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)

Patients and physicians often perceive the current health care system to be unfair, in part because of the ways in which coverage decisions appear to be made. To address this problem the Ethical Force Program, a collaborative effort to create quality improvement tools for ethics in health care, has developed five content areas specifying ethical criteria for fair health care benefits design and administration. Each content area includes concrete recommendations and measurable expectations for performance improvement, which can be used by (...) those organizations involved in the design and administration of health benefits packages, such as purchasers, health plans, benefits consultants, and practitioner groups. (shrink)

Patients and physicians often perceive the current health care system to be unfair, in part because of the ways in which coverage decisions appear to be made. To address this problem the Ethical Force Program, a collaborative effort to create quality improvement tools for ethics in health care, has developed five content areas specifying ethical criteria for fair health care benefits design and administration. Each content area includes concrete recommendations and measurable expectations for performance improvement, which can be used by (...) those organizations involved in the design and administration of health benefits packages, such as purchasers, health plans, benefits consultants, and practitioner groups. (shrink)

Recent interpretations of citizenship are firmly rooted in the value of social membership and social participation. Citizens are described as having a moral right to draw upon the support of the community, but at the same time have a responsibility to contribute to the provision of social services such as health care. In contrast, contemporary health economics has been criticised for taking a narrow and individualistic view of human behaviour. This paper examines the extent to which economic theory and practice (...) have been developed to accommodate a more ‘civic’ view, namely, the notions of mutual concern for community members, social participation and social rights. It is argued that because the provision of health care is often linked to feelings of compassion and social responsibility and not just to individual well-being, this sort of insight may enrich economic analysis and, in turn, provide a way around health economics’ reputed ‘dead end’. (shrink)

The dominant rule of economic evaluation within health care posits that resources are distributed in order to maximize health benefit. There are instances, however, where the public has demonstrated that they do not prefer such an allocation scheme, particularly in the context of life-saving interventions. Objectives Deviations from preferences of maximizing health benefit have important implications on both financial and distributive levels. This study sought to specify the circumstances in which respondent preferences are inconsistent with maximizing health benefit. Methods Ninety (...) respondents recruited from the London School of Economics and Political Science completed a questionnaire comprised of a series of paired profiles involving various combinations of life-saving or quality-of-life enhancing interventions. Results The results indicate that saving a life holds value beyond that captured by traditional health benefit measurement and that the value of saving a life is not consistent across ages. More specifically, the value of saving a life was age-dependent and markedly attenuated for older-age patients. Conclusions Many respondents were willing to overlook maximizing health benefit in order to rescue a life in immediate peril, and showed a diminished sense of moral imperative to rescue older-age patients. In light of difficulties related to the implementation of larger-scale policies incorporating Rule of Rescue concerns, the most realistic approaches will likely involve adopting smaller-scale policies that address issues such as do not resuscitate and living wills. Potential policy solutions such as age or monetary thresholds for life-saving interventions may be favoured in a research context; however, their overall social feasibility is questionable. (shrink)

The overarching aim of this article is to scrutinize how severity can work as a qualifier for the moral impetus of malady. While there is agreement that malady is of negative value, there is disagreement about precisely how this is so. Nevertheless, alleviating disease, injury, and associated suffering is almost universally considered good. Furthermore, the strength of a diseased person’s moral claims for our attention and efforts will inevitably vary. This article starts by reflecting on what kind of moral impetus (...) malady incites. We then analyze how severity may qualify this impetus. We do so by discussing the relationship between severity and need, well-being and disvalue, death, urgency, rule of rescue, and distributive justice. We then summarize our thoughts about severity as a moral qualifier. We conclude that severity is, and should continue to be seen, as a morally significant concept that deserves continued attention in the future. (shrink)

Public healthcare systems are increasingly refusing (temporarily) to reimburse newly approved medical treatments of insufficient or uncertain cost-effectiveness. As both patient demand for these treatments and their list prices increase, a market might arise for voluntary additional health insurance (VHI) that covers effective but (very) expensive medical treatments. In this paper, we evaluate such potential future practices of VHI in public healthcare systems from a justice perspective. We find that direct (telic) egalitarian objections to unequal access to expensive treatments based (...) on different ability to afford VHI do not stand up to scrutiny. However, such unequal access might lead to loss of self-respect among individuals, or loss of fraternity within society, rendering it more difficult for citizens to interact on equal moral footing. This would be problematic from a relational egalitarian perspective. Moreover, the introduction of VHI might turn out to have negative consequences for the comprehensiveness and/or the quality of the public healthcare services that are offered to all patients equally through basic health insurance. These consequences must be weighed against potential health gains and the value of liberty. We conclude that governments should be careful when considering the introduction of VHI in public healthcare systems. (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)

