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)

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of SDM (...) are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship. (shrink)

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (...) (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

This article analyses the general ethical milieu in a nursing home for elderly residents and provides a decision-making model for analysing the ethical situations that arise. It considers what it means for the residents to live together and for the staff to be in ethically problematic situations when caring for residents. An interpretative phenomenological approach and Sandman’s ethical model proved useful for this purpose. Systematic observations were carried out and interpretation of the general ethical milieu was summarized as ‘being in (...) the same world without meeting’. Two themes and four subthemes emerged from the analysis. Three different ethical problems were analysed. The outcome of using the decision-making model highlighted the discrepancy between the solutions used and well-founded solutions to these problems. An important conclusion that emerged from this study was the need for a structured tool for reflection. (shrink)

In recent years the formerly quite strong interest in patient compliance has been questioned for being too paternalistic and oriented towards overly narrow biomedical goals as the basis for treatment recommendations. In line with this there has been a shift towards using the notion of adherence to signal an increased weight for patients’ preferences and autonomy in decision making around treatments. This ‘adherence-paradigm’ thus encompasses shared decision-making as an ideal and patient perspective and autonomy as guiding goals of care. What (...) this implies in terms of the importance that we have reason to attach to (non-)adherence and how has, however, not been explained. In this article, we explore the relationship between different forms of shared decision-making, patient autonomy and adherence. Distinguishing between dynamically and statically framed adherence we show how the version of shared decision-making advocated will have consequences for whether one should be interested in a dynamically or statically framed adherence and in what way patient adherence should be assessed. In contrast to the former compliance paradigm (where non-compliance was necessarily seen as a problem), using observations about (non-)adherence to assess the success of health care decision making and professional-patient interaction turns out to be a much less straightforward matter. (shrink)

This paper presents a systematic account of ethical issues actualised in different areas, as well as at different levels and stages of health care, by introducing organisational and other procedures that embody a shift towards person centred care and shared decision-making (PCC/SDM). The analysis builds on general ethical theory and earlier work on aspects of PCC/SDM relevant from an ethics perspective. This account leads up to a number of theoretical as well as empirical and practice oriented issues that, in view (...) of broad advancements towards PCC/SDM, need to be considered by health care ethics researchers. Given a PCC/SDM-based reorientation of health care practice, such ethics research is essential from a quality assurance perspective. (shrink)

In this article, a teleological model for analysis of everyday ethical situations in dementia care is used to analyse and clarify perennial ethical problems in nursing home care for persons with dementia. This is done with the aim of describing how such a model could be useful in a concrete care context. The model was developed by Sandman and is based on four aspects: the goal; ethical side-constraints to what can be done to realize such a goal; structural constraints; and (...) nurses’ ethical competency. The model contains the following main steps: identifying and describing the normative situation; identifying and describing the different possible alternatives; assessing and evaluating the different alternatives; and deciding on, implementing and evaluating the chosen alternative. Three ethically difficult situations from dementia care were used for the application of the model. The model proved useful for the analysis of nurses’ everyday ethical dilemmas and will be further explored to evaluate how well it can serve as a tool to identify and handle problems that arise in nursing care. (shrink)

In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two concepts can be combined (...) or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications. (shrink)

In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which seem to (...) arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. (shrink)

Intensive research is carried out to develop a disease-modifying drug for Alzheimer’s disease. The development of drug candidates that reduce Aß or tau in the brain seems particularly promising. However, these drugs target people at risk for AD, who must be identified before they have any, or only moderate, symptoms associated with the disease. There are different strategies that may be used to identify these individuals. Each of these strategies raises different ethical challenges. In this paper, we analyse these challenges (...) in relation to the risk stratification for AD necessary for using these drugs. We conclude that the new drugs must generate large health benefits for people at risk of developing AD to justify the ethical costs associated with current risk stratification methods, benefits much larger than current drug candidates have. This conclusion raises a new set of ethical questions that should be further discussed. No data are available. (shrink)

