Background: Severity plays an essential role in healthcare priority setting. Still, severity is an under-theorised concept. One controversy concerns whether severity should be risk- and/or time-sensitive. The aim of this article is to provide a normative analysis of this question. Methods: A reflective equilibrium approach is used, where judgements and arguments concerning severity in preventive situations are related to overall normative judgements and background theories in priority-setting, aiming for consistency. Analysis, discussion, and conclusions: There is (...) an argument for taking the risk of developing a condition into account, and we do this when we consider the risk of dying in the severity assessment. If severity is discounted according to risk, this will ‘dilute’ severity, depending on how well we are able to delineate the population, which is dependent on the current level of knowledge. This will potentially have a more far-reaching effect when considering primary prevention, potentially the de-prioritisation of effective preventive treatments in relation to acute, less-effective treatments. The risk arguments are dependent on which population is being assessed. If we focus on the whole population at risk, with T 0 as the relevant population, this supports the risk argument. If we instead focus on the population of as-yet (at T 0 ) unidentified individuals who will develop the condition at T 1, risk will become irrelevant, and severity will not be risk sensitive. The strongest argument for time-sensitive severity (or for discounting future severity) is the future development of technology. On a short timescale, this will differ between different diagnoses, supporting individualised discounting. On a large timescale, a more general discounting might be acceptable. However, we need to also consider the systemic effects of allowing severity to be risk- and time-sensitive. (shrink)

How should scarce healthcare resources be distributed? This is a contentious issue that became especially pressing during the pandemic. It is often emphasised that studies exploring public views about this question provide valuable input to the issue of healthcare priority setting. While there has been a vast number of such studies it is rarely articulated, more specifically, what the results from these studies would mean for the justification of principles for priority setting. On the (...) one hand, it seems unreasonable that public values would straightforwardly decide the ethical question of how resources should be distributed. On the other hand, in a democratic society, it seems equally unreasonable that they would be considered irrelevant for this question. In this paper we draw on the notion of reflective equilibrium and discuss the relevance and roles that empirical studies may plausibly have for justification in priority setting ethics. We develop a framework for analysing how different kinds of empirical results may have different kinds of implications for justification. (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)

With healthcare systems under pressure from scarcity of resources and ever‐increasing demand for services, difficult priority setting choices need to be made. At the same time, increased attention to patient involvement in a wide range of settings has given rise to the idea that those who are eventually affected by priority setting decisions should have a say in those decisions. In this paper, we investigate arguments for the inclusion of patient representatives in priority (...) class='Hi'>setting bodies at the policy level. We find that the standard justifications for patient representation, such as to achieve patient‐relevant decisions, empowerment of patients, securing legitimacy of decisions, and the analogy with democracy, all fall short of supporting patient representation in this context. We conclude by briefly outlining an alternative proposal for patient participation that involves patient consultants. (shrink)

This paper argues that accepting incommensurability can be a useful step for developing attractive hybrid theories to how to distribute scarce health-related resources. If one provides opportunity for distributive options to be incommensurable with respect to substantive criteria, one can hold on to substantive criteria while also providing room for decision processes to play a significant role. The paper also argues that the strategy of accepting incommensurability is preferable to the strategy of having substantive criteria establish sets of options that (...) are equally, explains why incommensurability gives us reason to go hybrid, and argues that reasons grounded in decision processes have properties that make them appropriate as “tiebreakers” in choice situations characterized by incommensurability. (shrink)

Healthcare priority-setting institutions have good reason to want to demonstrate that their decisions are morally justified—and those who contribute to and use the health service have good reason to hope for the same. However, finding a moral basis on which to evaluate healthcare priority-setting is difficult. Substantive approaches are vulnerable to reasonable disagreement about the appropriate grounds for allocating resources, while procedural approaches may be indeterminate and insufficient to ensure a just distribution. In this (...) paper, we set out a complementary, coherence-based approach to the evaluation of healthcare priority-setting. Drawing on Rawls, we argue that an institutional priority-setter’s claim to moral justification can be assessed, in part, based on the extent to which its many normative commitments are mutually supportive and free from dissonance; that is, on the ability to establish narrow reflective equilibrium across the normative content of a priority-setter’s policy and practice. While we do not suggest that the establishment of such equilibrium is sufficient for moral justification, we argue that failure to do so might—like the proverbial canary in the coalmine—act as a generalised warning that something is awry. We offer a theoretical argument in support of this view and briefly outline a practical method for systematically examining coherence across priority-setting policy and practice. (shrink)