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)

Is health care “special”? That is, do we have moral reason to treat health care differently from how we treat other sorts of social goods? Intuitively, perhaps, we might think the proper response is “yes.” However, to date, philosophers have often struggled to justify this idea—known as the “specialness thesis about health care” or STHC. In this article, I offer a new justification of STHC, one I take to be immune from objections that have undercut other defenses. Notably, unlike previous (...) utility- and opportunity-based theories, I argue that we can find normative justification for STHC in what I term our special duty to assist those unable to help themselves. It is this duty, I argue, that ultimately gives us reason to treat health care differently from other sorts of goods and to distribute it independently of individuals’ ability to pay. (shrink)

Periodic and unexpected shortages of drugs, biologics, and even medical devices have become commonplace in the United States. When shortages occur, hospitals and clinics need to decide how to ration their available stock. When such situations arise, institutions can choose from several different allocation schemes, such as first-come, first-served, a lottery, or a more rational and calculated approach. While the first two approaches sound reasonable at first glance, there are a number of problems associated with them, including the inability to (...) make fine, individual patient-centered decisions. They also do not discriminate between what kinds of patients and what types of uses may be more deserving or reasonable than others. In this article I outline an ethically acceptable procedure for rationing drugs during a shortage in which demand outstrips supply. (shrink)

The Institute of Medicine and the American Heart Association have issued a “call to action” to expand the performance of cardiopulmonary resuscitation in response to out-of-hospital cardiac arrest. Widespread advertising campaigns have been created to encourage more members of the lay public to undergo training in the technique of closed-chest compression-only CPR, based upon extolling the virtues of rapid initiation of resuscitation, untempered by information about the often distressing outcomes, and hailing the “improved” results when nonprofessional bystanders are involved. We (...) describe this misrepresentation of CPR as a highly effective treatment as the fetishization of this valuable, but often inappropriately used, therapy. We propose that the medical profession has an ethical duty to inform the public through education campaigns about the procedure's limitations in the out-of-hospital setting and the narrow clinical indications for which it has been demonstrated to have a reasonable probability of producing favorable outcomes. (shrink)

BackgroundHealth data holds great potential for improved treatments. Big data research and machine learning models have been shown to hold great promise for improved diagnostics and treatment planning. The potential is tied, however, to the availability of personal health data. In recent years, it has been argued that data from health records should be available for health research, and that individuals have a duty to make the data available for such research. A central point of debate is whether such secondary (...) use of health data requires informed consent.Main bodyIn response to recent writings this paper argues that a requirement of informed consent for health record research must be upheld. It does so by exploring different contrasting notions of the duty of easy rescue and arguing that none of them entail aperfectduty to participate in health record research. In part because the costs of participation cannot be limited to 1) the threat of privacy breaches, but includes 2) the risk of reduced trust and 3) suboptimal treatment, 4) stigmatization and 5) medicalisation, 6) further stratification of solidarity and 7) increased inequality in access to treatment and medicine. And finally, it defends the requirement of informed consent by arguing that the mere possibility of consent bias provides a rather weak reason for making research participation mandatory, and that there are strong, independent reasons for making.ConclusionArguments from the duty of easy rescue in combination with claims about little risk of harm and potential consent bias fail to establish not only aperfectduty to participate in health record research, but also that participation in such research should be mandatory. On the contrary, an analysis of these arguments indicates that the duty to participate in research is most adequately construed as animperfectduty, and reveals a number of strong reasons for insisting that participation in health records research is based on informed consent. (shrink)

The main aim of this paper is to investigate the views of healthcare professionals in Portugal about healthcare rationing, and compare them with the views of college students. A self-administered questionnaire was used to collect data from a sample of 60 healthcare professionals and 180 college students. Respondents faced a hypothetical rationing dilemma where they had to order four patients and justify their choices. Multinomial logistic regressions were used to test for differences in orderings, and content analysis to categorize the (...) written justifications. The findings suggest that both groups appeared to support three main rationing principles: health maximization, priority to the severely ill and priority to the young. However, professionals seemed to give less weight to the latter principle. In conclusion, professionals have similar views to students about healthcare rationing, though may be slightly less inclined to give priority to the young. (shrink)

