It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper offers and (...) defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

This article considers the possible relation between the idea of parity and some past work on the allocation of scarce resources. Parity of value is first connected with the idea of some goods being irrelevant in interpersonal comparisons. The notion of moral parity is introduced to describe the recognition that people who are moral equals (even when they are not on a par in terms of value) as not substitutable. The relation between a Separability Test and nonsubstitutability of persons is (...) considered. These ideas are then used to discuss various cases in which one must choose to whom to provide medical assistance, including whether and when to distinguish morally between a disabled and a nondisabled person. (shrink)

A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall—any negative impacts on welfare are due to social injustice. This article argues that Barnes’s Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad—by itself it makes a person worse off, apart from a non-accommodating environment; (...) (2) universally bad—it lowers quality of life for every intellectually disabled person; and (3) globally bad—it reduces a person’s overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior—lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference. (shrink)

Adaptation to illness, and its relevance for distribution in health care, has been the subject of vigorous debate. In this paper I examine an aspect of this discussion that seems so far to have been overlooked: that some illnesses are difficult, or even impossible, to adapt to. This matters because adaptation reduces suffering. Illness severity is a priority setting criterion in several countries. When considering severity, we are interested in the extent to which an illness makes a person worse-off. I (...) argue that no plausible theory of well-being can disregard suffering when determining to what extent someone is worse-off in terms of health. We should accept, all else equal, that adapting to an illness makes the illness less severe by reducing suffering. Accepting a pluralist theory of well-being allows us to accept my argument, while still making room for the possibility that adaptation is sometimes, all things considered, bad. Finally, I argue that we should conceptualize adaptability as a feature of illness, and thereby account for adaptation on a group level for the purposes of priority setting. (shrink)

BackgroundResuscitation and treatment of critically ill newborn infants is associated with relatively high mortality, morbidity and cost. Guidelines relating to resuscitation have traditionally focused on the best interests of infants. There are, however, limited resources available in the neonatal intensive care unit, meaning that difficult decisions sometimes need to be made. This study explores the intuitions of lay people regarding resource allocation decisions in the NICU.MethodsThe study design was a cross-sectional quantitative survey, consisting of 20 hypothetical rationing scenarios. There were (...) 119 respondents who entered the questionnaire, and 109 who completed it. The respondents were adult US and Indian participants of the online crowdsourcing platform Mechanical Turk. Respondents were asked to decide which of two infants to treat in a situation of scarce resources. Demographic characteristics, personality traits and political views were recorded. Respondents were also asked to respond to a widely cited thought experiment involving rationing.ResultsThe majority of respondents, in all except one scenario, chose the utilitarian option of directing treatment to the infant with the higher chance of survival, higher life expectancy, less severe disability, and less expensive treatment. As discrepancy between outcomes decreased, however, there was a statistically significant increase in egalitarian responses and decrease in utilitarian responses in scenarios involving chance of survival, life expectancy, and cost of treatment. In the classic ‘lifeboat’ scenario, all but two respondents were utilitarian.ConclusionsThis survey suggests that in situations of scarcity and equal clinical need, non-health professionals support rationing of life-saving treatment based on probability of survival, duration of survival, cost of treatment or quality of life. However, where the difference in prognosis or cost is very small, non-health professionals preferred to give infants an equal chance of receiving treatment. (shrink)

In intensive care, disputes sometimes arise when patients or surrogates strongly desire treatment, yet health professionals regard it as potentially inappropriate. While professional guidelines confirm that physicians are not always obliged to provide requested treatment, determining when treatment would be inappropriate is extremely challenging. One potential reason for refusing to provide a desired and potentially beneficial treatment is because (within the setting of limited resources) this would harm other patients. Elsewhere in public health systems, cost effectiveness analysis is sometimes used (...) to decide between different priorities for funding. In this paper, we explore whether cost-effectiveness could be used to determine the appropriateness of providing intensive care. We explore a set of treatment thresholds: the probability threshold (a minimum probability of survival for providing treatment), the cost threshold (a maximum cost of treatment), the duration threshold (the maximum duration of intensive care), and the quality threshold (a minimum quality of life). One common objection to cost-effectiveness analysis is that it might lead to rationing of life-saving treatment. The analysis in this paper might be used to inform debate about the implications of applying cost-effectiveness thresholds to clinical decisions around potentially inappropriate treatment. (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)

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)

This paper discusses “impartiality thought experiments”, i.e., thought experiments that attempt to generate intuitions which are unaffected by personal characteristics such as age, gender or race. We focus on the most prominent impartiality thought experiment, the Veil of Ignorance (VOI), and show that both in its original Rawlsian version and in a more generic version, empirical investigations can be normatively relevant in two ways: First, on the assumption that the VOI is effective and robust, if subjects dominantly favor a certain (...) normative judgment behind the VOI this provides evidence in favor of that judgment; if, on the other hand, they do not dominantly favor a judgment this reduces our justification for it. Second, empirical investigations can also contribute to assessing the effectiveness and robustness of the VOI in the first place, thereby supporting or undermining its applications across the board. (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)

