In this article, we discuss how we used institutional ethnography (Institutional ethnography as practice, Rowman & Littlefield, Lanham, MD and 2006) to map out powerful ruling relations that organize nurses’ wound care work. In recent years, the growing number of people living with wounds that heal slowly or not at all has presented substantial challenges for those managing the demands on Canada's publicly insured health‐care system. In efforts to address this burden, Canadian health‐care administrators and policy‐makers rely on scientific evidence (...) about how wounds heal and what treatments are most effective. Advanced wound care exemplifies the growing authorization of particular forms of evidence that change the ways in which nurses come to know about and conduct their work. The focus of this paper's nursing inquiry is a critique of registered nurses’ wound work as it arises within the established uptake of scientific evidence. (shrink)

In the literature on the subject there is a trend towards understanding the idea of rationing in healthcare very broadly, to include any form of restriction in supply. It is suggested in this paper that there are good reasons to resist this move, since it would both render the concept redundant through being trivially true and displace an earlier, egalitarian one that retains great moral significance for the supply of healthcare. The nature and significance of the narrower, egalitarian conception is (...) set out, drawing particular attention to the fact that it marks a contrast with the idea of prioritising certain people or groups over others and to the fact that it is a form of rationing that is plausibly regarded as a morally desirable response to severe shortages. It is contrasted with the broad conception and arguments in favour of this latter are considered and rejected. (shrink)

Courts are increasingly obliged to adjudicate upon challenges to allocative decisions in healthcare, but their involvement continues to be regarded with unease, imperilling the legitimacy of the judicial role in this context. A central reason for this is that judges are perceived to lack sufficient expertise to determine allocative questions. This article critically appraises the claim of lack of judicial expertise through an examination of the various components of a limit-setting decision. It is argued that the inexpertise argument is weak (...) when compared with other rationales for judicial restraint, such as the procedural unsuitability and lack of constitutional competence of courts. (shrink)

The vision of global health with justice which Larry Gostin articulates in his book Global Health Law envisages a switch to ‘upstream’ priority-setting for expenditure on health, with a focus upon social determinants and a goal of redressing health inequalities. This article explores what is meant by this proposal and offers a critical evaluation of it. It is argued that difficulties arise in respect of the ethical and evidential bases for such an approach to the setting of priorities, while significant (...) challenges may also arise in the necessary modification of structures of governance. (shrink)

Für ökonomische Evaluationen medizinischer Leistungen steht ein etabliertes Methodenspektrum zur Verfügung. Ziel der Arbeit ist, anhand ausgewählter Aspekte herauszuarbeiten, inwieweit diese Methoden für den derzeit viel diskutierten Bereich der Personalisierten Medizin anwendbar sind bzw. welche Besonderheiten dabei auftreten und wie diese adressiert werden können. Für die vorliegende Arbeit wurde eine explorative Literaturrecherche durchgeführt. In Abgrenzung zur herkömmlichen Medizin kann je nach Blickwinkel die Personalisierte Medizin entweder hinsichtlich der physiologischen Unterschiede oder hinsichtlich der individuellen Präferenzen der Beteiligten betrachtet werden. Je nach (...) Betrachtungsweise ergeben sich unterschiedliche methodische Herausforderungen an gesundheitsökonomische Evaluationen. Verbesserte Ausrichtung der Versorgung an physiologischen Unterschieden stellt die Evaluation beispielsweise vor das Problem, dass aufgrund des oftmals kleinen Stichprobenumfangs häufig Evidenz zur Parametrisierung von Entscheidungsmodellen fehlt. Informationswertanalysen können Hinweise über den potenziellen Nutzen weiterer Forschung geben. Das Konzept des „Expected Value of Individualized Care“ bietet einen den Informationswertanalysen sehr ähnlichen Ansatz, um den potenziellen Wert eines Einbezugs individueller Präferenzen in die Versorgung zu quantifizieren. Welfarismus und Extra-Welfarismus bieten unterschiedliche Lösungsansätze, wie Nutzen Biomarker-basierter Information im Sinne von „Empowerment“ in Evaluationen einbezogen werden können. Generell sind die Methoden der gesundheitsökonomischen Evaluation auch auf den Bereich der Personalisierten Medizin anwendbar. Es stellen sich jedoch eine Reihe spezifischer Herausforderungen, zu deren Lösung weiterer Forschungsbedarf besteht. (shrink)