Direct-to-consumer genetic testing is a growing phenomenon, fuelled by the notion that knowledge equals control. One ethical question that arises concerns the proband’s duty to share information indicating genetic risks in their relatives. However, such duties are unenforceable and may result in the realisation of anticipated harm to relatives. We argue for a shift in responsibility from proband to provider, placing a duty on test providers in the event of identified actionable risks to relatives. Starting from Parker and Lucassen’s 'joint (...) account model', we adapt Kilbride’s application of the rule of rescue and balance it against the relative’s right not to know, placing responsibility on the providers of direct-to-consumer genetic testing. Where the risk of disease to a relative is actionable, we argue providers ought to share results even in the face of the proband’s objections. Confidentiality issues are navigated by a pre-emptive consent model, whereby consumers agree to the sharing of certain information with their relatives ahead of testing and as a condition of testing. When a relative is informed, the proband’s privacy is protected by maximal deidentification, and the rights of the relative are met by a stepwise approach to informing that allows them to decide how much information they receive. (shrink)

Cost-effectiveness analysis suggests that a society should allocate its health care budget in order to achieve the greatest total health for its budget. However, in ‘rescue’ cases, where an individual’s life is in immediate peril, reasoning in terms of cost-effectiveness can appear inhumane. Hence considerations of cost-effectiveness and of rescue appear to be in tension. However, by attending to the division of labour in medical decision making it is possible to see how cost-effectiveness analysis and rescue-style reasoning are commonly combined (...) in an ethically acceptable fashion. (shrink)

In September 1994, theNew York Timescarried a front page article declaring healthcare reform dead in Congress. The obituary on healthcare followed a Congressional decision not to pursue the issue further in 1994. Although Congress and the President will likely revisit healthcare reform during 1995, the choices may be between various incremental steps, rather than substantive changes to bring about universal coverage.

The Covid-19 pandemic has led to a health crisis of a scale unprecedented in post-war Europe. In response, a large amount of healthcare resources have been redirected to Covid-19 preventive measures, for instance population-wide vaccination campaigns, large-scale SARS-CoV-2 testing, and the large-scale distribution of protective equipment to high-risk groups and hospitals and nursing homes. Despite the importance of these measures in epidemiological and economic terms, health economists and medical ethicists have been relatively silent about the ethical rationales underlying the large-scale (...) allocation of healthcare resources to these measures. The present paper seeks to encourage this debate by demonstrating how the resource allocation to Covid-19 preventive measures can be understood through the paradigm of the Rule of Rescue, without claiming that the Rule of Rescue is the sole rationale of resource allocation in the Covid-19 pandemic. (shrink)

In recent years a number of commentators have discussed the importance of measuring quality of life in health care. We want to know whether an intervention will help people to live better, not just longer, and whether some treatments cause more trouble than they are worth. New technologies promise wondrous benefits. But when millions of people have no insured access to health care, and when many others face increasingly stringent limits on care, technologies’ high costs require us to choose what (...) we should do from the broader universe of what we can do.The challenges to measuring QL are formidable. Researchers debate whether to measure general QL or disease-specific QL; whether to focus on functional status such as the patient's ability to walk and dress himself, or on the value people ascribe to that functional status; whether to seek the values of the general public, or to concentrate on people actually affected by a given disease or disability. (shrink)

In recent years a number of commentators have discussed the importance of measuring quality of life in health care. We want to know whether an intervention will help people to live better, not just longer, and whether some treatments cause more trouble than they are worth. New technologies promise wondrous benefits. But when millions of people have no insured access to health care, and when many others face increasingly stringent limits on care, technologies’ high costs require us to choose what (...) we should do from the broader universe of what we can do.The challenges to measuring QL are formidable. Researchers debate whether to measure general QL or disease-specific QL; whether to focus on functional status such as the patient's ability to walk and dress himself, or on the value people ascribe to that functional status; whether to seek the values of the general public, or to concentrate on people actually affected by a given disease or disability. (shrink)

By registering different health benefits on a common scale, CEA allows us to assess the relative social importance of different health care interventions and opens the way for the allocation decisions of health care policy. If it is really to be effective, however, CEA must be recalibrated so that it better reflects some of our widely held beliefs about the merits of different kinds of treatment.

