This article is about the justifiability of accepting worse cost effectiveness for orphan drugs, that is, treatments for rare diseases, in a publicly financed health care system. Recently, three arguments have been presented that may be used in favour of exceptionally advantageous economic terms for orphan drugs. These arguments share the common feature of all referring to considerations of justice or fairness: the argument of the irrelevance of group size, the argument from the principle of need, and the argument of (...) identifiability. It is argued that all of these arguments fail to support the conclusion that orphan drugs should be subsidized to a larger extent than treatments for common diseases. The argument of the irrelevance fails to distinguish between directly and indirectly relevant considerations of fairness or justice. The recent attempt to revive the moral relevance of identifiability has provided no novel reasons to think that identifiability is morally relevant in itself or due to considerations of fairness and justice. The argument from the principle of need does not fail due to any inherent flaw in the principle as such. Rather, this principle can be interpreted in different ways, and none of these interpretations support exceptionally advantageous terms economically for treating rare diseases specifically. It is concluded that we are awaiting justice based reasons for the preferential treatment of orphan drugs. (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)

Principles of need are constantly referred to in health care priority setting. The common denominator for any principle of need is that it will ascribe some kind of special normative weight to people being worse off. However, this common ground does not answer the question how a plausible principle of need should relate to the aggregation of benefits across individuals. Principles of need are sometimes stated as being incompatible with aggregation and sometimes characterized as accepting aggregation in much the same (...) way as utilitarians do. In this paper we argue that if one wants to take principles of need seriously both of these positions have unreasonable implications. We then characterize and defend a principle of need consisting of sufficientarian elements as well as prioritarian which avoids these unreasonable implications. (shrink)

In this paper, for the benefit of reflection processes in clinical and in local, regional, and national priority-setting, we aim to develop an ethical theoretical framework that includes both ethical principles and medium-range narratives. We present our suggestion in the particular case of having to choose between treatment interventions for attention deficit hyperactivity disorder and treatment interventions for other conditions or diseases, under circumstances of scarcity. In order to arrive at our model, we compare two distinct ethical approaches: a generalist (...) approach and a particularist approach. Our focus is on Sweden, because in Sweden prioritization in healthcare is uniquely governmentally regulated by the “ethics platform.” We will present a scenario to analyse the strengths and weaknesses of the generalist principled perspective of the ethics platform and the particularist perspective of narrative ethics. We will suggest an alternative approach to prioritization, which we dub a “principles plus medium-range narratives” approach. Notwithstanding the undeniably central role of principles in distributive justice, we claim that medium-range narratives concerning individuals or groups who stand to benefit or lose from ADHD prioritization practices should also be read or listened to and taken into account at all levels of priority-setting. These narratives are expected to ethically optimize clinical priority-setting, as well as that undertaken at local, regional, and national levels. (shrink)

Endeavors have been made to found and incorporate ethical values in most aspects of healthcare, including health technology assessment. Health technologies and their assessment are value-laden and could trigger problems with dissemination if they contradict societal norms. Per WHO definition, preconception expanded carrier screening is a new health technology that warrants assessment. It is a genetic test offered to couples who have no known risk of recessive genetic diseases and are interested pregnancy. A test may screen for carrier status of (...) several autosomal recessive diseases and X-linked at one go. The technique has been piloted in the Netherlands and is discussed in other countries. The aim of the study was to examine values and value conflicts that healthcare experts recounted in relation to the discussion of implementation and use of preconception ECS in Sweden. We interviewed ten experts, who were associated with influencing health policymaking in Sweden. We employed systematizing expert interviews, which endeavor to access experts’ specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, one a legal expert, one a theologian and one a political party representative in the parliament. The participants functioned as members of two non-governmental bodies and three governmental organizations. We employed thematic analysis to identify themes, categories and subcategories. Two main themes surfaced: values and value conflicts. The main categories of Respect for persons, Solidarity, Human dignity, Do no harm, Health and Love formed the first theme, while values conflicting with autonomy and integrity respectively, constituted the second theme. Concepts relating to respect for persons were the most commonly mentioned among the participants, followed by notions alluding to solidarity. Furthermore, respondents discussed values conflicting with Swedish healthcare ones such as equality and solidarity. The experts highlighted values and concepts that are distinctive of welfare states such as Sweden and delineated how preconception ECS could challenge such values. Moreover, the analysis revealed that certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity were on top of the list. (shrink)

In this article I analyse and discuss guidelines for priority setting in crisis management at a regional level in Sweden. The guidelines concern three types of crises: pandemics, large losses of electric power and interruptions in water supply. Pandemics are typical public health issues. Large losses of electric power and interruptions in water supply are in themselves not, but may have serious public health consequences. These guidelines are compared with guidelines for priority setting in health care. This is done because (...) of the central position of health care in the management of many different types of crises. The comparison shows clear differences. In the analysis, I use a distinction between substantive principles of priority setting and process-oriented principles. Regarding substantive principles, I have found that the guidelines point in different directions. This seems acceptable, however, since they focus on different problems. Moreover, it seems possible to integrate the various context-dependent principles by relating them to higher order principles. Regarding process-oriented principles, I have found that how and to what extent these principles are applied in the guidelines vary. If we want to apply these principles in a more satisfying way, this would require a more systematic approach. (shrink)

The proportion of elderly in society is growing rapidly, leading to increasing health care costs. New remote monitoring technologies are expected to lower these costs by reducing the number of close encounters with health care professionals, for example the number of visits to health care centres. In this paper, I discuss issues of priority setting raised by this expectation. As a starting-point, I analyse the recent debate on principles for priority setting in Sweden. The Swedish debate illustrates that developing an (...) approach to priority setting is an ongoing process. On the basis of this analysis, I conclude that several different ethical principles, and specifications of these principles, can be appealed to for giving priority—over close encounters—to a large-scale introduction of remote monitoring technologies in health care services to elderly people, but also that many specifications can be appealed to against giving such priority. I propose that given the different views on principles, it is necessary to develop fair procedures of deliberation on these principles and their application, in particular in order to reach agreement on exactly how much resources should be allocated to remote monitoring and how much to close encounters. I also present a few points to consider in a large-scale introduction of remote monitoring. (shrink)