In the Global Burden of Disease study, disease burden is measured as disability-adjusted life years (DALYs). The paramount assumption of the DALY is that it makes sense to aggregate years lived with disability (YLDs) and years of life lost (YLLs). However, this is not smooth sailing. Whereas morbidity (YLD) is something thathappens toan individual, loss of life itself (YLL) occurs when that individual’s life has ended. YLLs quantify something that involves no experience and does not take place among living individuals. (...) This casts doubt on whether the YLL is an individual burden at all. If not, then YLDs and YLLs are incommensurable. There are at least three responses to this problem, only one of which is tenable: a counterfactual account of harm. Taking this strategy necessitates a re-examination of how we count YLLs, particularly at the beginning of life. (shrink)

BackgroundThe state of the world is one with scarce medical resources where longevity is not equally distributed. Given such facts, setting priorities in health entails making difficult yet unavoidable decisions about which lives to save. The business of saving lives works on the assumption that longevity is valuable and that an early death is worse than a late death. There is a vast literature on health priorities and badness of death, separately. Surprisingly, there has been little cross-fertilisation between the academic (...) fields of priority setting and badness of death. Our aim is to connect philosophical discussions on the badness of death to contemporary debates in health priorities.DiscussionTwo questions regarding death are especially relevant to health priorities. The first question is why death is bad. Death is clearly bad for others, such as family, friends and society. Many philosophers also argue that death can be bad for those who die. This distinction is important for health priorities, because it concerns our fundamental reasons for saving lives. The second question is, ‘When is the worst time to die?’ A premature death is commonly considered worse than a late death. Thus, the number of good life years lost seems to matter to the badness of death. Concerning young individuals, some think the death of infants is worse than the death of adolescents, while others have contrary intuitions. Our claim is that to prioritise between age groups, we must consider the question of when it is worst to die.ConclusionsDeprivationism provides a more plausible approach to health priorities than Epicureanism. If Deprivationism is accepted, we will have a firmer basis for claiming that individuals, in addition to having a health loss caused by morbidity, will have a loss of good life years due to mortality. Additionally, Deprivationism highlights the importance of age and values for health priorities. Regarding age, both variants of Deprivationism imply that stillbirths are included in the Global Burden of Disease. Finally, we suggest that the Time-Relative Interest Account may serve as an alternative to the discounting and age weighting previously applied in the Global Burden of Disease. (shrink)

In health care priority setting different criteria are used to reflect the relevant values that should guide decision-making. During recent years there has been a development of value frameworks implying the use of multiple criteria, a development that has not been accompanied by a structured conceptual and normative analysis of how different criteria relate to each other and to underlying normative considerations. Examples of such criteria are unmet need and severity. In this article these crucial criteria are conceptually clarified and (...) analyzed in relation to each other. We argue that disease-severity and condition-severity should be distinguished and we find the latter concept better reflects underlying normative values. We further argue that unmet need does not fulfil an independent and relevant role in relation to condition-severity except for in some limited situations when having to distinguish between conditions of equal severity. (shrink)

Researchers have recently provided proof of concept for uterus transplantation, giving rise to a discussion about priority setting. This article analyses whether absolute uterine‐factor infertility (AUFI), the main indication for uterus transplantation, gives rise to a healthcare need and the extent to which such a need places justified claims on public funding in a needs‐based welfare system. It is argued that, regardless of the concept of health to which one subscribes, there is a healthcare need for uterus transplantation in women (...) with AUFI. The provision of alternative ways of addressing this need, such as surrogacy and adoption, reduces its severity. Hence, where such alternatives are publicly funded, uterus transplantation is unlikely to become cost‐effective. However, where surrogacy and adoption are not publicly funded, uterus transplantation should be given a similar priority level to other assisted reproductive technologies. In these circumstances, public funding for uterus transplants may well be justified, particularly in well‐funded healthcare system with relatively generous cost‐effectiveness thresholds. (shrink)

Health systems that provide for universal patient access through a scheme of prepayments—whether through taxes, social insurance, or a combination of the two—need to make decisions on the scope of coverage that they secure. Such decisions are inherently controversial, implying, as they do, that some patients will receive less than comprehensive health care, or less than complete protection from the financial consequences of ill-heath, even when there is a clinically effective therapy to which they might have access.Controversial decisions of this (...) sort call for a public justification for covering or not covering a given treatment. Priority-setting agencies play a key role in providing such a justification. A recent... (shrink)

In decisions about inclusion (or exclusion) of health care services in the benefit package, different interpretations of notions like health, health risk, disease, quality of life or necessary care often remain implicit. Yet they can lead to different benefit package decisions. After a brief discussion of these concepts in definitions of the goals of medicine, the various value-judgements implicit in interpretations of key notions in health care are analysed and conclusions are drawn with regard to the composition of decision making (...) bodies at various levels. It is further argued that such a body needs to discuss the various interpretations of key-notions explicitly in the various phases of a priority-setting procedure so that more consistent choices can be made in health care priority setting. (shrink)