Thirty years of debate have passed since the term “Rule of Rescue” has been introduced into medical ethics. Its main focus was on whether or why medical treatment for acute conditions should have priority over preventive measures irrespective of opportunity costs. Recent contributions, taking account of the widespread reluctance to accept purely efficiency-oriented prioritization approaches, advance another objection: Prioritizing treatment, they hold, discriminates against statistical lives. The reference to opportunity costs has also been renewed in a distinctly ethical fashion: It (...) has been stipulated that favoring help for identifiable lives amounts to a lack of benevolence for one’s fellow creatures. The present article argues against both objections. It suggests that the debate’s focus on consequences should be reoriented by asking which aspects of such states of affairs are actually attributable to a decision maker who judges within a specific situation of choice. (shrink)

The rule of rescue describes the moral impulse to save identifiable lives in immediate danger at any expense. Think of the extremes taken to rescue a small child who has fallen down a well, a woman pinned beneath the rubble of an earthquake, or a submarine crew trapped on the ocean floor. No effort is deemed too great. Yet should this same moral instinct to rescue, regardless of cost, be applied in the emergency room, the hospital, or the community clinic? (...) -/- In health care, the desire to save lives at any cost must be reconciled with the reality of resource scarcity. As one example, the estimated cost for prophylactic Factor VIII to treat one patient with hemophilia for one year is $300,000. Costs of this magnitude have been accepted by public and private insurers in the developed world, even though, in principle, these sums could provide greater overall health benefit if allocated to pay for the unmet health care needs of many other patients. Looking forward, however, broad application of the rule of rescue will be increasingly untenable. But the moral instinct will remain: the desire to help those weakest among us, especially when their small numbers allow us to see them as unique individuals. What, then, is the ethical framework that can guide coverage and reimbursement decisions for orphan drugs into the future? (shrink)

Antimicrobial resistance (AMR) describes the evolution of treatment‐resistant pathogens, with potentially catastrophic consequences for human medicine. AMR is driven by the over‐prescription of antibiotics, and could be reduced through consideration of the ethical dimensions of the dilemma faced by doctors. This dilemma involves balancing apparently opposed interests of current and future patients, and unique contextual factors in different countries, which may modify the core dilemma. We describe three example countries with different economic backgrounds and cultures—South Africa, Sri Lanka and the (...) United Kingdom. Then we discuss how country‐specific factors impact on the prominence of various ethical dimensions of the dilemma (visibility and moral equality of future generations; Rule of Rescue; prescribing autonomy and conflicts of interest; consensus on collective action). We conclude that a nuanced understanding of national prescribing dilemmas is critical to inform the design of effective stewardship approaches. (shrink)

Disaster planning challenges our morality. Everyday rules of action may need to be suspended during large-scale disasters in favour of maxims that that may make prudential or practical sense and may even be morally preferable but emotionally hard to accept, such as tsunami-tendenko. This maxim dictates that the individual not stay and help others but run and preserve his or her life instead. Tsunami-tendenko became well known after the great East Japan earthquake on 11 March 2011, when almost all the (...) elementary and junior high school students in one city survived the tsunami because they acted on this maxim that had been taught for several years. While tsunami-tendenko has been praised, two criticisms of it merit careful consideration: one, that the maxim is selfish and immoral; and two, that it goes against the natural tendency to try to save others in dire need. In this paper, I will explain the concept of tsunami-tendenko and then respond to these criticisms. Such ethical analysis is essential for dispelling confusion and doubts about evacuation policies in a disaster. (shrink)

Suppose that you have deeply personal information that you do not want to share. Further suppose that this information could help others, perhaps even saving their lives. Should you reveal the information or keep it secret? With the increasing prevalence of genetic testing, more and more people are finding themselves in this situation. Although a patient's genetic results are potentially relevant to all her biological family members, her first‐degree relatives—parents, children, and full siblings—are most likely to be affected. This is (...) especially true for genetic mutations—like those in the BRCA1 and BRCA2 genes—that are associated with a dramatically increased risk of disease. Fortunately, people are usually willing to share results with their at‐risk relatives. Occasionally, however, a patient refuses to disclose her findings to anyone outside her clinical team. Ethicists have written little on patients’ moral duties to their at‐risk relatives. Moreover, the few accounts that have been advanced are problematic. Some unnecessarily expose patients’ genetic information to relatives who are unlikely to benefit from it, and others fail to ensure that patients’ most vulnerable relatives are informed of their genetic risks. Patients’ duty to warn can be defended in a way that avoids these problems. I argue that the duty to share one's genetic results is grounded in the principle of rescue—the idea that one ought to prevent, reduce, or mitigate the risk of harm to another person when the expected harm is serious and the cost or risk to oneself is sufficiently moderate. When these two criteria are satisfied, a patient will most likely have a duty to warn. (shrink)