ZusammenfassungFür ökonomische Evaluationen medizinischer Leistungen steht ein etabliertes Methodenspektrum zur Verfügung. Ziel der Arbeit ist, anhand ausgewählter Aspekte herauszuarbeiten, inwieweit diese Methoden für den derzeit viel diskutierten Bereich der Personalisierten Medizin anwendbar sind bzw. welche Besonderheiten dabei auftreten und wie diese adressiert werden können. Für die vorliegende Arbeit wurde eine explorative Literaturrecherche durchgeführt. In Abgrenzung zur herkömmlichen Medizin kann je nach Blickwinkel die Personalisierte Medizin entweder hinsichtlich der physiologischen Unterschiede oder hinsichtlich der individuellen Präferenzen der Beteiligten betrachtet werden. Je nach (...) Betrachtungsweise ergeben sich unterschiedliche methodische Herausforderungen an gesundheitsökonomische Evaluationen. Verbesserte Ausrichtung der Versorgung an physiologischen Unterschieden stellt die Evaluation beispielsweise vor das Problem, dass aufgrund des oftmals kleinen Stichprobenumfangs häufig Evidenz zur Parametrisierung von Entscheidungsmodellen fehlt. Informationswertanalysen können Hinweise über den potenziellen Nutzen weiterer Forschung geben. Das Konzept des „Expected Value of Individualized Care“ bietet einen den Informationswertanalysen sehr ähnlichen Ansatz, um den potenziellen Wert eines Einbezugs individueller Präferenzen in die Versorgung zu quantifizieren. Welfarismus und Extra-Welfarismus bieten unterschiedliche Lösungsansätze, wie Nutzen Biomarker-basierter Information im Sinne von „Empowerment“ in Evaluationen einbezogen werden können. Generell sind die Methoden der gesundheitsökonomischen Evaluation auch auf den Bereich der Personalisierten Medizin anwendbar. Es stellen sich jedoch eine Reihe spezifischer Herausforderungen, zu deren Lösung weiterer Forschungsbedarf besteht. (shrink)

Driven by interests in workforce planning and patient safety, a growing body of literature has begun to identify the reality and the prevalence of missed nursing care, also specified as care left undone, rationed care or unfinished care. Empirical studies and conceptual considerations have focused on structural issues such as staffing, as well as on outcome issues – missed care/unfinished care. Philosophical and ethical aspects of unfinished care are largely unexplored. Thus, while internationally studies highlight instances of covert rationing/missed care/care (...) left undone – suggesting that nurses, in certain contexts, are actively engaged in rationing care – in terms of the nursing and nursing ethics literature, there appears to be a dearth of explicit decision-making frameworks within which to consider rationing of nursing care. In reality, the assumption of policy makers and health service managers is that nurses will continue to provide full care – despite reducing staffing levels and increased patient turnover, dependency and complexity of care. Often, it would appear that rationing/missed care/nursing care left undone is a direct response to overwhelming demands on the nursing resource in specific contexts. A discussion of resource allocation and rationing in nursing therefore seems timely. The aim of this discussion paper is to consider the ethical dimension of issues of resource allocation and rationing as they relate to nursing care and the distribution of the nursing resource. (shrink)