Priority setting is inevitable to control expenditure on expensive medicines, but citizen support is often hampered by the workings of the ‘identified victim effect’, that is, the greater willingness to spend resources helping identified victims than helping statistical victims. In this paper we explore a possible cognitive debiasing strategy that is being employed in discussions on healthcare priority setting, which we call ‘empathy counterbalancing’ (EC). EC is the strategy of directing attention to, and eliciting empathy (...) for, those who might be harmed as a result of one-sided empathy for the very ill who needs expensive treatment. We argue that governments have good reasons to attempt EC because the identified victim effect distorts priority setting in ways that undermine procedural fairness. We briefly outline three areas of application for EC and suggest some possible mechanisms that might explain how EC might work, if at all. We then discuss four potential ethical concerns with EC. First, EC might have the counterproductive effect of reducing overall citizen support for public funding of expensive medical treatments, thereby undermining solidarity. Second, EC may give rise to a ‘competition in suffering’, which may have unintended side effects for patients who feature in attempts at EC. Third, there may be doubts about whether EC is effective. Fourth, it may be objected that EC comes down to emotional manipulation, which governments should avoid. We conclude that insofar these concerns are valid they may be adequately addressed, and that EC seems a promising strategy that merits further investigation. (shrink)

A comprehensive understanding of the ethics of the COVID-19 pandemic priorities must be sensitive to the influence of social inequality. We distinguish between ex-ante and ex-post relevance of social inequality for COVID-19 disadvantage. Ex-ante relevance refers to the distribution of risks of exposure. Ex-post relevance refers to the effect of inequality on how patients respond to infection. In the case of COVID-19, both ex-ante and ex-post effects suggest a distribution which is sensitive to the prevalence social inequality. On this basis, (...) we provide a generic fairness argument for the claim that welfare states ought to favour a healthcare priority scheme that gives particular weight to protecting the socially disadvantaged. (shrink)

When considering the introduction of a new intervention in a budget constrained healthcare system, priority setting based on fair principles is fundamental. In many jurisdictions, a multi-criteria approach with several different considerations is employed, including severity and cost-effectiveness. Such multi-criteria approaches raise questions about how to balance different considerations against each other, and how to understand the logical or normative relations between them. For example, some jurisdictions make explicit reference to a large patient benefit as such a (...) consideration. However, since patient benefit is part of a cost-effectiveness assessment it is not clear how to balance considerations of greater patient benefit against considerations of severity and cost-effectiveness. The aim of this paper is to explore the role of a large patient benefit as an independent criterion for priority setting in a healthcare system also considering severity and cost-effectiveness. By taking the opportunity cost of new interventions (i.e., the health forgone in patients already receiving treatment) into account, we argue that patient benefit has a complex relationship to priority setting. More specifically, it cannot be reasonably concluded that large patient benefits should be given priority if severity, cost-effectiveness, and opportunity costs are held constant. Since we cannot find general support for taking patient benefit into account as an independent criterion from any of the most discussed theories about distributive justice: utilitarianism, prioritarianism, telic egalitarianism and sufficientarianism, it is reasonable to avoid doing so. Hence, given the complexity of the role of patient benefit, we conclude that in priority practice, a large patient benefit should not be considered as an independent criterion, on top of considerations of severity and cost-effectiveness. (shrink)

Luck egalitarianism is a responsibility-sensitive theory of distributive justice. Its application to health and healthcare is controversial. This article addresses a novel critique of luck egalitarianism, namely, that it wrongfully discriminates against those responsible for their health disadvantage when allocating scarce healthcare resources. The philosophical literature about discrimination offers two primary reasons for what makes discrimination wrong (when it is): harm and disrespect. These two approaches are employed to analyze whether luck egalitarian healthcare prioritization should be considered (...) wrongful discrimination. Regarding harm, it is very plausible to consider the policies harmful but much less reasonable to consider those responsible for their health disadvantages a socially salient group. Drawing on the disrespect literature, where social salience is typically not required for something to be discrimination, the policies are a form of discrimination. They are, however, not disrespectful. The upshot of this first assessment of the discrimination objection to luck egalitarianism in health is, thus, that it fails. (shrink)

What are the criteria for reasonable clinical judgements? The reasonableness of macro-level decision-making has been much discussed, but little attention has been paid to the reasonableness of applying guidelines generated at a macro-level to individual cases. This paper considers a framework for reasonable clinical decision-making that will capture cases where relevant guidelines cannot reasonably be followed. There are three main sections. (1) Individual claims on healthcare from the point of view of concerns about equity are analysed. (2) The demands (...) of responsibility and equity on professional clinical performance are discussed, and how the combination of these demands emerges into seven requirements that constitute the framework is explored. Since this framework is developed to assist in reasonable clinical decision-making, practical implications of all these requirements are also suggested. (3) Challenges concerning the framework are discussed. First, a crucial presumption that the framework relies upon is considered—namely, clinicians’ willingness to justify their decisions as requested. Then how public deliberation may influence clinical decision-making is discussed. Next is a consideration of how clinicians’ need to have confidence in their own judgements in order to perform in a manner worthy of trust would be compatible with adherence to the framework supported by public deliberation. It is concluded that fair distribution in the interplay between macro- and micro-level considerations can be secured by legitimising procedures on each level, by ensuring well-organised and continuing public debate and by basing individual clinical judgements upon well-justified and principled normative bases. (shrink)