In health care priority setting different criteria are used to reflect the relevant values that should guide decision-making. During recent years there has been a development of value frameworks implying the use of multiple criteria, a development that has not been accompanied by a structured conceptual and normative analysis of how different criteria relate to each other and to underlying normative considerations. Examples of such criteria are unmet need and severity. In this article these crucial criteria are conceptually clarified and (...) analyzed in relation to each other. We argue that disease-severity and condition-severity should be distinguished and we find the latter concept better reflects underlying normative values. We further argue that unmet need does not fulfil an independent and relevant role in relation to condition-severity except for in some limited situations when having to distinguish between conditions of equal severity. (shrink)

This article analyses and presents a survey of ethical conflicts in prehospital emergency care. The results are based on six focus group interviews with 29 registered nurses and paramedics working in prehospital emergency care at three different locations: a small town, a part of a major city and a sparsely populated area. Ethical conflict was found to arise in 10 different nodes of conflict: the patient/carer relationship, the patient’s self-determination, the patient’s best interest, the carer’s professional ideals, the carer’s professional (...) role and self-identity, significant others and bystanders, other care professionals, organizational structure and resource management, societal ideals, and other professionals. It is often argued that prehospital care is unique in comparison with other forms of care. However, in this article we do not find support for the idea that ethical conflicts occurring in prehospital care are unique, even if some may be more common in this context. (shrink)

Researchers have recently provided proof of concept for uterus transplantation, giving rise to a discussion about priority setting. This article analyses whether absolute uterine‐factor infertility (AUFI), the main indication for uterus transplantation, gives rise to a healthcare need and the extent to which such a need places justified claims on public funding in a needs‐based welfare system. It is argued that, regardless of the concept of health to which one subscribes, there is a healthcare need for uterus transplantation in women (...) with AUFI. The provision of alternative ways of addressing this need, such as surrogacy and adoption, reduces its severity. Hence, where such alternatives are publicly funded, uterus transplantation is unlikely to become cost‐effective. However, where surrogacy and adoption are not publicly funded, uterus transplantation should be given a similar priority level to other assisted reproductive technologies. In these circumstances, public funding for uterus transplants may well be justified, particularly in well‐funded healthcare system with relatively generous cost‐effectiveness thresholds. (shrink)

In recent years, the issue of accepting a higher cost per health improvement for orphan drugs has been the subject of discussion in health care policy agencies and the academic literature. This article aims to provide an analysis of broadly egalitarian arguments for and against accepting higher costs per health improvement. More specifically, we aim to investigate which arguments one should agree upon putting aside and where further explorations are needed. We identify three kinds of arguments in the literature: considerations (...) of substantial equality, formal equality, and opportunity cost. We argue that considerations of substantial equality do not support higher costs per health improvement orphan drugs, even if such considerations are considered valid. On the contrary, arguments of formal equality may support accepting a higher cost per health improvement for orphan drugs. However, in order to do so, a number of both normative and empirical issues must be resolved; these issues are identified in the article. For instance, it must be settled to what extent the opportunity cost in terms of foregone health for other patients is acceptable in order to uphold formal equality. We conclude that certain arguments can be set aside, and future focus should be put on the unresolved normative and empirical issues related to formal equality and opportunity cost. (shrink)

It has been reported as an ethical problem within prehospital emergency care that ambulance professionals administer physiologically futile cardiopulmonary resuscitation (CPR) to patients having suffered cardiac arrest to benefit significant others. At the same time it is argued that, under certain circumstances, this is an acceptable moral practice by signalling that everything possible has been done, and enabling the grief of significant others to be properly addressed. Even more general moral reasons have been used to morally legitimize the use of (...) futile CPR: That significant others are a type of patient with medical or care needs that should be addressed, that the interest of significant others should be weighed into what to do and given an equal standing together with patient interests, and that significant others could be benefited by care professionals unless it goes against the explicit wants of the patient. In this article we explore these arguments and argue that the support for providing physiologically futile CPR in the prehospital context fails. Instead, the strategy of ambulance professionals in the case of a sudden death should be to focus on the relevant care needs of the significant others and provide support, arrange for a peaceful environment and administer acute grief counselling at the scene, which might call for a developed competency within this field. (shrink)