This paper compares and contrasts three different substantive principles of justice for making health care priority-setting or “rationing” decisions: need principles, maximising principles and egalitarian principles. The principles are compared by tracing out their implications for a hypothetical rationing decision involving four identified patients. This decision has been the subject of an empirical study of public opinion based on small-group discussions, which found that the public seem to support a pluralistic combination of all three kinds of rationing principle. In conclusion, (...) it is suggested that there is room for further work by philosophers and others on the development of a coherent and pluralistic theory of health care rationing which accords with public opinions. (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)

Health care systems throughout the developed world face ‘crises’ of quality, financing and sustainability. These pressures have led governments to look for more efficient and equitable ways to allocate public resources. Prioritisation of health care services for public funding has been one of the strategies used by decision makers to reconcile growing health care demands with limited resources. Priority setting at the macro level has yet to demonstrate real successes. This paper describes international approaches to explicit prioritisation at the macro-governmental (...) level in the six experiences most published in the English literature; analyzes the ways in which values, principles and other normative concepts were presented in these international priority setting experiences; and identifies key elements of a more robust framework for ethical analysis which could promote meaningful and effective health priority setting. (shrink)

The Social Value Judgments consultation document reveals NICE’s failure to understand its role in healthcare prioritisationThe National Institute for Health and Clinical Excellence has published a draft guideline, Social Value Judgments: Guidelines for the Institute and its Advisory Bodies , which outlines the ethical framework that will guide its decision making in the future.1 NICE guidance has a profound effect upon the delivery of health care within the National Health Service so it is crucial that an overarching guideline such as (...) this is suited to the task that it needs to perform. In this paper we argue that NICE has misunderstood the way in which its advice fits into prioritisation decisions. This misunderstanding is amplified by its views about the ethical principles that should apply to prioritisation and, in particular, its failure to appreciate the role of fair processes in prioritisation.The national and international standing of NICE means that the definitive version of Social Value Judgments: Guidelines for the Institute and its Advisory Bodies is likely to have influence beyond the institute itself. There is much to welcome about the document, not least the acknowledgement that there are important ethical dimensions to NICE’s decision making. Indeed, the significance of the document lies in the fact that NICE is attempting to create an explicit ethical framework for funding decisions.There is, however, much that is of concern. Although John Harris has made some important points about the NICE position on age and sex,2 there are other important problems that need to be discussed. First, there appears to be confusion over the nature of the funding decisions taken by NICE and, as a result, the role of its guideline. It is of vital importance that professionals and public alike understand the precise nature of …. (shrink)

There is a growing body of literature which suggests that decisions about healthcare priority setting should take into account the extent to which patients are worse off. However, such decisions are often based on how badly off patients are with respect to the condition targeted by the treatment whose priority is under consideration (condition‐specific severity). In this paper I argue that giving priority to the worse off in terms of condition‐specific severity does not reflect the morally relevant sense of being (...) worse off. I conclude that an account of giving priority to the worse off relevant for healthcare priority setting should take into account how badly off patients are when all of their conditions are considered (holistic severity). (shrink)

In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which seem to (...) arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. (shrink)

This article investigates what notions of “just health care” are found at three Swedish hospitals among health care personnel and whether these notions are relevant to what priorities are actually made. Fieldwork at all three hospitals and 114 in-depth interviews were conducted. Data have been subject to conceptual and ethical analysis and categorisation. According to our findings, justice is an important idea to health care personnel at the studied hospitals. Two main notions of just health care were found. The main (...) idea was the notion of “equal treatment according to need”, the basic idea being that differences in treatment should be justified by differences in needs. The competing idea that merit should affect the treatment received is occasionally encountered, the idea here being that patients, by acting irresponsibly, may no longer deserve to be treated strictly according to needs. In practice, priorities are made on grounds that only partly comply with the basic idea of justice in health care, as it is understood by staff at the studied hospitals. Exceptions are made due to regional differences, considerations of cost-effectiveness, economic incentives, tradition, the daily patient flow, research, private alternatives, patient influence and favouritism of health care personnel. (shrink)

Medical criteria rooted in evidence-based medicine are often seen as a value-neutral ‘trump card’ which puts paid to any further debate about setting priorities for treatment. On this argument, doctors should stop providing treatment at the point when it becomes medically futile, and that is also the threshold at which the health purchaser should stop purchasing. This paper offers three kinds of ethical criteria as a counterweight to analysis based solely on medical criteria. The first set of arguments concerns futility, (...) probability and utility; the second, justice and fairness; the third, consent and competence. The argument is illustrated by two recent case studies about futility and priority-setting: the US example of ‘Baby Ryan’ and the UK case of ‘Child B’. (shrink)

Healthcare (including public health) is special because it protects normal functioning, which in turn protects the range of opportunities open to individuals. I extend this account in two ways. First, since the distribution of goods other than healthcare affect population health and its distribution, I claim that Rawls's principles of justice describe a fair distribution of the social determinants of health, giving a partial account of when health inequalities are unjust. Second, I supplement a principled account of justice for health (...) and healthcare with an account of fair process for setting limits or rationing care. This account is provided by three conditions that comprise "accountability for reasonableness.". (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)

Adds to the debate on priority setting by looking at experience from other countries.