This paper develops an account of the normative basis of priority setting in health care as combining the values which a given society holds for the common good of its members, with the universal provided by a principle of common humanity. We discuss national differences in health basket in Europe and argue that health care decision-making in complex social and moral frameworks is best thought of as anchored in such a principle by drawing on the philosophy of need. (...) We show that health care needs are ethically ‘thick’ needs whose psychological and social construction can best be understood in terms of David Wiggins’s notion of vital need: a person’s need is vital when failure to meet it leads to their harm and suffering. The moral dimension of priority setting which operates across different societies’ health care systems is located in the demands both of and on any society to avoid harm to its members. (shrink)

The fair distribution of health resources is critical to health justice. But distributing healthcare equitably requires careful attention to the existing distribution of other resources, and the economic system which produces these inequalities. Health is strongly determined by socioeconomic factors, such as the effects of racism on the health of communities of colour, as well as the broader market-oriented healthcare and pharmaceutical systems that put the pursuit of profit above the alleviation of suffering. Two papers in this issue (...) confront health injustices at different scales, and make far-reaching recommendations for more just healthcare allocation policies. Orphan drugs are those that pharmaceutical companies are unwilling to develop unless they are offered financial incentives to do so. When a target patient group is very small, or very poor, producing drugs is unprofitable. If patients are to benefit from these drugs in a marketised pharmaceutical regime, governments must step in to provide incentives for research and development. Yet government spending ought to prioritise value for money, and is generally guided by a utilitarian framework. In the case of neglected tropical diseases, there is no moral conflict: large numbers of people would benefit greatly from these treatments. However, there are practical limitations: the governments of affected populations are often unable to fund incentives for research and development, and solidarity from elsewhere is limited.1 2 In the case of rare diseases, Global North governments usually can afford to incentivise the development of treatments to serve their populations, but given the small numbers of beneficiaries, doing so seems a questionable use of resources. Many Global North governments make an exception to the general utilitarian heuristic to accommodate the moral intuition that the claims of a person with a rare …. (shrink)

Much research aimed at developing measures for normative criteria to guide the assessment of healthcare resource allocation decisions has focused on health maximization, equity concerns and more recently approaches based on health capabilities. However, a widely embraced idea is that health resources should be allocated to meet health needs. Little attention has been given to the principle of need which is often mentioned as an alternative independent criteria that could be used to guide healthcare evaluations. This paper develops (...) a model and indicator of need satisfaction that aggregates the health needs of a population in a particular time period into a single measure that weights individual health needs by the severity of their ill health. The paper provides a first step towards formalizing the principle of need as a measurable objective for healthcare policy and we discuss some challenges for future research, including incorporating the duration of time into need-based health evaluations. (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)

Background:The global COVID-19 pandemic has imposed challenges on healthcare systems and professionals worldwide and introduced a ´maelstrom´ of ethical dilemmas. How ethically demanding situations are handled affects employees’ moral stress and job satisfaction.Aim:Describe priority-setting dilemmas, moral distress and support experienced by nurses and physicians across medical specialties in the early phase of the COVID-19 pandemic in Western Norway.Research design:A cross-sectional hospital-based survey was conducted from 23 April to 11 May 2020.Ethical considerations:Ethical approval granted by the Regional Research (...) Ethics Committee in Western Norway (131421).Findings:Among the 1606 respondents, 67% had experienced priority-setting dilemmas the previous two weeks. Healthcare workers who were directly involved in COVID-19 care, were redeployed or worked in psychiatry/addiction medicine experienced it more often. Although 59% of the respondents had seen adverse consequences due to resource scarcity, severe consequences were rare. Moral distress levels were generally low (2.9 on a 0–10 scale), but higher in selected groups (redeployed, managers and working in psychiatry/addiction medicine). Backing from existing collegial and managerial structures and routines, such as discussions with colleagues and receiving updates and information from managers that listened and acted upon feedback, were found more helpful than external support mechanisms. Priority-setting guidelines were also helpful.Discussion:By including all medical specialties, nurses and physicians, and various institutions, the study provides information on how the COVID-19 mitigation also influenced those not directly involved in the COVID-19 treatment of patients. In the next stages of the pandemic response, support for healthcare professionals directly involved in outbreak-affected patients, those redeployed or those most impacted by mitigation strategies must be a priority.Conclusion:Empirical research of healthcare workers experiences under a pandemic are important to identify groups at risks and useful support mechanisms. (shrink)

The aim of this article is to study the relationship between Epicureanism and pandemic priority-setting and to explore whether Epicurus's philosophy is compliant with the later developed utilitarianism. We find this aim interesting because Epicurus had a different way of valuing death than our modern society does: Epicureanism holds that death—understood as the incident of death—cannot be bad (or good) for those who die (self-regarding effects). However, this account is still consistent with the view that a particular death (...) can be bad for everyone else but those who die, such as family, friends, and society (other-regarding effects). During the pandemic, the focus has been on the number of deaths more than on the suffering and reduced well-being of those infected and the rest of society. However, since the pandemic requires prioritization, it is, on a utilitarian account, important to consider priorities that do the most good overall. In this article, we approach the harm of death from an Epicurean point of view, seeking to flesh out potential implications for pandemic priority-setting, and healthcare in general, using a case study of COVID-19 priority-setting. We also explore whether this would conflict with utilitarianism. We conclude that an Epicurean pandemic priority-setting approach would be different but, surprisingly, not radically different from many of the actual priority-setting decisions we saw under the COVID-19 pandemic. (shrink)