How to handle orphan drugs for rare diseases is a pressing problem in current health-care. Due to the group size of patients affecting the cost of treatment, they risk being disadvantaged in relation to existing cost-effectiveness thresholds. In an article by Niklas Juth it has been argued that it is irrelevant to take indirectly operative factors like group size into account since such a compensation would risk discounting the use of cost, a relevant factor, altogether. In this article we analyze (...) Juth’s argument and observe that we already do compensate for indirectly operative factors, both outside and within cost-effectiveness evaluations, for formal equality reasons. Based on this we argue that we have reason to set cost-effectiveness thresholds to integrate equity concerns also including formal equality considerations. We find no reason not to compensate for group size to the extent we already compensate for other factors. Moreover, groups size implying a systematic disadvantage also on a global scale, i.e. taking different aspects of the health condition of patients suffering from rare diseases into account, will provide strong reason for why group size is indeed relevant to compensate for. (shrink)

In healthcare priority settings, early access to treatment before reimbursement decisions gives rise to problems of whether negative decisions for cost‐effectiveness reasons should result in withdrawing treatment, already accessed by patients. Among professionals there seems to be a strong attitude to distinguish between withdrawing and withholding treatment, viewing the former as ethically worse. In this article the distinction between withdrawing and withholding treatment for reasons of cost effectiveness is explored by analysing the doing/allowing distinction, different theories of justice, consequentialist and (...) virtue perspectives. The authors do not find any strong reasons for an intrinsic difference, but do find some reasons for a consequentialist difference, given present attitudes. However, overall, such a difference does not, all things considered, provide a convincing reason against withdrawal, given the greater consequentialist gain of using cost‐effective treatment. As a result, patients should be properly informed when given early access to treatment, that such treatment can be later withdrawn following a negative reimbursement decision. (shrink)

The overarching aim of this article is to scrutinize how severity can work as a qualifier for the moral impetus of malady. While there is agreement that malady is of negative value, there is disagreement about precisely how this is so. Nevertheless, alleviating disease, injury, and associated suffering is almost universally considered good. Furthermore, the strength of a diseased person’s moral claims for our attention and efforts will inevitably vary. This article starts by reflecting on what kind of moral impetus (...) malady incites. We then analyze how severity may qualify this impetus. We do so by discussing the relationship between severity and need, well-being and disvalue, death, urgency, rule of rescue, and distributive justice. We then summarize our thoughts about severity as a moral qualifier. We conclude that severity is, and should continue to be seen, as a morally significant concept that deserves continued attention in the future. (shrink)

BackgroundInvoluntary treatment is a key issue in healthcare ethics. In this study, ethical issues relating to involuntary psychiatric treatment are investigated through interviews with Swedish psychiatrists.MethodsIn-depth interviews were conducted with eight Swedish psychiatrists, focusing on their experiences of and views on compulsory treatment. In relation to this, issues about patient autonomy were also discussed. The interviews were analysed using a descriptive qualitative approach.ResultsThe answers focus on two main aspects of compulsory treatment. Firstly, deliberations about when and why it was justifiable (...) to make a decision on involuntary treatment in a specific case. Here the cons and pros of ordering compulsory treatment were discussed, with particular emphasis on the consequences of providing treatment vs. refraining from ordering treatment. Secondly, a number of issues relating to background factors affecting decisions for or against involuntary treatment were also discussed. These included issues about the Swedish Mental Care Act, healthcare organisation and the care environment.ConclusionsInvoluntary treatment was generally seen as an unwanted exception to standard care. The respondents’ judgments about involuntary treatment were typically in line with Swedish law on the subject. However, it was also argued that the law leaves room for individual judgments when making decisions about involuntary treatment. Much of the reasoning focused on the consequences of ordering involuntary treatment, where risk of harm to the therapeutic alliance was weighed against the assumed good consequences of ensuring that patients received needed treatment. Cases concerning suicidal patients and psychotic patients who did not realise their need for care were typically held as paradigmatic examples of justified involuntary care. However, there was an ambivalence regarding the issue of suicide as it was also argued that risk of suicide in itself might not be sufficient for justified involuntary care. It was moreover argued that organisational factors sometimes led to decisions about compulsory treatment that could have been avoided, given a more patient-oriented healthcare organisation. (shrink)

