The concept of legitimacy is often used and emphasized in the context of setting limits in health care, but rarely described is what is actually meant by its use. Moreover, it is seldom explicitly stated how health-care workers can contribute to the matter, nor what weight should be apportioned to their viewpoints. Instead the discussion has focused on whether they should take on the role of the patients’ advocate or that of gatekeeper to the society’s resources. In this article, we (...) shed light on the role of health-care workers in limit setting and how their conferred legitimacy may support subordinators’ (i.e. citizens’) conferred legitimacy. We argue that health-care workers have an important role to play as both moral and political agents in limit setting, and delineate normative conditions that justify and facilitate health-care workers in conferring legitimacy on this kind of decision. Their role and potential impact on political limit setting does not—theoretically—affect the idea of democratic legitimacy negatively. Rather, as we suggest, by designing for limit-setting policymaking accordingly, health-care workers, as well as citizens, are more justified in conferring democratic legitimacy to health-care limit-setting decisions than if these concerns were not addressed. (shrink)

Should we let personal responsibility for health-related behavior influence the allocation of healthcare resources? In this paper, we clarify what it means to be responsible for an action. We rely on a crucial conceptual distinction between being responsible and holding someone responsible, and show that even though we might be considered responsible and blameworthy for our health-related actions, there could still be well-justified reasons for not considering it reasonable to hold us responsible by giving us lower priority. We transform these (...) philosophical considerations into analytical use first by assessing the general features of health-related actions and the corresponding healthcare needs. Then, we identify clusters of structural features that even adversely affected people cannot reasonably deny constitute actions for which they should be held responsible. We summarize the results in an analytical framework that can be used by decision-makers when considering personal responsibility for health as a criterion for setting priorities. (shrink)

Decisions about allocation of limited healthcare resources are frequently controversial. These decisions are usually based on careful analysis of medical, scientific and health economic evidence. Yet, decisions are also necessarily based on value judgements. There may be differing views among health professionals about how to allocate resources or how to evaluate existing evidence. In specific cases, professionals may have strong personal views (contrary to professional or societal norms) that treatment should or should not be provided. Could these disagreements rise to (...) the level of a conscientious objection? If so, should conscientious objections to existing allocation decisions be accommodated? In the first part of this paper, I assess whether resource allocation could be a matter of conscience. I analyse conceptual and normative models of conscientious objection and argue that rationing could be a matter for conscience. I distinguish between negative and positive forms: conscientious non-treatment and conscientious treatment. In the second part of the paper, I identify distinctive challenges for conscientious objections to resource allocation. Such objections are almost always inappropriate. (shrink)

Background Rationing and allocation decisions at the clinical level – bedside rationing – entail complex dilemmas that clinicians and managers often find difficult to handle. There is a lack of mechanisms and aids for promoting fair decisions, especially in hard cases. Reports indicate that clinical ethics committees sometimes handle cases that involve bedside rationing dilemmas. Can CECs have a legitimate role to play in bedside rationing? Main text Aided by two frameworks for legitimate priority setting, we discuss how CECs can (...) contribute to enhanced epistemic, procedural and political legitimacy in bedside rationing decisions. Drawing on previous work we present brief case vignettes and outline several potential roles that CECs may play, and then discuss whether these might contribute to rationing decisions becoming legitimate. In the process, key prerequisites for such legitimacy are identified. Legitimacy places demands on aspects such as the CEC’s deliberation process, the involvement of stakeholders, transparency of process, the opportunity to appeal decisions, and the competence of CEC members. On these conditions, CECs can help strengthen the legitimacy of some of the rationing decisions clinicians and managers have to make. Conclusions On specified conditions, CECs can have a well-justified advisory role to play in order to enhance the legitimacy of bedside rationing decisions. (shrink)

Over many years, different theories have been developed to guide the social practices and policies of institutions so that they demonstrate equal concern and respect for all, and satisfy the requirements of justice. Although the normative principles described in a theory may support just institutions, whether this results in just outcomes will depend on how the decisions that implement the principles are made and actioned. As a societal institution charged with caring for people, ensuring just outcomes is a distinct concern (...) in healthcare. Relationships within this institution are constitutive of human flourishing and are also important to justice. Yet, it is not possible to create, maintain or evaluate interpersonal relationships in the same manner as institutions because rather than being universal and impartial, they are particular and partial. Consequently, the link between theories of justice that guide decision-making in relation to structures or institutions, and the relationships that influence those with a proximate effect on individuals, is not explicit. To address this gap, this article argues that a focus on human flourishing provides a nexus between the decision-making for just institutions and just outcomes for individuals. (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.

