Do not despair about severity-yet.

In a recent extended essay, philosopher Daniel Hausman goes a long way towards dismissing severity as a morally relevant attribute in the context of priority setting in healthcare. In this response, we argue that although Hausman certainly points to real problems with how severity is often interpreted and operationalised within the priority setting context, the conclusion that severity does not contain plausible ethical content is too hasty. Rather than abandonment, our proposal is to take severity seriously by carefully mapping the possibly multiple underlying accounts to well-established ethical theories, in a way that is both morally defensible and aligned with the term's colloquial uses.

Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda.

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.

The meaning of severity - do citizens views correspond to a severity framework based on ethical principles for priority setting?

The importance for governments of establishing ethical principles and criteria for priority setting in line with social values, has been emphasised. The risk of such criteria not being operationalised and instead replaced by de-contextualised priority-setting tools, has been noted. The aim of this article was to compare whether citizens views are in line with how a criterion derived from parliamentary-decided ethical principles have been interpreted into a framework for evaluating severity levels, in resource allocation situations in Sweden. Interviews were conducted with 15 citizens and analysed by directed content analysis. The results showed that the multi-factorial aspects that participants considered as relevant for evaluating severity, were similar to those used by professionals in the Severity Framework, but added some refinements on what to consider when taking these aspects into account. Findings of similarities, such as in our study, could have the potential to strengthen the internal legitimacy among professionals, to use such a priority-setting tool, and enable politicians to communicate the justifiability of how severity is decided. The study also disclosed new aspects regarding severity, of which some are ethically disputed, implying that our results also reveal the need for ongoing ethical discussions in publicly-funded healthcare systems.

It takes a giraffe to see the big picture - citizens' view on decision makers in health care rationing.

Previous studies show that citizens usually prefer physicians as decision makers for rationing in health care, while politicians are downgraded. The findings are far from clear-cut due to methodological differences, and as the results are context sensitive they cannot easily be transferred between countries. Drawing on methodological experiences from previous research, this paper aims to identify and describe different ways Swedish citizens understand and experience decision makers for rationing in health care, exclusively on the programme level. We intend to address several challenges that arise when studying citizens' views on rationing by (a) using a method that allows for reflection, (b) using the respondents' nomination of decision makers, and (c) clearly identifying the rationing level. We used phenomenography, a qualitative method for studying variations and changes in perceiving phenomena. Open-ended interviews were conducted with 14 Swedish citizens selected by standard criteria (e.g. age) and by their attitude towards rationing. The main finding was that respondents viewed politicians as more legitimate decision makers in contrast to the results in most other studies. Interestingly, physicians, politicians, and citizens were all associated with some kind of risk related to self-interest in relation to rationing. A collaborative solution for decision making was preferred where the views of different actors were considered important. The fact that politicians were seen as appropriate decision makers could be explained by several factors: the respondents' new insights about necessary trade-offs at the programme level, awareness of the importance of an overview of different health care needs, awareness about self-interest among different categories of decision-makers, including physicians, and the national context of long-term political accountability for health care in Sweden. This study points to the importance of being aware of contextual and methodological issues in relation to research on how citizens experience arrangements for rationing in health care.

To accept, or not to accept, that is the question: citizen reactions to rationing.

BACKGROUND: The publicly financed health service in Sweden has come under increasing pressure, forcing policy makers to consider restrictions. OBJECTIVE: To describe different perceptions of rationing, in particular, what citizens themselves believe influences their acceptance of having to stand aside for others in a public health service. DESIGN: Qualitative interviews, analysed by phenomenography, describing perceptions by different categories. SETTING AND PARTICIPANTS: Purposeful sample of 14 Swedish citizens, based on demographic criteria and attitudes towards allocation in health care. RESULTS: Participants expressed high awareness of limitations in public resources and the necessity of rationing. Acceptance of rationing could increase or decrease, depending on one's (i) awareness that healthcare resources are limited, (ii) endorsement of universal health care, (iii) knowledge and acceptance of the principles guiding rationing and (iv) knowledge about alternatives to public health services. CONCLUSIONS: This study suggests that decision makers should be more explicit in describing the dilemma of resource limitations in a publicly funded healthcare system. Openness enables citizens to gain the insight to make informed decisions, i.e. to use public services or to 'opt out' of the public sector solution if they consider rationing decisions unacceptable.

Perceptions of health-related quality of life of men and women living with coeliac disease.

Women with long-standing coeliac disease express poorer health-related quality of life (HRQoL) than men do for unclear reasons. This led us to explore differences in their understanding of HRQoL using a phenomenographic approach. We interviewed 10 coeliac subjects (mean age 57 years, range 35-73) who had been on a gluten-free diet for 10 years and had scored either high or low in the Short Form 36 Health Survey (SF-36) General Health and Vitality scales. Three dimensions were revealed that pertained to their perception of HRQoL: bodily sensations, social consequences and coping strategies. Within these, the women experienced more bowel symptoms than men did, despite keeping to a strict diet. This item was the only one predicting the SF-36 scores. The women also described more distress caused by the restrictions in daily life, closely related to their controlling of food contents. The coeliac men took advantage of using a problem-oriented coping approach while the women seeking an emotionally oriented strategy showed less satisfaction with the outcome. We conclude that the intriguing difference in HRQoL between coeliac men and women may have some of its origin in the way living with the disorder is conceptualized and coped with. The results imply that in the management of coeliac patients, gender-related aspects need to be taken into account to improve treatment outcome.