Health care organization is entering a new age. Focus is increasingly shifting from individual health care institutions to interorganizational collaboration and health care networks. Much hope is set on such networks which have been argued to improve economic efficiency and quality of care. However, this does not automatically mean they are always ethically justified. A relevant question that remains is what ethical obligations or duties one can ascribe to these networks especially because networks involve many risks. Due to their often (...) amorphous and complex structure, collective responsibility and accountability may increase while individual responsibility goes down. We argue that a business ethics approach to ethical obligations for health care networks, is problematic and we propose to opt for a patient perspective. Using the classic four principles of biomedical ethics it is possible to identify specific ethical duties. Based on the principle of justice, health care networks have an ethical duty to provide just and fair access for all patients and to be transparent to patients about how access is regulated. The principle of nonmaleficence implies an obligation to guarantee patient safety, whereas the principle of beneficence implies an obligation for health care networks to guarantee continuity of care in all its dimensions. Finally, the principle of autonomy is translated into a specific obligation to promote and respect patient choice. Networks that fail to meet any of these conditions are suspect and cannot be justified ethically. Faced with daunting challenges, the health care system is changing rapidly. Currently many hopes ride on integrated care and broad health care networks. Such networks are the topic of empirical debate, but more attention should be given to the ethical aspects. Health care networks raise new and pressing ethical issues and we are in need of a framework for assessing how and when such networks are justified. (shrink)

The aims of the paper are (i) to introduce a framework for reasoning about equity in health distribution before and after interventions, and (ii) to assess various Gini measures applied to healthy life expectancy against explicit normative concerns. Part 1 discusses different ways of measuring pure health inequality and suggests that a modified Gini measure could be used to measure inequity in health before and after treatment. Part 2 introduces a framework for reasoning about distributions of health. Part 3 discusses (...) three normative concerns that any acceptable measure of inequity should satisfy. Part 4 describes the standard Gini measure for measuring pure inequalities in healthy life expectancy. It also examines Wagstaff's Extended Gini measure of health inequity and discusses how it can be used to make priority weights to the worst off explicit. The final section expresses some programmatic worries and possible applications. It is argued that the impact of interventions should be evaluated both in terms of reduced inequity (as measured by the Extended Gini or the Extended Proportional Gini) and improved efficiency (measured by gains in average healthy life expectancy). Measurement of pure health inequity could supplement cost-effectiveness analysis as a basis for fair priority setting. (shrink)

This paper experimentally investigates the altruistic behavior of physicians and whether this behavior is affected by payment system and uncertainty in health outcome. Subjects in the experiment take on the role of physicians and decide on the provision of medical care for different types of patients, who are identical in all respects other than the degree to which a given level of medical treatment affects their health. We investigate physician altruism from the perspective of ethical principles, by categorizing physicians according (...) to how well their treatment decisions align with different principles for priority setting. The experiment shows that many physicians are altruistic toward their patients but also that the degree of altruism varies across patients with different medical needs. We find a strong effect of payment system that is overall unaffected by the introduction of risk and ambiguity in patients health outcomes. There is, however, substantial heterogeneity across individuals, in particular under the capitation payment system where physicians responses to the introduction of uncertainty in patient health are modulated by their own generic risk and ambiguity preferences. (shrink)

COVID-19 is reducing the ability to perform surgical procedures worldwide, giving rise to a multitude of ethical, practical and medical dilemmas. Adapting to crisis conditions requires a rethink of traditional best practices in surgical management, delving into an area of unknown risk profiles. Key challenging areas include cancelling elective operations, modifying procedures to adapt local services and updating the consenting process. We aim to provide an ethical rationale to support change in practice and guide future decision-making. Using the four principles (...) approach as a structure, Medline was searched for existing ethical frameworks aimed at resolving conflicting moral duties. Where insufficient data were available, best guidance was sought from educational institutions: National Health Service England and The Royal College of Surgeons. Multiple papers presenting high-quality, reasoned, ethical theory and practice guidance were collected. Using this as a basis to assess current practice, multiple requirements were generated to ensure preservation of ethical integrity when making management decisions. Careful consideration of ethical principles must guide production of local guidance ensuring consistent patient selection thus preserving equality as well as quality of clinical services. A critical issue is balancing the benefit of surgery against the unknown risk of developing COVID-19 and its associated complications. As such, the need for surgery must be sufficiently pressing to proceed with conventional or non-conventional operative management; otherwise, delaying intervention is justified. For delayed operations, it is our duty to quantify the long-term impact on patients’ outcome within the constraints of pandemic management and its long-term outlook. (shrink)

