Quality Adjusted Life Year saved by locking down of at least 11 times the generally employed figure of $100,000 for health interventions in Australia. The lockdowns do not then seem to have been justified by reference to the standard benchmark. Consideration (...) of the information available to the Australian government in March 2020 yields a similar ratio and therefore the same conclusion that lockdown was not warranted. If Australia experiences a new outbreak, and cannot contain it without resort to a nationwide lockdown, the death toll from adopting a mitigation strategy at this point would be even less than had it done so in March 2020, due to the vaccination campaign, lessons learned since March 2020, and because the period over which the virus would then inflict casualties would now be much less than the period from March 2020. This would favour a mitigation policy even more strongly than in March 2020. This approach of assessing the savings in quality adjusted life years and comparing them to a standard benchmark figure ensures that all quality adjusted life years saved by various health interventions are treated equally, which accords with the ethical principle of equity across people. (shrink)

The COVID-19 crisis has forced a difficult trade-off between limiting the health impacts of the virus and maintaining economic activity. Welfare economics offers tools to conceptualize this trade-off so that policy-makers and the public can see clearly what is at stake. We review four such tools: the Value of Statistical Life (VSL); the Value of Statistical Life Years (VSLYs); Quality-Adjusted Life-Years (QALYs); and social welfare analysis, and argue that the latter are superior. We (...) also discuss how to choose policies that differentially affect people’s wellbeing. We argue in favor of evaluating policies using a Social Welfare Function (SWF), which evaluates the possible distributions of wellbeing across individuals that may result from a policy. Such a function, we argue, should regard increases in the wellbeing of the less well-off as especially valuable. We then use a model to illustrate how such a framework can help evaluate two broad policy types in response to the pandemic: eradication of the virus, and more lenient control of the spread. Our model reveals how such evaluations depend on many empirical facts but also on key value judgments about the relative importance of health and on the extent of special concern for the worse off. The purpose of this brief is not to make precise recommendations, as conditions vary widely across countries and over time, but to provide a methodology. (shrink)

Comparative valuation of different policy interventions often requires interpersonal comparability of benefit. In the field of health economics, the metric commonly used for such comparison, quality adjusted life years (QALYs) gained, has been criticized for failing to respect the equality of all persons’ intrinsic worth, including particularly those with disabilities. A methodology is proposed that interprets ‘full quality of life’ as the best health prospect that is achievable for the particular individual within the relevant (...) budget constraint. This calibration is challenging both conceptually and operationally as it shifts dramatically when technology or budget developments alter what can be achieved for incapacitated individuals. The proposal nevertheless ensures that the maximal achievable satisfaction of one person’s preferences can carry no more intrinsic value than that of another. This approach, which can be applied to other domains of social valuation, thus prevents implicit discrimination against the elderly and those with irremediable incapacities. (shrink)

Many ethical theorists believe that a given distribution of healthcare is morally justified only if (1) it is cost-effective and (2) it does not discriminate against older adults and disabled people. However, if (3) cost-effectiveness involves maximizing the number of quality-adjusted life-years (QALYs) added by a given unit of healthcare resource, or cost, it seems the pursuit of cost-effectiveness will inevitably discriminate against older adults and disabled patients. I show why this trilemma is harder to escape (...) than some theorists think. We cannot avoid it by using age- or disability-weighted QALY scores, for example. I then explain why there is no sense of “discrimination” on which discrimination isbothunjust, and thus something healthcare rationing must avoid,andsomething cost-effective healthcare rationing inevitably involves. I go on to argue that many of the reasons we have for not favoring rationing that maximizes QALYs outside the healthcare context apply in healthcare as well. Thus, claim (1) above is dubious. (shrink)

Democratic societies find it difficult to reach consensus concerning principles for healthcare distribution in the face of resource constraints. At the same time the need for legitimacy of allocation decisions has been recognised. Against this background, the National Institute for Health and Clinical Excellence (NICE) aspires to meet the principles of procedural justice, specifically the conditions of accountability for reasonableness as espoused by Daniels and Sabin, that is, publicity, relevance, revisions and appeal, and enforcement. Although NICE has adopted a highly (...) standardised approach and continuously publishes key documents on its website, its technology appraisal programme does not fulfil the publicity condition of accountability for reasonableness. Economic models are not made sufficiently transparent to enable public scrutiny, and decision criteria other than cost-effectiveness remain enigmatic. NICE’s reliance on cost-utility analysis and “plausible” cost-per-quality-adjusted life year (QALY) benchmarks further raises serious issues with regard to the relevance condition of accountability for reasonableness. This is illustrated by counterintuitive cost-per-QALY rankings that are difficult to justify using reflective equilibrium methods, and by the current debate surrounding expensive therapies for rare diseases (“orphan” treatments). In addition, an excessive focus on QALYs may stand in the way of exploiting the best available effectiveness evidence. The NICE mechanism for revision and appeals is also more restrictive than provided in accountability for reasonableness. As to the enforcement condition, no effective quality assurance processes are in place for technology assessments, and implementation of guidance remains imperfect. NICE, despite impressive efforts, appears to have a long way to go before meeting the conditions of accountability for reasonableness. (shrink)