BackgroundThe idea that individuals are responsible for their health has been the focus of debate in the theoretical literature and in its concrete application to healthcare policy in many countries. Controversies persist regarding the form, substance and fairness of allocating health responsibility to the individual, particularly in universal, need-based healthcare systems.ObjectiveTo examine how personal health responsibility has been framed and rationalised in Norwegian key policy documents on priority setting.MethodsDocuments issued or published by the Ministry of Health (...) and Care Services between 1987 and 2018 were thematically analysed. We developed a predefined conceptual framework that guided the analysis. The framework included: the subject and object of responsibility, the level of conceptual abstraction, temporality, normative justificatory arguments and objections to the application of personal health responsibility.ResultsAs an additional criterion, personal health responsibility has been interpreted as relevant if: the patient’s harmful behaviour is repeated after receiving treatment, and if the success of the treatment is conditional on the patient’s behavioural change. When discussed as a retrospective criterion, considerations of reciprocal fairness have been dominant. When discussed as a prospective criterion, the expected benefit of treatment justified its relevance.ConclusionPersonal health responsibility appears to challenge core values of equality, inclusion and solidarity in the Norwegian context and has been repeatedly rejected as a necessary criterion for priority setting. However, the responsibility criterion seems to have some relevance in particular priority setting decisions. (shrink)

BackgroundNusinersen is one of an increasing number of new, expensive orphan drugs to receive authorization. These drugs strain public healthcare budgets and challenge principles for resource allocation. Nusinersen was introduced in the Norwegian public healthcare system in 2018. A national expert group consisting of physicians was formed to oversee the introduction and continuation of treatment in light of specific start and stop criteria.MethodsWe have studied experiences within the expert group with a special emphasis on their application of the (...) start and stop criteria, rationing of treatment, and experienced moral dilemmas. A research interview with six members of the national expert group was performed, then analysed with manifest content analysis. The analysis was supplemented with publically available sources on priority setting and the process leading up to the introduction of nusinersen and the establishment of the expert group.ResultsSixty-six patients have received treatment within the first 25 months since the national expert group’s establishment. Treatment has not been discontinued for any patient. No patients under 18 years of age have been denied treatment, as those who were referred at this age were all deemed to fulfill the start criteria. The expert group has, however, increased geographical treatment equity and facilitated important cooperation at the national level. Furthermore, it has enhanced open and critical discussions of both medical issues and new ethical dilemmas.ConclusionAlthough facilitating equal access to treatment for SMA patients, the national expert group has not discontinued treatment for any patient. It is suggested that in order for clinicians to be able to ration care for individual patients, they require both adequate support and sufficient formal authority. Start and stop criteria need to be re-evaluated as more knowledge and experience are gained regarding the treatment. (shrink)

Background Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses’ prioritizations in their work to achieve well-being and health for nursing home residents. Aim The aim of this study was to explore nursing home nurses’ priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. Research design, participants, and research context (...) We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. Ethical considerations Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). Findings We identified an overarching theme—nursing home nurses struggling on multiple fronts, “just do it”—and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives’ expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. Conclusions Nurses’ priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses’ priorities. Nursing home nurses need organizational and managerial support to prioritize. (shrink)

Published accounts of specific priority-setting projects in healthcare are relatively few. This article chronicles the collaborative efforts of a professional practice lead and a bioethicist to strengthen the priority-setting process for a specific home care service. The project included two features not often reported in other priority-setting projects: the entire “frontline team” was involved for the project’s duration, and a group of parents was canvassed for their views. Informed by both Daniels’s “accountability for (...) reasonableness” approach and challenges levied against it, the article explains the evolution of an assessment procedure, eligibility and priority criteria, and guiding substantive principles and concludes with the “lessons learned” by the project leads. (shrink)

Frailty is a state of increased vulnerability to poor resolution of homeostasis after a stressor event. Frailty is most frequently assessed in the old using the Clinical Frailty Scale (CSF) which ranks frailty from 1 to 9. This assessment typically takes less than one minute and is not validated in patients with learning difficulties or those under 65 years old. The National Institute for Health and Care Excellence (NICE) developed guidelines that use “frailty” as one of the priority-setting (...) criteria for how scarce, but potentially lifesaving, health care resources should be allocated during the COVID-19 pandemic. Similar guidelines have been developed elsewhere. This paper discusses the ethical implications of such rationing and argues that this is an unproven and ethically problematic form of health care rationing. It specifically discusses: (1) how the frailty ascription becomes a self-fulfilling prophecy, (2) the problematic use of “frailty” in COVID-19 “triage,” (3) the circularity of the link between age and frailty, (4) indirect discrimination because of the use of a seemingly neutral criterion in health care rationing, and (5) the difficult link between comorbidities and frailty. It is found that there was no research into the use of global frailty scores as a criterion for access to acute treatment before January 2020 and so it is concerning how readily frailty scoring has been adopted to ration access to potentially lifesaving treatments. Existing gerontological frailty scoring systems have not been developed for this purpose, and repurposing them creates significant ethical issues. (shrink)