In central definitions of shared decision-making within medical consultations we find the concept of negotiation used to describe the interaction between patient and professional in case of conflict. It has been noted that the concept of negotiation is far from clear in this context and in other contexts it is used both in terms of rational deliberation and bargaining. The articles explores whether rational deliberation or bargaining accurately describes the negotiation in shared decision-making and finds that it fails to do (...) so on both descriptive and normative grounds. At the end some notes on further analysis is given and it is suggested that the interaction is more accurately described in terms of an internal balancing of values like patient best interest, patient autonomy and patient adherence by the professional that is accepted by the patient. (shrink)

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. (shrink)

Within the western health-care context autonomyis a central value. Still, as it is used withinthis context it is far from clear what we areactually talking about. In this article theauthor outlines four different uses or aspectsof autonomy: self-determination, freedom,desire-fulfilment and independence. Oneimportant conclusion will be that in order tobe able to respect autonomy in a way thatactually brings value to the patient’s life weneed to clearly assess what aspect of autonomythe patient values and for what reason it isvalued by the (...) patient. (shrink)

BackgroundWhen rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatments. In reality, this view does not generally seem to be supported by practicians nor in legislation practices, by for example adding a ‘grandfather clause’ when rejecting a new treatment for lacking cost-effectiveness. Due to this discrepancy, our objective was to explore physicians’ and patient organization representatives’ experiences- and perceptions of withdrawing and withholding treatments in rationing situations of (...) relative scarcity.MethodsFourteen semi-structured interviews were conducted in Sweden with physicians and patient organization representatives, thematic analysis was used.ResultsParticipants commonly express internally inconsistent views regarding if withdrawing or withholding medical treatments should be deemed as ethically equivalent. Participants express that in terms of patients’ need for treatment withholding and withdrawing should be deemed ethically equivalent. However, in terms of prognostic differences, and the patient-physician relation and communication, there is a clear discrepancy which carry a moral significance and ultimately makes withdrawing psychologically difficult for both physicians and patients, and politically difficult for policy makers.ConclusionsWe conclude that the distinction between withdrawing and withholding treatment as unified concepts is a simplification of a more complex situation, where different factors related differently to these two concepts. Following this, possible policy solutions are discussed for how to resolve this experienced moral difference by practitioners and ease withdrawing treatments due to health care rationing. Such solutions could be to have agreements between the physician and patient about potential future treatment withdrawals, to evaluate the treatment’s effect, and to provide guidelines on a national level. (shrink)

Background: Ambulance professionals often address conflicts between ethical values. As individuals’ values represent basic convictions of what is right or good and motivate behaviour, research is needed to understand their value profiles. Objectives: To translate and adapt the Managerial Values Profile to Spanish and Swedish, and measure the presence of utilitarianism, moral rights and/or social justice in ambulance professionals’ value profiles in Spain and Sweden. Methods: The instrument was translated and culturally adapted. A content validity index was calculated. Pilot tests (...) were carried out with 46 participants. Ethical considerations: This study conforms to the ethical principles for research involving human subjects and adheres to national laws and regulations concerning informed consent and confidentiality. Findings: Spanish professionals favoured justice and Swedish professionals’ rights in their ambulance organizations. Both countries favoured utilitarianism least. Gender differences across countries showed that males favoured rights. Spanish female professionals favoured justice most strongly of all. Discussion: Swedes favour rights while Spaniards favour justice. Both contexts scored low on utilitarianism focusing on total population effect, preferring the opposite, individualized approach of the rights and justice perspectives. Organizational investment in a utilitarian perspective might jeopardize ambulance professionals’ moral right to make individual assessments based on the needs of the patient at hand. Utilitarianism and a caring ethos appear as stark opposites. However, a caring ethos in its turn might well involve unreasonable demands on the individual carer’s professional role. Since both the justice and rights perspectives portrayed in the survey mainly concern relationship to the organization and peers within the organization, this relationship might at worst be given priority over the equal treatment and moral rights of the patient. Conclusion: A balanced view on ethical perspectives is needed to make professionals observant and ready to act optimally – especially if these perspectives are used in patient care. Research is needed to clarify how justice and rights are prioritized by ambulance services and whether or not these organization-related values are also implemented in patient care. (shrink)