Alternative allocations of a fixed bundle of healthcare resources often involve significantly different indirect, non-health effects. The question arises whether these effects must figure in accounts of the conditions under which a distribution of healthcare resources is morally justifiable. In this article we defend a Scanlonian, affirmative answer to this question: healthcare resource managers should sometimes select an allocation which has worse direct, health-related effects but better indirect, nonhealth effects; they should do this when the interests served by such a (...) policy are more urgent than the healthcare interests better served by an alternative allocation. We note that there is a prima facie case for the claim that such benefits (and costs) are relevant—i.e. they are real benefits, and in other contexts our decisions can permissibly be guided by them. We then proceed to rebut three lines of argument that might be thought to defeat this prima facie case: they appeal to fairness, the Kantian Formula of Humanity as an End in Itself, and the equal moral worth of persons, respectively. (shrink)

Evidence-based medicine has always required integration of patient values with ‘best’ clinical evidence. It is widely recognized that scientific practices and discoveries, including those of EBM, are value-laden. But to date, the science of EBM has focused primarily on methods for reducing bias in the evidence, while the role of values in the different aspects of the EBM process has been almost completely ignored.

The prioritisation of scarce resources has a particular urgency within the context of the COVID‐19 pandemic crisis. This paper sets out a hypothetical case of Patient X (who is a nurse) and Patient Y (who is a non‐health care worker). They are both in need of a ventilator due to COVID‐19 with the same clinical situation and expected outcomes. However, there is only one ventilator available. In addressing the question of who should get priority, the proposal is made that the (...) answer may lie in how the pandemic is metaphorically described using military terms. If nursing is understood to take place at the ‘frontline’ in the ‘battle’ against COVID‐19, a principle of military medical ethics—namely the principle of salvage—can offer guidance on how to prioritise access to a life‐saving resource in such a situation. This principle of salvage purports a moral direction to return wounded soldiers back to duty on the battlefield. Applying this principle to the hypothetical case, this paper proposes that Patient X (who is a nurse) should get priority of access to the ventilator so that he/she can return to the ‘frontline’ in the fight against COVID‐19. (shrink)

In this article, I describe how gender bias can affect the design, testing, clinical trials, regulatory approval, and clinical use of implantable devices. I argue that bad outcomes experienced by women patients are a cumulative consequence of small biases and inattention at various points of the design, testing, and regulatory process. However, specific instances of inattention and bias can be difficult to identify, and risks are difficult to predict. This means that even if systematic gender bias in implant design is (...) an ethical issue, it is one with no clearly blameworthy player. From a practical perspective, there is no single obvious point at which to intervene. Philosophers working in other areas have explored structurally similar moral problems—sometimes referred to as “moral aggregation problems”—such as the type of environmental harm caused by small actions of many players. I describe key features of these type of problems and strategies to address them. I then draw on these to suggest an approach to gender bias in medical implant design and use. (shrink)

The American Journal of Bioethics, Volume 11, Issue 12, Page 46-47, December 2011.