This essay contends that individual liberty, understood as the permissibility of making choices about one’s own health care in support of one’s own good and the good of one’s family utilizing private resources, is central to the moral foundations of a health care system. Such individual freedoms are important not only because they often support more efficient and effective health care services, but because they permit individuals to fulfill important moral duties. A comparative study of the health care systems in (...) Hong Kong and mainland China is utilized to illustrate the conceptual and moral concerns at stake. Both regions have implemented two-tier health care systems with a public tier of basic health care services together with a second tier of privately purchased health care. As we document, Hong Kong permits patients and doctors significantly greater opportunities to choose private health care of typically higher medical quality than their mainland counterparts. As a result, individuals are able to obtain higher quality health care while also fulfilling important moral duties for themselves and their families. In this sense, Hong Kong’s health care system is morally superior to mainland China’s. In each case, Confucianism’s concerns regarding equality are partly satisfied through the provision of public health care services on the basic tier, while appropriate use of private resources in support of oneself and one’s family is permissibly exercised on the private tier. Although it is true that inequalities in health care access and outcome are inevitable within a system that permits such individual freedoms, we argue that such inequalities are morally justifiable in terms of Confucian ethical thought. (shrink)

The article addresses the problem of disability in the context of reproductive decisions based on genetic information. It poses the question of whether selective procreation should be considered as a moral obligation of prospective parents. To answer this question, a number of different ethical approaches to the problem are presented and critically analysed: the utilitarian; Julian Savulescu's principle of procreative beneficence; the rights-based. The main thesis of the article is that these approaches fail to provide any appealing principles on which (...) reproductive decisions should be based. They constitute failures of imagination which may result in counter-intuitive moral judgments about both life with disability and genetic selection. A full appreciation of the ethical significance of recognition in procreative decisions leads to a more nuanced and morally satisfying view than other leading alternatives presented in the article. (shrink)

Some philosophers and segments of the public think age is relevant to healthcare priority-setting. One argument for this is based in equity: “Old” patients have had either more of a relevant good than “young” patients or enough of that good and so have weaker claims to treatment. This article first notes that some discussions of age-based priority that focus in this way on old and young patients exhibit an ambiguity between two claims: that patients classified as old should have a (...) low priority, and that patients classified as young should have high priority. The author next argues, drawing on a problem raised by Christine Overall, that equity cannot justify giving “old” patients low priority, since there is wide variety in the total lifetime experiences of older people, partly influenced by gender, race, class, and disability injustice. Finally, the author suggests that there might be a limited role for age-based prioritization in the context of infant and childhood death, since those who die in childhood are always and uncontroversially among the worst-off. (shrink)

Some authors view the veil of ignorance as a preferred method for allocating resources because it imposes impartiality by stripping deliberators of knowledge of their personal identity. Using some prominent examples of such reasoning in the health care sector, I will argue for the following claims. First, choice behind a veil of ignorance often fails to provide clear guidance regarding resource allocation. Second, regardless of whether definite results could be derived from the veil, these results do not in themselves have (...) important moral standing. This is partly because the veil does not determine which features are morally relevant for a given distributive problem. Third, even when we have settled the question of what features to count, choice behind a veil of ignorance arguably fails to take persons seriously. Ultimately, we do not need the veil to solve distributive problems, and we have good reason to appeal to some other distributive model. (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)

Harris argues that if QALYs are used only 50% of the population will be eligible for survival, whereas if random methods of allocation are used 100% will be eligible. We argue that this involves an equivocation in the use of "eligible", and provides no support for the random method. There is no advantage in having a 100% chance of being "eligible" for survival behind a veil of ignorance if you still only have a 50% chance of survival once the veil (...) is lifted. A 100% chance of a 50% chance is still only a 50% chance. We also argue that Harris provides no plausible way of dealing with the criticism that his random method of allocation may result in the squandering of resources. (shrink)

In this paper I will juxtapose the concept of the veil of ignorance – a fundamental premise of Rawlsian justice as fairness – and solidarity in the context of the organisation of a healthcare system. My hypothesis is that the veil of ignorance could be considered a rhetorical tool that supports compassion solidarity. In the concept of the veil of ignorance, I will find some crucial features of compassion solidarity within the Rawlsian concept of “reciprocity” – located between “impartiality” and (...) “mutual advantage”. I conclude that, even behind this “thick” veil, some essential, yet “particular” facts on health and wealth redistribution are available to decision makers. Lastly, I discover that by means of the assumption of self-interest in the original position the veil aims to convert egoism into empathy, thus invoking the solidarity of compassion that in turn could be translated into principles of the organisation of a healthcare system. (shrink)