Should organ transplants be given to patients who have waited the longest, or need it most urgently, or those whose survival prospects are the best? The rationing of health care is universal and inevitable, taking place in poor and affluent countries, in publicly funded and private health care systems. Someone must budget for as well as dispense health care whilst aging populations severely stretch the availability of resources. The Ethics of Health Care Rationing is a clear and much-needed introduction to (...) this increasingly important topic, considering and assessing the major ethical problems and dilemmas about the allocation, scarcity and rationing of health care. Beginning with a helpful overview of why rationing is an ethical problem, the authors examine the following key topics: What is the value of health? How can it be measured? What does it mean that a treatment is "good value for money"? What sort of distributive principles - utilitarian, egalitarian or prioritarian - should we rely on when thinking about health care rationing? Does rationing health care unfairly discriminate against the elderly and people with disabilities? Should patients be held responsible for their health? Why does the debate on responsibility for health lead to issues about socioeconomic status and social inequality? Throughout the book, examples from the US, UK and other countries are used to illustrate the ethical issues at stake. Additional features such as chapter summaries, annotated further reading and discussion questions make this an ideal starting point for students new to the subject, not only in philosophy but also in closely related fields such as politics, health economics, public health, medicine, nursing and social work. (shrink)

Some people are worse off than others. Does this fact give rise to moral concern? Egalitarianism claims that it does, for a wide array of reasons. It is one of the most important and hotly debated problems in moral and political philosophy, occupying a central place in the work of John Rawls, Thomas Nagel, G. A. Cohen and Derek Parfit. It also plays an important role in practical contexts such as the allocation of health care resources, the design of education (...) and tax systems, and the pursuit of global justice. Egalitarianism is a superb introduction to the problem of contemporary egalitarian theories. It explains how rival theories of egalitarianism evaluate distributions of people’s well-being, and carefully assesses the theoretical structure of each theory. It also examines how egalitarian theories are applied to the distribution of health and health care, thus bringing a deceptively complex philosophical debate into clear focus. Beginning with a brief introduction to basic terminology, Iwao Hirose examines the following topics: Rawlsian egalitarianism luck egalitarianism telic egalitarianism prioritarianism sufficientarianism equality and time equality in health and health care. Including chapter summaries, annotated further reading and a glossary, this is an ideal starting point for anyone studying distributive justice for the first time, and will also be of interest to more advanced students and researchers in philosophy, economics, political theory, public policy, and public health. (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)

All health care systems face problems of justice and efficiency related to setting priorities for allocating a limited pool of resources to a population. Because many of the central issues are the same in all systems, the United States and other countries can learn from the successes and failures of countries that have explicitly addressed the question of health care priorities. We review explicit priority setting efforts in Norway, Sweden, Israel, the Netherlands, Denmark, New Zealand, the United Kingdom and the (...) state of Oregon in the US. The approaches used can be divided into those centered on outlining principles versus those that define practices. In order to establish the main lessons from their experiences we consider the process each country used, criteria to judge the success of these efforts, which approaches seem to have met these criteria, and using their successes and failures as a guide, how to proceed in setting priorities. We demonstrate that there is little evidence that establishment of a values framework for priority setting has had any effect on health policy, nor is there evidence that priority setting exercises have led to the envisaged ideal of an open and participatory public involvement in decision making. (shrink)

PURPOSE: The purpose of this paper is to consider some of the philosophical and bioethical issues raised by the creation of the draft social values framework developed to facilitate data collection and country-specific presentations at the inaugural workshop on "Social values and health priority setting" held in February 2011. -/- DESIGN/METHODOLOGY/APPROACH: Conceptual analysis is used to analyse the term "social values", as employed in the framework, and its relationship to related ideas such as moral values. The structure of the framework (...) (process and content values) is considered in light of current debate in philosophy and bioethics about the political and moral aims served by these kinds of values, and the extent to which they are either suited to, or sufficient for, the policy context. -/- FINDINGS: There is much to be gained by engaging with the arguments presented in the philosophical literature in order to further refine the framework. The framework should remain neutral in respect of the importance of procedural values in different contexts and should be as inclusive as possible in respect of the principles it includes. Further development would be best served by taking a multidisciplinary approach. The framework could provide a valuable space in which future debates about procedural/substantive values can be considered. -/- ORIGINALITY/VALUE: The paper brings philosophical and bioethics perspectives to bear on a new framework proposed for the analysis of social values in health priority setting. It identifies how such a practical, policy-focused framework might be informed by engagement with deeper, and often unresolved, questions or principle around resource allocation in health. (shrink)