Technology corporations and the emerging digital health market are exerting increasing influence over the public healthcare agendas forming around the application of mobile medical devices. By promising quick and cost-effective technological solutions to complex healthcare problems, they are attracting the interest of funders, researchers, and policymakers. They are also shaping the public facing discourse, advancing an overwhelmingly positive narrative predicting the benefits of wearable medical devices to include personalised medicine, improved efficiency and quality of care, the empowering of under-resourced communities, (...) and delivery of health services previously unavailable to the citizens of developing countries. Typically techno-optimist in their description, the key barriers to this impending inflection point in healthcare are identified as technical issues such as short battery life and a lack of data protection. However, this tech innovation narrative is consistent with problematic ethical, social, and political assumptions that have practical and normative effects, and risk, one, undermining the real clinical potential of wearable devices and, two, designing social inequality and injustice into our mobile health interventions in global healthcare. I argue that the foundational assumptions dealing with the just distribution of healthcare ‘goods’, the individual as part of society, and the political framing of future healthcare policy devalue equity and despite what they promise cannot meet the distinctive needs of individuals and groups that do not conform to a standardised concept of care-receiver. (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)

This article addresses the prioritization questions that arise when people attempt to institutionalize reasonable ethical principles and create guidelines for microlevel decisions. I propose that this instantiates an incommensurability problem, and suggest two different kinds of practical solutions for dealing with this issue.

This essay considers whether permitting the cost-effectiveness of healthcare to govern its allocation is ethically objectionable on the grounds that it fails to give sufficient weight to the severity of people’s health states. After documenting the popular sentiment that appears to support this criticism, the essay considers how to implement prioritising severity, focusing on Erik Nord’s work. The remainder of the essay scrutinises the ethical arguments supporting policies prioritising severity and challenges those who would prioritise severity to define a notion (...) of severity whose prioritisation they can defend. (shrink)

abstract The argument that scarce health care resources should be distributed so that patients in ‘need’ are given priority for treatment is rarely contested. In this paper, we argue that if need is to play a significant role in distributive decisions it is crucial that what is meant by need can be precisely articulated. Following a discussion of the general features of health care need, we propose three principal interpretations of need, each of which focuses on separate intuitions. Although this (...) account may not be a completely exhaustive reflection of what people mean when they refer to need, the three interpretations provide a starting‐point for further debate of what the concept means in its specific application. We discuss combined interpretations, the meaning of grading needs, and compare needs‐based priority setting to social welfare maximisation. (shrink)

As Alfandre and colleagues describe in “Between Usual and Crisis Phases of a Public Health Emergency: The Mediating Role of Contingency Measures”, efforts to maintain standards of care durin...

In healthcare, a tension sometimes arises between the injunction to do as much good as possible with scarce resources and the injunction to rescue identifiable individuals in immediate peril, regardless of cost (the “Rule of Rescue”). This tension can generate serious ethical and political difficulties for public policy makers faced with making explicit decisions about the public funding of controversial health technologies, such as costly new cancer drugs. In this paper we explore the appropriate role of the Rule of Rescue (...) in public resource allocation decisions by health technology funding advisory bodies such as the National Institute for Health and Clinical Excellence. We consider practical approaches to operationalising the Rule of Rescue from Australia and the UK before examining the relevance of individual moral imperatives to public policy making. We conclude that that whilst public policy makers in a humane society should facilitate exceptional departures from a cost effectiveness norm in clinical decisions about identified individuals, it is not so obvious that they should, as a matter of national public policy, exempt any one group of unidentified individuals within society from the rules of opportunity cost at the expense of all others. (shrink)

Should there be a female age limit on public funding for assisted reproductive technology (ART)? The question bears significant economic and sociopolitical implications and has been contentious in many countries. We conceptualise the question as one of justice in resource allocation, using three much-debated substantive principles of justice—the capacity to benefit, personal responsibility, and need—to structure and then explore a complex of arguments. Capacity-to-benefit arguments are not decisive: There are no clear cost-effectiveness grounds to restrict funding to those older women (...) who still bear some capacity to benefit from ART. Personal responsibility arguments are challenged by structural determinants of delayed motherhood. Nor are need arguments decisive: They can speak either for or against a female age limit, depending on the conception of need used. We demonstrate how these principles can differ not only in content but also in the relative importance they are accorded by governments. Wide variation in ART public funding policy might be better understood in this light. We conclude with some inter-country comparison. New Zealand and Swedish policies are uncommonly transparent and thus demonstrate particularly well how the arguments we explore have been put into practice. (shrink)