Is there a rational and ethical basis for efforts to rescue individuals in dire straits? When does rescue have ethical support, and when does it reflect an irrational impulse? This paper defines a Rule of Rescue and shows its intuitive appeal. It then proceeds to argue that this rule lacks support from standard principles of justice and from ethical principles more broadly, and should be rejected in many situations. I distinguish between agent-relative and agent-neutral reasons, and argue that the Rule (...) of Rescue qualifies only in a narrow range of cases where agent-relative considerations apply. I conclude that it would be wise to set aside the Rule of Rescue in many cases, especially those involving public policies, where it has only weak normative justification. The broader implications of this analysis are noted. (shrink)

The prospect of rescuing a person in immediate peril seems at first glance to be an unqualified good. Take, for example, the events of April 15, 2013, at the 117th Boston Marathon. Two consecutive...

Fair resource allocation in humanitarian medicine is gaining in importance and complexity, but remains insufficiently explored. It raises specific issues regarding non-ideal fairness, global solidarity, legitimacy in non-governmental institutions and conflicts of interest. All would benefit from further exploration. We propose that some headway could be made by adapting existing frameworks of procedural fairness for use in humanitarian organizations. Despite the difficulties in applying it to humanitarian medicine, it is possible to partly adapt Daniels and Sabin's ‘Accountability for reasonableness’ to (...) this context. This would require: (1) inclusion of internally explicit decisions and rationales; (2) publicity to donors, local staff, community leaders and governments, as well as frank answers to any beneficiary—or potential beneficiary—who asked for clarification of decisions and their rationale; (3) a consistent reasoning strategy to weigh conflicting views of equity in specific situations; (4) advocacy within the organization as a mechanism for revision and appeals; and (5) internal regulation according to publicly accessible mechanisms. Organizations could generate a common corpus of allocation decisions from which to draw in future similar cases. Importantly, the complexity of these challenges should encourage, rather than hinder, broader discussion on ethical aspects of resource allocation in humanitarian medicine. CiteULike Connotea Del.icio.us What's this? (shrink)

The rule of rescue describes the powerful human proclivity to rescue identified endangered lives, regardless of cost or risk. Deciding whether or not to perform a decompressive craniectomy as a life-saving or ‘rescue’ procedure for a young person with a severe traumatic brain injury provides a good example of the ethical tensions that occur in these situations. Unfortunately, there comes a point when the primary brain injury is so severe that if the patient survives they are likely to remain severely (...) disabled and fully dependent. The health resource implications of this outcome are significant. By using a web-based outcome prediction model this study compares the long-term outcome and designation of two groups of patients. One group had a very severe injury as adjudged by the model and the other group a less severe injury. At 18 month follow-up there were significant differences in outcome and healthcare requirements. This raises important ethical issues when considering life-saving but non-restorative surgical intervention. The discussion about realistic outcome cannot be dichotomised into simply life or death so that the outcome for the patient must enter the equation. As in other ‘rescue situations’, the utility of the procedure cannot be rationalised on a mere cost–benefit analysis. A compromise has to be reached to determine at what point either the likely outcome would be unacceptable to the person on whom the procedure is being performed or the social utility gained from the rule of rescue intervention fails to justify the utilitarian value and justice of equitable resource allocation. (shrink)

Luck egalitarianism has come under a lot of criticism for its apparent harshness towards negligent victims of voluntary actions (the harshness objection) and its inability to respond to morally-acceptable voluntary acts that lead to disadvantage (the discrimination objection). This paper surveys a series of responses in the luck egalitarian literature, showing that for the most part each one is unable to respond, on its own, to the crux of the objections. These responses often face a dilemma: Either they must bite (...) the bullet on the objections to retain their luck egalitarian commitments, or they must propose a reply to the objection that diverges from their core luck egalitarian principles. In this paper, I advance a preliminary framework for grounding luck egalitarian theories of justice based upon a two-level model and what I shall call the Fact of Inherent Normativity. Two-level luck egalitarianism makes fundamental rights and basic needs de facto insensitive to responsibility at the first level, while retaining the scope for responsibility for the distribution of second-level goods. The account remains distinctly luck egalitarian, while leaving scope for the consideration of rights, respect, and a host of other morally relevant considerations within the luck egalitarian framework. Luck egalitarianism, properly understood as a two-level theory, can successfully respond to objections against its harshness and propensity to discriminate. (shrink)

