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)

Most of us have two strong intuitions (or sets of intuitions) in relation to fairness in health care systems that are funded by public money, whether through taxation or compulsory insurance. The first intuition is that such a system has to treat patients (and other users) fairly, equitably, impartially, justly and without discrimination. The second intuition is that doctors, nurses and other health care professionals are allowed to, and may even in some cases be obligated to give preference to the (...) interests of their particular patients or clients over the interests of other patients or clients of the system. These two intuitions are in potential conflict. One of the most obvious ways in which to ensure impartiality in a health care system is to require impartiality of all actors in the system, i.e. to give health care professionals a duty to treat everyone impartially and to deny them the ‘right’ to give their patients preferential treatment. And one of the possible side-effects of allowing individual health care professionals to give preference to ‘their clients’ is to create inequality in health care. This paper explores the conflict and proposes that it can be right to give preference to ‘your’ patients in certain circumstances. (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)

Social workers must often decide about priority at a case level, in a context of scarce resources. These decisions are disputable and controversial, which raises the question on what grounds are they made in practice. This article addresses that question through an empirical study of real-life case discussions in youth care in Flanders, the Dutch-speaking part of Belgium. Toulmin’s argumentation model is used to analyse the data. The study finds that most case discussions are processed in a rather technical manner. (...) But where there is active deliberation, key incidents show that the decision-makers undertake active and personal interpretation of the situation at hand, and that they also take a personal stance on the criteria for assigning priority. In other words, their practice can be understood as a hermeneutical activity. The article’s main conclusion is that the prioritisation process illustrates the moral-political core that is present in any social work decision-making practice. As this moral-political core seems to be hidden most of the time behind a technical-rational approach, questions remain whether the professionals involved are aware that it characterises their own judgements and whether insights into its nature are stimulated. (shrink)

The Scandinavian welfare states have public health care systems which have universal coverage and traditionally low influence of private insurance and private provision. Due to raises in costs, elaborate public control of health care, and a significant technological development in health care, priority setting came on the public agenda comparatively early in the Scandinavian countries. The development of health care priority setting has been partly homogeneous and appears to follow certain phases. This can be of broader interest as it may (...) shed light on alternative models and strategies in health care priority setting. Some general trends have been identified: from principles to procedures, from closed to open processes, and from experts to participation. Five general approaches have been recognized: The moral principles and values based approach, the moral principles and economic assessment approach, the procedural approach, the expert based practice defining approach, and the participatory practice defining approach. There are pros and cons with all of these approaches. For the time being the fifth approach appears attractive, but its lack of true participation and the lack of clear success criteria may pose significant challenges in the future. (shrink)

The medical profession is observing a rising number of calls to action considering the threat that climate change poses to global human health. Theory-led bioethical analyses of the scope and weight of physicians’ normative duty towards climate protection and its conflict with individual patient care are currently scarce. This article offers an analysis of the normative issues at stake by using Korsgaard’s neo-Kantian moral account of practical identities. We begin by showing the case of physicians’ duty to climate protection, before (...) we succinctly introduce Korsgaard’s account. We subsequently show how the duty to climate protection can follow from physicians’ identity of being a healthcare professional. We structure conflicts between individual patient care and climate protection, and show how a transformation in physicians’ professional ethos is possible and what mechanisms could be used for doing so. An important limit of our analysis is that we mainly address the level of individual physicians and their practical identities, leaving out important measures to respond to climate change at the mesolevels and macrolevels of healthcare institutions and systems, respectively. (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)

Although most theorists of healthcare rationing argue that rationing, including rationing that takes place in the physician–patient relationship is unavoidable, some health professionals strongly disagree. In a recent essay, Vegard Bruun Wyller argues that bedside rationing is immoral and thoroughly at odds with a sound view of the physician–patient relationship. We take Wyller to be an articulate exponent of the reluctance to participate in rationing found among some clinicians. Our essay attempts to refute the five crucial premises of his argument (...) yet build on his genuine insights. In our analysis, Wyller’s critique of bedside rationing is instructive both for harbouring some very common misconceptions that must be exposed and refuted, but also for offering important words of caution. In particular, bedside rationing must be performed in ways that do not harm the physician–patient relationship. Read irenically, Wyller’s critique is a reminder of what must not be lost in our painful endeavour to update the ethics of medicine to encompass the unavoidability of rationing. (shrink)