Objective: To determine whether a moral reasoning exercise can improve response quality to surveys of healthcare priorities Methods: A randomised internet survey focussing on patient age in healthcare allocation was repeated twice. From 2574 internet panel members from the USA and Canada, 2020 (79%) completed the baseline survey and 1247 (62%) completed the follow-up. We elicited respondent preferences for age via five allocation scenarios. In each scenario, a hypothetical health planner made a decision to fund one of two (...) programmes identical except for average patient age (35 vs 65 years). Half of the respondents (intervention group) were randomly assigned to receive an additional moral reasoning exercise. Responses were elicited again 7 weeks later. Numerical scores ranging from –5 (strongest preference for younger patients) to +5 (strongest preference for older patients); 0 indicates no age preference. Response quality was assessed by propensity to choose extreme or neutral values, internal consistency, temporal stability and appeal to prejudicial factors. Results: With the exception of a scenario offering palliative care, respondents preferred offering scarce resources to younger patients in all clinical contexts. This preference for younger patients was weaker in the intervention group. Indicators of response quality favoured the intervention group. Conclusions: Although people generally prefer allocating scarce resources to young patients over older ones, these preferences are significantly reduced when participants are encouraged to reflect carefully on a wide range of moral principles. A moral reasoning exercise is a promising strategy to improve response quality to surveys of healthcare priorities. (shrink)

Fair prioritization of healthcare resources has been on the agenda for decades, but resource allocation dilemmas in clinical practice remain challenging. Can clinical ethics committees be of help? The aim of the study was to explore whether and how CECs handle priority setting dilemmas and contribute to raising awareness of fairness concerns. Descriptions of activities involving priority setting in annual reports from Norwegian CECs were studied and categorized through qualitative content analysis. Three hundred thirty-nine reports (...) from 38 CECs were studied. We found 78 activities where resource use or priority setting were explicitly highlighted as main topics. Of these, 29 were seminars or other educational activities, 21 were deliberations on individual patient cases, whereas 28 were discussions of principled or general cases. Individual patient cases concerned various distributional dilemmas where values were at stake. Six main topics and seven roles for the CEC were identified. CECs handle issues concerning the introduction of new costly drugs, extraordinarily costly established treatment, the application of priority setting criteria, resource use for vulnerable groups, resource constraints compromising practice, and futility of care. The CEC can act as an analyst, advisor, moderator, disseminator, facilitator, watch dog, and guardian of values and laws. In order to fulfil their responsibilities in handling priority setting cases, CECs need knowledge of both the ethics and the institutionalized systems of priority setting. There is potential for developing this aspect of the CECs’ work further. The Norwegian CECs are involved in priority setting decisions where they can play multiple constructive roles. In particular, they advise and raise awareness of ethical aspects in resource allocations; bridge clinical practice with higher-level decisions; and promote fair resource allocation and stakeholder rights and interests. (shrink)

Background Fair prioritization of healthcare resources has been on the agenda for decades, but resource allocation dilemmas in clinical practice remain challenging. Can clinical ethics committees be of help? The aim of the study was to explore whether and how CECs handle priority setting dilemmas and contribute to raising awareness of fairness concerns. Method Descriptions of activities involving priority setting in annual reports from Norwegian CECs were studied and categorized through qualitative content analysis. Results Three (...) hundred thirty-nine reports from 38 CECs were studied. We found 78 activities where resource use or priority setting were explicitly highlighted as main topics. Of these, 29 were seminars or other educational activities, 21 were deliberations on individual patient cases, whereas 28 were discussions of principled or general cases. Individual patient cases concerned various distributional dilemmas where values were at stake. Six main topics and seven roles for the CEC were identified. CECs handle issues concerning the introduction of new costly drugs, extraordinarily costly established treatment, the application of priority setting criteria, resource use for vulnerable groups, resource constraints compromising practice, and futility of care. The CEC can act as an analyst, advisor, moderator, disseminator, facilitator, watch dog, and guardian of values and laws. Discussion In order to fulfil their responsibilities in handling priority setting cases, CECs need knowledge of both the ethics and the institutionalized systems of priority setting. There is potential for developing this aspect of the CECs’ work further. Conclusions The Norwegian CECs are involved in priority setting decisions where they can play multiple constructive roles. In particular, they advise and raise awareness of ethical aspects in resource allocations; bridge clinical practice with higher-level decisions; and promote fair resource allocation and stakeholder rights and interests. (shrink)