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? That question is the focus of this essay. Put another way: relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally ill have? (...) On the one hand, we might see the terminally ill as being among the “medically least well off” and therefore deserving very high priority. On the other hand, we might see them as squandering vast medical resources for marginal medical benefits, thereby denying needed resources to others who would benefit much more. We begin the essay by making a number of morally relevant distinctions with regard to the category of “being terminally ill.” We note, given contemporary medicine, that individuals may be terminally ill several times in the course of a life. Not all such circumstances make equal just claims to needed health care. We also note that our conceptions of health care justice are ultimately incapable of making very fine-grained, morally justified rationing judgments in complex medical circumstances. We conclude that we must finally rely upon fair processes of rational democratic deliberation to articulate such judgments for our own future, possibly terminally ill selves, thereby undercutting the rhetoric of “death panels.”. (shrink)

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? This is the question that will be the focus of this essay. Another way of asking our question would be the following: Relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought (...) the health care needs of persons who are terminally ill have? Should any of the health care needs of the terminally ill be assigned very low priority? Or should all their health care needs be assigned the highest priority? If we reflect a bit, we will find ourselves greatly internally conflicted. On the one hand, the “caring” side of our moral self might see terminally ill individuals as being among the “medically least well off,” and therefore, deserving virtually any medical resources that will yield any degree of good for them. (shrink)

Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, crowdfunding was used to finance experimental nucleoside therapy. Although this treatment was not provided in the end, we will argue that the success of the Gard family’s crowdfunding campaign reveals a number of potential ethical concerns. First, this case shows that crowdfunding can change the way in which communal healthcare resources (...) are allocated. Second, within the UK’s National Health Service, healthcare is ostensibly not a market resource; thus, permitting crowdfunding introduces market norms that could commodify healthcare. Third, pressures inherent to receiving funds from external parties may threaten the ability of patients-cum-recipients to voluntarily consent to treatment. We conclude that while crowdfunding itself is not unethical, its use can have unforeseen consequences that may influence conceptions of healthcare and how it is delivered. (shrink)

The National Institute for Health and Care Excellence, the UK’s main healthcare priority-setting body, recently reaffirmed a longstanding claim that in recommending technologies to the National Health Service it cannot apply the ‘rule of rescue’. This paper explores this claim by identifying key characteristics of the rule and establishing to what extent these are also features of NICE’s approach to evaluating ultra-orphan drugs through its highly specialised technologies programme. It argues that although NICE in all likelihood does not act because (...) of the rule in prioritising these drugs, its actions in relation to HSTs are nevertheless in accordance with the rule and are not explained by the full articulation of any alternative set of rationales. That is, though NICE implies that its approach to HSTs is not motivated by the rule of rescue, it is not explicit about what else might justify this approach given NICE’s general concern with overall population need and value for money. As such, given NICE’s reliance on notions of procedural justice and its commitment to making the reasons for its priority-setting decisions public, the paper concludes that NICE’s claim to reject the rule is unhelpful and that NICE does not currently meet its own definition of a fair and transparent decision-maker. (shrink)

In response to the COVID-19 pandemic, states have funneled exceptional amounts of public funding into research and development of diagnostics, treatments and vaccines to help fight the virus. In th...

La pandemia de la COVID-19 ha levantado sospechas de edadismo y gerontofobia en diversas prácticas de racionamiento sanitario. La edad es un criterio de triaje controvertido. En este artículo se esclarece la relevancia ética de la edad dentro de los sistemas de triaje, analizando particularmente su rol dentro de los principios de equidad y de eficiencia. La equidad requiere dar más oportunidades a aquellos que han cumplido menos ciclos vitales. La eficiencia tiene en cuenta la edad de manera subrepticia al (...) tratar de maximizar los beneficios a corto plazo (salvar vidas) y a largo plazo (salvar años de vida). Finalmente, la edad no debe ser la última ratio de las decisiones de triaje, aunque es una variable a tener en cuenta debido a su presencia implícita en principios fundamentales de priorización. The COVID-19 pandemic has raised suspicions of ageism and gerontophobia in various health rationing practices. Age is a controversial triage criterion. This article clarifies the ethical relevance of age within triage systems, particularly its role within the principles of fairness and efficiency. Fairness requires giving more opportunities to those who have completed fewer life cycles. Efficiency takes age into account surreptitiously when trying to maximize short-term (saving lives) and long-term (saving years of life) benefits. Finally, age should not be the final rationale in triage decisions, although it is a variable to be taken into account because of its implicit presence in fundamental principles of prioritization. (shrink)