We clarify options for conceptualizing equity, or what we refer to as justice, in resource allocation. We do this by systematically differentiating, expounding, and then illustrating eight different substantive principles of justice. In doing this, we compare different meanings that can be attributed to “need” and “the capacity to benefit”. Our comparison is sharpened by two analytical tools. First, quantification helps to clarify the divergent consequences of allocations commended by competing principles. Second, a diagrammatic approach developed by economists Culyer and (...) Wagstaff offers a visual and conceptual aid. Of the eight principles we illustrate, only two treat as relevant both a person’s initial health state and a person’s CTB per resource unit expended: allocate resources so as to most closely equalize final health states and allocate resources so as to equally restore health states to population norms. These allocative principles ought to be preferred to the alternatives if one deems relevant both a person’s initial health state and a person’s CTB per resource unit expended. Finally, we examine some possibilities for conceptualizing benefits as relative to how badly off someone is, extending Parfit’s thought on Prioritarianism. Questions arise as to how much intervention effects accruing to the worse off count for more and how this changes with improving health. We explicate some recent efforts to answer these questions, including in Dutch and British government circles. These efforts can be viewed as efforts to operationalize need as an allocative principle. Each effort seeks to maximize in the aggregate quanta of effect that are differentially valued in favor of the worst off. In this respect, each effort constitutes one type of Prioritarianism, which Parfit failed to differentiate from other types. (shrink)

The coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving (...) the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work. (shrink)

Combatting chronic, lifestyle-related disease has become a healthcare priority in the developed world. The role personal responsibility should play in healthcare provision has growing pertinence given the growing significance of individual lifestyle choices for health. Media reporting focussing on the ‘bad behaviour’ of individuals suffering lifestyle-related disease, and policies aimed at encouraging ‘responsibilisation’ in healthcare highlight the importance of understanding the scope of responsibility ascriptions in this context. Research into the social determinants of health and psychological mechanisms of health behaviour (...) could undermine some commonly held and tacit assumptions about the moral responsibility of agents for the sorts of lifestyles they adopt. I use Philip Petit's conception of freedom as ‘fitness to be held responsible’ to consider the significance of some of this evidence for assessing the moral responsibility of agents. I propose that, in some cases, factors outside the agent's control may influence behaviour in such a way as to undermine her freedom along the three dimensions described by Pettit: freedom of action; a sense of identification with one's actions; and whether one's social position renders one vulnerable to pressure from more powerful others. (shrink)

The medical profession is steeped in traditions that guide its practice. These traditions were developed to preserve the well-being of patients. Transformations in science, technology, and society, while maintaining a self-governance structure that drives the goal of care provision, have remained hallmarks of the profession. The purpose of this paper is to examine ethical challenges in health care as it relates to Big Data, Accountable Care Organizations, and Health Care Predictive Analytics using the principles of biomedical ethics laid out by (...) Beauchamp and Childress. Among these are the use of Electronic Health Records within stipulations of the Health Insurance Portability and Accountability Act. Clinicians are well-positioned to impact health policy development to address ethical issues associated with the use of Big Data, Accountable Care, and Health Care Predictive Analytics as we work to transform the doctor–patient relationship towards improving population health outcomes and creating a healthier society. (shrink)