Priority setting in health care means making distributional decisions, which inherently involves limiting access to some health services. Public health ethics involves many ethical principles like efficiency, equity and individual choice, which are frequently appealed to but rarely analysed. How these concepts are understood and applied impacts on healthcare planning and delivery policies. This article discusses findings of a research study undertaken in the context of the Iranian health system in which two main ethical values appear to (...) be operating: equity and personal choice. It asserts that the pro-market perspective, driven by individual choice appears to be dominant as it is influenced by the powerful medical profession. This is despite egalitarian intentions proclaimed in the Constitution and the majority of national laws. The study argues that the market influence in healthcare priority setting is unlikely to diminish because of weak implementation of existing laws. In conclusion, the article suggests that the private health sector could help to achieve the state’s proclaimed egalitarian goals only if new regulatory systems and new systems of governance are implemented. Such measures should be aimed at monitoring and controlling the performance of the private sector, to better manage and harness its capacities. (shrink)

It is well documented that the higher the socioeconomic status (SES) of patients, the better their health and life expectancy. SES also influences the use of health services—the higher the patients' SES, the more time and specialised health services provided. This leads to the following question: should clinicians give priority to individual patients with low SES in order to enhance health equity? Some argue that equity is best preserved by physicians who remain loyal to ‘ordinary medical fairness’ in non-ideal (...) circumstances when health disparities persist; ie, doctors should allocate care according to needs only and treat everyone with equal regard by being neutral with respect to patients' SES. This paper furthers a discussion of this view by questioning how equitable needs relate to SES. To clarify, it distinguishes between four versions of ‘healthcare need’ and approaches an acceptable conceptualisation of the notion supported by Norman Daniels' theory on health equity. It concludes that doctors should remain neutral to patients' SES in cases in which several patients require the same health care. However, equitable health care requires considerations of the impact of socioeconomic factors (SEF) on patients' capacity to benefit from the care. Remaining neutral towards patients' SES in this respect does not promote equal regard. It follows that priority setting on the basis of SEF is required in fair clinical distribution of care, eg, through allocating more time to patients with low SES. In order to advance equity accurately, the concept of ordinary medical fairness should be amplified according to this clarification. (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)

Torbjörn Tännsjö has written a clear and thought-provoking book on healthcare priority setting. He argues that different branches of ethical theory—utilitarianism, egalitarianism, and prioritarianism—are in general agreement on real-world healthcare priorities, and that it is human irrationality that stands in the way of complying with their recommendations. While I am generally sympathetic to the overall project and line of argumentation taken by the book, this paper raises two concerns with Tännsjö’s argument. First, that he is wrong (...) to set aside deontic constraints as irrelevant or as pointing in the same direction as consequentialism. Secondly, that his argument against prioritarianism in favor of utilitarianism is insufficient and under-developed. Given these problems, I conclude that we should welcome Tännsjö’s contribution but with these qualifications in mind. (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)

This paper develops an account of how the implementation of ML models into healthcare settings requires revising the methodological apparatus of philosophical bioethics. On this account, ML models are cognitive interventions that provide decision-support to physicians and patients. Due to reliability issues, opaque reasoning processes, and information asymmetries, ML models pose inferential problems for them. These inferential problems lay the grounds for many ethical problems that currently claim centre-stage in the bioethical debate. Accordingly, this paper argues that the best (...) way to make progress in remedying these ethical problems is to distil their epistemic core and to identify appropriate epistemic norms as guardrails. The viability of this approach will be highlighted based on four key issues: trust, responsibility, paternalism, and fairness. In that respect, the paper also contributes to a more pronounced view of the specific methodological challenges for ethical theorizing, when the point of reference are complex statistical models that make predictions, rather than individual agents, acting for reasons. (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)

Background: Priority setting is necessary in current healthcare services. Discussion of fair process has highlighted the value of developing reasons for allocation decisions on the basis of experience gained from real cases.Aim: To identify the reasons that those with experience of real decision-making concerning resource allocation think relevant in deciding on the priority of a new but expensive drug treatment.Methods: Semistructured interviews with members of committees with responsibility for making resource allocation decisions at a local level (...) in the British National Health Service, analysed using modified grounded theory.Results: 22 interviews were carried out. 14 reasons were identified. Four reasons were almost universally considered most important: cost effectiveness; clinical effectiveness; equality and gross cost. No one reason was considered dominant. Some considerations, such as political directives and fear of litigation, were thought by many participants to distort decision-making. There was a substantial lack of agreement over the relevance of some reasons, such as the absence of alternative treatment for the condition.Conclusions: There is a clear consensus on the importance and role of a limited number of reasons in allocation decisions among participants. A focus on the process of decision-making, however, does not obviate the need for those involved in the process to engage with problematical ethical issues, nor for the importance of further ethical analysis. (shrink)