Decision-making capacity is a key concept in contemporary healthcare ethics. Previous research has mainly focused on philosophical, conceptual issues or on evaluation of different tools for assessing patients’ capacity. The aim of the present study is to investigate how the concept and its normative role are understood in Swedish psychiatric care. Of special interest for present purposes are the relationships between decisional capacity and psychiatric disorders and between health law and practical ethics.

Background: Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers’ everyday work. Research objective: The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling (...) of these problems. Research design: Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. Findings: We found six categories of ethical problems (with the main focus on problems relating to the patient’s loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. Discussion: The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Conclusion: Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems. (shrink)

Background Healthcare systems are increasingly struggling with resource constraints, given demographic changes, technological development, and citizen expectations. The aim of this article is to normatively analyze different suggestions regarding how publicly financed plastic surgery should be delineated in order to identify a well-considered, normative rationale. The scope of the article is to discuss general principles and not define specific conditions or domains of plastic surgery that should be treated within the publicly financed system. Methods This analysis uses a reflective equilibrium (...) approach, according to which considered normative judgements in one area should be logically and argumentatively coherent with considered normative judgements and background theories at large within a system. Results and conclusions In exploring functional versus non-function conditions, we argue that it is difficult to find a principled reason for an absolute priority of functional conditions over non-functional conditions. Nevertheless, functional conditions are relatively easier to establish objectively, and surgical intervention has a clear causal effect on treating a functional condition. Considering non-functional conditions that require plastic surgery [i.e., those related to appearance or symptomatic conditions ], we argue that the patient needs to experience some degree of suffering, which must be ‘validated’ in some form by the healthcare system. This validation is required for both functional and non-functional conditions. Functional conditions are validated by distinguishing between statistically normal and abnormal functioning. Similarly, for non-functional conditions, statistical normality represents a potential method for distinguishing between what should and should not be publicly funded. However, we acknowledge that such a concept requires further development. (shrink)

The aim of this article is to analyse and discuss the ethically problematic conflict raised by patients with stroke who refuse nutritional treatment. In analysing this conflict, the focus is on four different aspects: (1) Is nutritional treatment biologically necessary? (2) If necessary, is the reason for refusal a functional disability, lack of appetite or motivation, misunderstanding of the situation or a genuine conflict of values? (3) If the latter, what values are involved in the conflict? (4) How should we (...) deal with the different kinds of refusal of nutritional treatment? We argue that patients' autonomy should be respected as far as possible, while also considering that those who have suffered a stroke might re-evaluate their life as a result of a beneficial prognosis. However, if patients persist with their refusal, health care professionals should force nutritional treatment only when it is clear that the patients will re-evaluate their future life. (shrink)