In most socialised health systems there are formal processes that manage resource scarcity and determine the allocation of funds to health services in accordance with their priority. In this analysis, part of a larger qualitative study examining the ethical issues entailed in doctors’ participation as technical experts in priority setting, we describe the values and ethical commitments of doctors who engage in priority setting and make an empirically derived contribution towards the identification of an ethical framework for doctors’ macroallocation work. (...) We conducted semi-structured interviews with 20 doctors, each of whom participated in macroallocation at one or more levels of the Australian health system. Our sampling, data-collection, and analysis strategies were closely modelled on grounded moral analysis, an iterative empirical bioethics methodology that employs contemporaneous interchange between the ethical and empirical to support normative claims grounded in practice. The values held in common by the doctors in our sample related to the domains of personal ethics, justice, and practices of argumentation. Applying the principles of grounded moral analysis, we identified that our participants’ ideas of the good in macroallocation and their normative insights into the practice were strongly aligned with the three levels of Paul Ricoeur’s ‘little ethics’: ‘aiming at the “good life” lived with and for others in just institutions’. Our findings suggest new ways of understanding how doctors’ values might have procedural and substantive impacts on macroallocation, and challenge the prevailing assumption that doctors in this milieu are motivated primarily by deontological considerations. Our empirical bioethics approach enabled us to identify an ethical framework for medical work in macroallocation that was grounded in the values and ethical intuitions of doctors engaged in actions of distributive justice. The concordance between Ricoeur’s ‘little ethics’ and macroallocation practitioners’ experiences, and its embrace of mutuality, suggest that it has the potential to guide practice, support ethical reflection, and harmonise deliberative practices amongst actors in macroallocation generally. (shrink)

Public health ethics is a relatively new academic field. Crucially, it is distinguished from traditional medical ethics by its focus on populations rather than individuals. Still, the ethics of public health cannot be perceived completely detached from the ethics of individuals, as populations are made up of individuals. One issue that clearly falls within the intersection of a population- and an individual based perspective on ethics is resource allocation. Resource allocation takes place at various stages within the organisation of healthcare, (...) i.e. at the micro-, meso- and macro level [3]. Resources are almost always limited, with the consequence that some healthcare is prioritised while other care is rationed. In this manner, resource allocation creates winners and losers; those who get the best care available, those who do not receive the best care and those who do not receive care at all. It seems prudent to assume that any adequate public health ethics involved in population-based decision-making will have to address all ethical aspects of resource allocation, all the way from the macrolevel policy-making process to the micro-level implementation where it affects specific and identifiable individuals. More specifically, such an ethics must be able to deal with the ethical tensions arising between population-based concerns framing the policy design process, and individual concerns in the realisation of the resource allocations. In the following, I will identify an inherent ethical tension involved in ‘legitimate resource allocation’, which is related to the challenge of meeting the ethical requirements from a population- and an individual based perspective at the same time. (shrink)

The overall aim of this article is to discuss the organization of limit setting in healthcare in terms of legitimacy. We argue there is a strong ethical demand that such processes should be arranged to provide adversely affected people well-justified reasons to confer legitimacy to the processes despite favouring a different decision-making outcome. Two increasingly popular approaches, Accountability for Reasonableness (A4R) and Multi-Criteria Decision Analysis (MCDA), can both be applied to support legitimate decision-making processes. However, the role played by ‘fair-minded (...) people’ in the A4R framework can be shown to undermine an adequate conceptualization of legitimacy according to the ethical demand. We discuss and specify conditions enabling A4R to meet this ethical demand when being implemented in a real-world setting without having to renounce the aim of striving for ‘reasonableness’ and impartiality. The methodological approach MCDA describes how to arrange for transparent resource allocation. This approach does not encompass any normative guidance on how to shape limit settings in terms of ‘reasonableness’; it basically promotes ‘rational’ decisions. We discuss how this practical methodology can be integrated with the theoretical A4R framework to meet the ethical demand while at the same time promoting politically required impartiality of healthcare limit setting. (shrink)