The present paper constitutes an introduction to a special issue of Diametros devoted to Setting Health-Care Priorities. What Ethical Theories Tell Us by Torbjörn Tännsjö. The book in question states that there are three moral theories which have valid implications in the field of the distribution of medical resources in a healthcare system: utilitarianism, the maximin/leximin view, and egalitarianism. A number of authors have contributed to this special issue with papers which challenge this thesis. Robert E. Goodin argues (...) that, besides general moral theories, some local principles of justice might be valid. Quinn Hiroshi Gibson states that Tännsjö should have considered the Rawlsian view on justice in its contractualist reading. Jay A. Zameska argues that his “revised lexical sufficientarianism” constitutes a more reliable moral view than prioritarianism. Finally, Lasse Nielsen points out that there is more to say about distributive justice than consequentialist theories can grasp. Moreover, he puts forward an argument in defense of prioritarianism. The final article in this issue constitutes Tännsjö’s replies to his critics. (shrink)

BackgroundThere is a lack of empirical research regarding the outcomes of such clinical ethics support methods as moral case deliberation. Empirical research in how healthcare professionals perceive potential outcomes is needed in order to evaluate the value and effectiveness of ethics support; and help to design future outcomes research. The aim was to use the European Moral Case Deliberation Outcome Instrument instrument to examine the importance of various MCD outcomes, according to healthcare professionals, prior to participation.MethodsA North European (...) field survey among healthcare professionals drawn from 73 workplaces in a variety of healthcare settings in the Netherlands, Norway and Sweden. The Euro-MCD instrument was used.ResultsAll outcomes regarding the domains of moral reflexivity, moral attitude, emotional support, collaboration, impact at organisational level and concrete results, were perceived as very or quite important by 76%–97% of the 703 respondents. Outcomes regarding collaboration and concrete results were perceived as most important. Outcomes assessed as least important were mostly about moral attitude. ‘Better interactions with patient/family’ emerged as a new domain from the qualitative analysis. Dutch respondents perceived most of the outcomes as significantly less important than the Scandinavians, especially regarding emotional support. Furthermore, men, those who were younger, and physician-respondents scored most of the outcomes as statistically significantly less important compared with the other respondents.ConclusionsThe findings indicate a need for a broad instrument such as the Euro-MCD. Outcomes related to better interactions between professionals and patients must also be included in the future. The empirical findings raise the normative question of whether outcomes that were perceived as less important, such as moral reflexivity and moral attitude outcomes, should still be included. In the future, a combination of empirical findings and normative reflection will contribute to the revision of the instrument. (shrink)

It is common to allocate scarce health care resources by maximizing QALYs per dollar. This approach has been attacked by disability-rights advocates, policy-makers, and ethicists on the grounds that it unjustly discriminates against the disabled. The main complaint is that the QALY-maximizing approach implies a seemingly unsatisfactory conclusion: other things being equal, we should direct life-saving treatment to the healthy rather than the disabled. This argument pays insufficient attention to the downsides of the potential alternatives. We show that this sort (...) of discrimination is one of four unpalatable consequences that any approach to priority setting in health care must face. We argue that, given the alternatives, it is far from clear that we should revise the QALY-maximizing approach in response to this objection. (shrink)

A necessary book for healthcare professionals and theologians struggling with moral questions about rationing in healthcare. This book outlines a Christian ethical basis for how decisions about health care funding and priority-setting ought to be made.

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)

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and (...) policy makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

Priority setting in healthcare is a highly contentious area of public decision making, in which different values often support incompatible policy options and compromise can be elusive. One promising approach to resolving priority-setting conflicts divides the decision-making process into two steps. In the first, a set of eligible options is identified; in the second, one of those options is chosen by a deliberative process. This paper considers the first step, examining proposals for identifying a set (...) of options eligible for deliberation. It focuses on the approach proposed by Anders Herlitz, which limits deliberation to options that are on a par; neither better or worse than, nor strictly equal to the alternatives. Once these “maximal” options are identified, the choice among them is made though a deliberative process that acknowledges the difficult tradeoffs which must be made. While parity and kindred notions are clearly useful in resolving some priority-setting conflicts, this paper argues that the conflicts that arise in setting priorities make it as difficult to decide which options are on a par as it is to decide among those options. The paper draws on priority-setting debates that occurred during the recent pandemic to illustrate the challenges in identifying eligible options: There may be sharp disagreement about how to understand and individuate relevant values; about whether certain values are relevant in a priority-setting context; about how to establish parity between “consequential” and “deontic” options, and about whether one option remains on a par with others after it is modified in various ways. (shrink)