The General Medical Council (GMC) instructs doctors to act ‘reasonably’ in obtaining consent from patients. However, the GMC does not explain what it means to be reasonable: it is left to doctors to figure out the substance of this instruction. The GMC relies on the Supreme Court’s judgment in Montgomery v Lanarkshire Health Board; and it can be assumed that the judges’ idea of reasonability is adopted. The aim of this paper is to flesh out this idea of reasonability. This (...) idea is commonly personified as the audience that has to be satisfied by the doctor’s justification for offering, or withholding, certain treatments and related information. In case law, this audience shifted from a reasonable doctor to a ‘reasonable person in the patient’s position’; and Montgomery expands the audience to include ‘particular’ patients, too. Senior judges have clarified that the reasonable person is a normative ideal, and not a sociological construct; but they do not set out the characteristics of this ideal. John Rawls has conceived the reasonable person-ideal as one that pursues fair terms of co-operation with other members of society. An alternative ideal can be inferred from the feminist ethic of care. However, the reasonable patient from Montgomery does not align with either theoretical ideal; but, instead, is an entirely rational being. Such a conception conflicts with both real-life constraints on rationality and the doctor’s duty to care for the patient, and it challenges the practice of medicine. (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)

Denne artikkelen tar utgangspunkt i et skille mellom samfunnsstrukturer som avgrenser legers skjønnsmessige utfoldelse på den ene siden, og profesjonens tilrettelegging for kultiveringen av erkjennelsesmessige ferdigheter på den annen. Ved å videreføre H. Grimen og A. Molanders anvendelse av S.E. Toulmins modell for praktisk resonnering i en klinisk kontekst redegjør jeg for legeskjønnets multidimensjonale, epistemiske struktur. Gjennomgangen viser hvordan skjønnsanvendelse i legerollen kan analyseres i henhold til en fagteknisk, en distributiv og en relasjonell dimensjon. Mot denne bakgrunnen diskuterer jeg så (...) spenninger som oppstår i skjæringspunktet mellom strukturering og kultivering av skjønnets ulike dimensjoner. Diskusjonen tydeliggjør at den medisinske profesjonen ikke kan betraktes som en selvtilstrekkelig premissleverandør når det gjelder å sikre adekvat kultivering av medlemmenes skjønnsutøvelse i en klinisk kontekst. Ved å synliggjøre og vektlegge de relevante profesjonseksterne bidragene i profesjonens pågående selvregulering kan befolkningens berettigete tillit til profesjonen styrkes ytterligere.Nøkkelord: strukturelt skjønn, epistemisk skjønn, profesjon, selvregulering, tillitEnglish summary: In Between Structures of Society and Profession: On Delimitation, Cultivation and Premises for Adequately Exercising Judgment in the Role as PhysicianThe point of departure of this article is a distinction between societal structures that delimit the discretion of the physician on the one hand and the profession's arrangements for the cultivation of the physician's judgment on the other. By developing H. Grimen and A. Molander's application of S.E. Toulmin's model for practical reasoning in a clinical context, the multi-dimensional epistemic structure of the physician's judgment in terms of technical, distributive, and relational judgment is accounted for. Against this backdrop, tensions emerging in the intersection between delimitation and cultivation of professional judgment in its various dimensions are discussed. The discussion clarifies that the medical profession is not a self-sufficient provider when it comes to ensuring an adequate cultivation of its members' judgment in a clinical context. It is argued that by emphasising and implementing the relevant external contributions to the profession's ongoing self-regulation, the public's justified trust in the medical profession can be strengthened. (shrink)