Priority setting in health care is ubiquitous and health authorities are increasingly recognising the need for priority setting guidelines to ensure efficient, fair, and equitable resource allocation. While cost-effectiveness concerns seem to dominate many policies, the tension between utilitarian and deontological concerns is salient to many, and various severity criteria appear to fill this gap. Severity, then, must be subjected to rigorous ethical and philosophical analysis. Here we first give a brief history of the path to today’s severity criteria in (...) Norway and Sweden. The Scandinavian perspective on severity might be conducive to the international discussion, given its long-standing use as a priority setting criterion, despite having reached rather different conclusions so far. We then argue that severity can be viewed as a multidimensional concept, drawing on accounts of need, urgency, fairness, duty to save lives, and human dignity. Such concerns will often be relative to local mores, and the weighting placed on the various dimensions cannot be expected to be fixed. Thirdly, we present what we think are the most pertinent questions to answer about severity in order to facilitate decision making in the coming years of increased scarcity, and to further the understanding of underlying assumptions and values that go into these decisions. We conclude that severity is poorly understood, and that the topic needs substantial further inquiry; thus we hope this article may set a challenging and important research agenda. (shrink)

The principle of need—the idea that resources should be allocated according to need—is often invoked in priority setting in the health care sector. In this article, I argue that a reasonable principle of need must be indeterminate, and examine three different ways that this can be dealt with: appendicizing the principle with further principles, imposing determinacy, or empowering decision makers. I argue that need must be conceptualized as a composite property composed of at least two factors: health shortfall and capacity (...) to benefit. When one examines how the different factors relate to each other, one discovers that this is sometimes indeterminate. I illustrate this indeterminacy in this article by applying the small improvement argument. If the relation between the factors are always determinate, the comparative relation changes by a small adjustment. Yet, if two needs are dissimilar but of seemingly equal magnitude, the comparative relation does not change by a small adjustment of one of the factors. I then outline arguments in favor of each of the three strategies for dealing with indeterminacy, but also point out that all strategies have significant shortcomings. More research is needed concerning how to deal with this indeterminacy, and the most promising path seems to be to scrutinize the position of the principle of need among a plurality of relevant principles for priority setting in the health care sector. (shrink)

La cobertura universal de salud está en el centro de la acción actual para fortalecer los sistemas de salud y mejorar el nivel y la distribución de la salud y los servicios de salud. Este documento es el informe fi nal del Grupo Consultivo de la OMS sobre la Equidad y Cobertura Universal de Salud. Aquí se abordan los temas clave de la justicia (fairness) y la equidad que surgen en el camino hacia la cobertura universal de salud. Por lo (...) tanto, el informe es pertinente para cada agente que infl uye en ese camino y en particular para los gobiernos, ya que se encargan de supervisar y guiar el progreso hacia la cobertura universal de salud. (shrink)

Background: Transgender health care is a subject of much debate among clinicians, political commentators, and policy-makers. While the World Professional Association of Transgender Health (WPATH) Standards of Care (SOC) establish clinical standards, these standards contain implied ethics but lack explicit focused discussion of ethical considerations in providing care. An ethics chapter in the SOC would enhance clinical guidelines. Aims: We aim to provide a valuable guide for healthcare professionals, and anyone interested in the ethical aspects of clinical support for gender (...) diverse and transgender people of all ages. Recognizing that the WPATH is a global association, we address broad challenges. We offer a reflection on general ethical principles, providing conceptual tools for healthcare providers, patients, and families to navigate the specific challenges they might encounter in transgender health care, in line with WPATH’s worldwide mission and scope. Method: This article employs a descriptive analysis, and our framework of reference is the four principles of biomedical ethics: respect for autonomy, beneficence, nonmaleficence, and justice. Results: The article presents a discussion on the four ethical principles as applied to transgender health care. We address issues such as respect for patient autonomy in decision-making, the role of beneficence and nonmaleficence in clinical interventions, and the importance of justice in equitable treatment and access to care. Some of the ethical concerns we address in this article pertain to the current sociopolitical climate, where there has been increasing legal interference, internationally, for transgender and nonbinary people, particularly youth, seeking medical care. Discussion: We highlight the interplay between ethical principles and clinical practice, underscoring the need for ethical guidance in addressing the diverse challenges faced by healthcare providers and patients in transgender health care. We advocate for continuous refinement of ethical thinking to ensure that transgender health care is not only medically effective but also ethically sound. (shrink)