As the demand for healthcare rises, so does the need for priority setting in healthcare. In this paper, I consider a prominent priority-setting principle: proportional shortfall. My purpose is to argue that proportional shortfall, as a principle, should not be adopted. My key criticism is that proportional shortfall fails to consider past health.Proportional shortfall is justified as it supposedly balances concern for prospective health while still accounting for lifetime health, even though past health is deemed irrelevant. Accounting for this lifetime (...) perspective means that the principle may indirectly consider past health by accounting for how far an individual is from achieving a complete, healthy life. I argue that proportional shortfall does not account for this lifetime perspective as it fails to incorporate the fair innings argument as originally claimed, undermining its purported justification.I go on to demonstrate that the case for ignoring past health is weak, and argue that past health is at least sometimes relevant for priority-setting decisions. Specifically, when an individual’s past health has a direct impact on current or future health, and when one individual has enjoyed significantly more healthy life years than another.Finally, I demonstrate that by ignoring past illnesses, even those entirely unrelated to their current illness, proportional shortfall can lead to instances of double jeopardy, a highly problematic implication. These arguments give us reason to reject proportional shortfall. (shrink)

Consider two cases. In Case 1, you must decide whether you save the life of a disabled person or you save the life of a person with no disability. In Case 2, you must decide whether you save the life of a disabled person who would remain disabled, or you save the life of another disabled person who, in contrast, would also be cured as a result of your intervention. It seems that most people agree that you should give equal (...) chances in Case 1: saving the life of the person with no disability would be unfair discrimination against the person with disability. Yet, in Case 2, it appears that many people believe that you are at least permitted to save straightaway the person who would have no disability after your intervention. There would be no unfair discrimination against the other person. I argue that these judgments present a puzzle for theories of resource allocation in normative ethics. The puzzle is straightforward for consequentialists: the two cases have the same outcomes, but the judgments are different. But the puzzle also presents a problem for nonconsequentialist views. After introducing the cases, I show this by reviewing a number of proposals for solving the puzzle. I argue that none of these proposals are successful. I then make my own proposal and conclude by spelling out its implications. (shrink)

Allocating scarce organs to transplant candidates is only one stage in the long process of organ transplantation. Before being listed, all candidates must undergo a rigorous assessment by a multidisciplinary transplant team. The Department of Health and NHS Blood and Transplant (NHSBT) are responsible for the development of detailed strategies to ensure a fair and objective assessment experience for all transplant candidates. Difficulties arise when particularly vulnerable candidates, such as candidates with psychiatric illnesses, are assessed. NHSBT has already developed unique (...) assessment guidelines for alcoholic and substance-abusing liver transplant candidates to allow for a more comprehensive evaluation, but candidates with psychiatric illnesses are still assessed against general criteria. Should these candidates be assessed against their own criteria? On what clinical grounds do transplant teams justify excluding such candidates from transplantation? Is redress available for candidates who feel they have been unfairly refused a liver transplant simply because of their psychiatric illness? This essay will critically examine the provisions published by the Department of Health and NHSBT for the assessment of liver transplant candidates with psychiatric illnesses, and will provide a commentary as to whether enough is being done to protect these particularly vulnerable candidates from inconsistent assessment decisions. (shrink)

A principle claiming equal entitlement to continued life has been strongly defended in the literature as a fundamental social value. We refer to this principle as ‘equal value of life'. In this paper we argue that there is a general incompatibility between the equal value of life principle and the weak Pareto principle and provide proof of this under mild structural assumptions. Moreover we demonstrate that a weaker, age-dependent version of the equal value of life principle is also incompatible with (...) the weak Pareto principle. However, both principles can be satisfied if transitivity of social preference is relaxed to quasi-transitivity. Footnotes1 The authors are grateful to Luc Bovens, Kristian Schultz Hansen, Søren Holm, Franz Huber, Wiebke Kuklys, Gabriella Pigozzi, and two anonymous referees for detailed and very helpful comments on earlier versions of this paper. Any errors and shortcomings are the responsibility of the authors alone. (shrink)

At times decisions are made in the field of genetics that are presented as if the ethical debates have been adequately treated and so all moral considerations have been addressed, when the truth is very different. Nor is it always easy or desirable to separate the ethical, legal and social questions posed by new developments. The impact of developments in genetic science upon communities is one field of enquiry that envelops each of these areas.This paper explores the impact of genetics (...) upon communities through focusing, in particular, upon certain developments in reproductive science. After introducing core issues and technologies, it discusses particular ethical concerns in relation to the ‘shadow’ of eugenics over such developments, before exploring the role of legislative debates and procedures in transforming social attitudes, values and hence norms. It then turns to consider debates concerning the ‘quality of life ethic’ now prevalent in healthcare, and moves on to discuss the issue of genetic discrimination – focusing, in particular, upon discrimination against disabled persons as a representative instance of the actual ethical and social/communitarian implications of the foregoing. It ends by highlighting the need to discern the ways in which the ethics of genetics is presently shaped and practised in order to discern better the particular social and communitarian implications of certain technological advances. (shrink)

The normative principle that every individual is equally entitled to continued life is a subject of debate in ethics, health economics and policy. We reconsider this principle in the context of setting priorities for healthcare interventions. When applied without restriction, the principle overlooks quality of life concerns entirely. However, we contend that it remains ethically relevant in certain situations, particularly when patients suffer from conditions unrelated to the therapeutic areas and treatments under consideration. Thus, we defend the principle while also (...) emphasizing the need for its application within tight limits. (shrink)