Given resource constraints in healthcare, demands justice and equity require the constant development of material principles for resource distribution. In many cases, such material principles are formulated as mid-level principles, well-adapted to handle healthcare distribution but suffering from aspects outside the healthcare context that affect their application. In healthcare, factors outside the healthcare system will sometimes affect patients’ equal opportunity to receive treatment and achieve health. Examples of such factors might include an individual’s economic means, (...) the cost of drugs, geography, etc. This article explores whether the formal equality principle could help us address such problems. It is argued that the traditional (thin) formal equality principle can aid in priority setting, both as a heuristic tool to aid in consistency and also in handling under-determined cases. However, it appears to be too ‘thin’ to handle problems caused by factors outside the healthcare context. In the article, I explore a more robust version of the formal equality principle and argue that such a principle can be used to address such cases. However, even a more comprehensive formal equality principle will need to consider whether some other actors have a moral responsibility to address the problem or whether the issue could be solved more effectively by others. Furthermore, such a principle needs to consider whether the opportunity cost of achieving ‘thick’ formal equality is acceptable, given the material principles of distribution. (shrink)

There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient’s rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy (...) makers. We used a qualitative design to examine Swiss healthcare stakeholders’ experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries’ patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients’ rights and citizens’ involvement on the other. The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

PhD, Institute of Public Health, Unit of Medical Philosophy and Clinical Theory, University of Copenhagen, Øster Farimagsgade 5, P.O. Box 2099 1014 Copenhagen. Tel: +45 30 32 33 63; Email: s.lauridsen{at}pubhealth.ku.dk ' + u + '@ ' + d + ' '/ /- ->Citizens’ consent to political decisions is often regarded as a necessary condition of political legitimacy. Consequently, legitimate allocation of healthcare has seemed almost unattainable in contemporary pluralistic societies. The problem is that citizens do not agree on (...) any single principle governing priorities among groups of patients. The Accountability for Reasonableness framework suggests an ingenious solution to this problem of moral disagreement. Rather than advocating any substantive distributive principle, its advocates propose a feasible set of conditions, which, if met by decision makers at the institutional level, provide, so it is promised, legitimate decisions. While we agree that A4R represents an important contribution to the priority-setting debate, we challenge the framework in two respects. First, we argue that A4R, and more specifically the relevance condition of A4R, does not enable healthcare institutions to generally distinguish between relevant and irrelevant reasons for priority-setting. Second, we criticize Daniels’ and Sabin's argument that A4R and deliberative democracy constitute necessary and sufficient conditions of a feasible procedure for setting legitimate limits within healthcare. CiteULike Connotea Del.icio.us What's this? (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)

Both developing and developed countries face an increasing mismatch between what patients expect to receive from healthcare and what the public healthcare systems can afford to provide. Where there has been a growing recognition of the entitlement to receive healthcare, the frustrated expectations with regards to the level of provision has led to lawsuits challenging the denial of funding for health treatments by public health systems. This book analyses the impact of courts and litigation on the way (...) health systems set priorities and make rationing decisions. In particular, it focuses on how the judicial protection of the right to healthcare can impact the institutionalization, functioning and centrality of Health Technology Assessment (HTA) for decisions about the funding of treatment. Based on the case study of three jurisdictions - Brazil, Colombia, and England - it shows that courts can be a key driver for the institutionalization of HTA. These case studies show the paradoxes of judicial control, which can promote accountability and impair it, demand administrative competence and undermine bureaucratic capacities. The case studies offer a nuanced and evidence-informed understanding of these paradoxes in the context of health care by showing how the judicial control of priority-setting decisions in health care can be used to require and control an explicit scheme for health technology assessment, but can also limit and circumvent it. (shrink)

The impact and use of Information and Communication Technologies (ICTs) in healthcare settings has been increasing since 2019. This is greatly due to the COVID‐19 pandemic. But beyond accommodating an extraordinary and complex situation in terms of healthcare services, or beyond replacing personalised care delivered by healthcare professionals (HCPs), has there been a process of information and consultation for communities and HCPs? Do we have the basic requirements needed to make such use commonplace in health care? What (...) will the impact be on communities and their governance? Have we arrived here by consensus or by imposition? Our purpose has been to conduct a transnational analysis by approaching communities, social actors, and healthcare professionals in three territories in a pilot study following a qualitative methodology. The aim being to discover the potential impact of such measures beyond the right to health and if such measures are compatible with the purpose of population settling in rural areas. Furthermore, to identify if this entails a conflict of value and priorities or if we need new ethical reviews both for communities and healthcare professionals. (shrink)

At the 5th International Conference on Priorities in Health Care in Wellington, New Zealand, 2004, one resonating theme was that for priority setting to be effective, it has to include clinicians in both decision making and the enforcement of those decisions. There was, however, a disturbing undertone to this theme, namely that doctors, in particular, were unjustifiably thwarting good systems of prioritising scarce healthcare resources. This undertone seems unfair precisely because doctors may, and in some cases do, (...) feel obligated by their professional ethics to remain uninvolved either in deciding priorities and in some cases in enforcing them. I will argue that the professional role of a doctor ought not be considered inconsistent with the role of a priority setter or enforcer, as long as one crucial element is in place, a rationally coherent and broadly justifiable regime for prioritising healthcare. Given this I conclude both that prioritisation and doctoring are not incompatible under certain conditions, and that the education of healthcare professionals ought to include material on distributive justice in healthcare. (shrink)