Background: When healthcare personnel take part in military operations in combat zones, they experience ethical problems related to dual loyalties, that is, when they find themselves torn between expectations of doing caring and military tasks, respectively. Aim: This article aims to describe how Swedish healthcare personnel reason concerning everyday ethical problems related to dual loyalties between care and military tasks when undertaking healthcare in combat zones. Design: Abductive qualitative design. Participants and research context: Individual interviews with 15 registered nurses and (...) physicians assigned for a military operation in Mali. Ethical considerations: The participants signed up voluntarily, and requirements for informed consent and confidentiality were met. The research was approved by the Regional Ethics Review Board in Gothenburg (D no. 816-14; 24 November 2014). Findings: Three main categories emerged: reasons for not undertaking combat duties, reasons for undertaking combat duties and restricted loyalty to military duties, and 14 subcategories. Reasons for not undertaking combat duties were that it was not in their role, not according to ethical codes or humanitarian law or a breach towards patients. Reasons for undertaking combat duties were that humanitarian law does not apply or has to be treated pragmatically or that it is a case of force protection. Shortage of resources and competence were reasons for both doing and not doing military tasks. Under some circumstances, they could imagine undertaking military tasks: when under threat, if unseen or if not needed for healthcare duties. Discussion/conclusion: These discrepant views suggest a lack of a common view on what is ethically acceptable or not, and therefore we suggest further normative discussion on how these everyday ethical problems should be interpreted in the light of humanitarian law and ethical codes of healthcare personnel and following this, further training in ethical reflection before going on military operations. (shrink)

In the article the concept of natural death as used in end-of-life decision contexts is explored. Reviewing some recent empirical studies on end-of-life decision-making, it is argued that the concept of natural death should not be used as an action-guiding concept in end-of-life decisions both for being too imprecise and descriptively open in its current use but mainly since it appears to be superfluous to the kind of considerations that are really at stake in these situations. Considerations in terms of (...) the quality of life cost of the intervention in relation to the quality and length of life benefits of the same intervention. In referring to the concept of natural death we risk to blur these considerations and end up in difficult distinctions between what is a natural and non- or un-natural death, a distinction which it is argued is of no real moral interest. (shrink)

Introduction: Ethical competence in professional practice can be considered essential among nurses and nurses in ambulance care encounter ethical dilemmas frequently. To enhance ethical competence among students in the ambulance specialist nursing program, high-fidelity simulation scenarios including ethical dilemmas were introduced as a learning activity. Research aim: The research aim was to investigate the usefulness of high-fidelity simulation in ambulance specialist nurse education to teach ethical reasoning when caring for children. Research design: This study was conducted as a qualitative interview (...) study, complemented with observations and using field notes and qualitative interviews for data collection. Data was analysed using deductive qualitative content analysis based on a care ethical model. Participants and research context: Participants ( n = 35) were recruited from an ambulance nurse educational program at a Swedish university. Data was collected after the students took part in two high-fidelity simulations involving children in an ambulance care setting. Ethical considerations: The study has been vetted and approved by the ethical council at the University of Borås, Sweden. The study follows the Helsinki Declaration’s advice on ethical principles. Results: The results showed that most of the students expressed some form of ethical reasoning during the simulation sessions, which were elaborated and reflected upon during the debriefing part of the sessions. The simulation design seemed to have a great impact on the outcome of the student’s ethical reasoning, where increased immersion led to deeper emotional engagement among the students which increased awareness of their personal preconceptions. Conclusions: This study aimed to investigate whether high-fidelity simulations could be useful to stimulate ethical reflections and contribute to increased ethical competence among students. In conclusion, a well-designed high-fidelity simulation can be useful as an educational tool to learn and enhance ethical competence among specialist ambulance nursing students. (shrink)

Priority setting of scarce resources in healthcare is high on the agenda of most healthcare systems implying a need to develop robust foundations for making fair allocation decisions. One central factor for such decisions in needs-based systems, following both empirical studies and theoretical analyses, is severity. However, it has been noted that severity is an under-theorized concept. One such aspect is how severity should relate to temporality. There is a rich discussion on temporality and distributive justice, however, this discussion needs (...) to be adapted to the practical and ethical requirements of healthcare priority setting principles at mid-level. In this article, we analyze how temporal aspects should be taken into account when assessing severity as a modifier for cost-effectiveness. We argue that when assessing the severity of a condition, we have reason to look at complete conditions from a time-neutral perspective, meaning that we take the full affectable stretch of the condition into account without modifying severity as patients move through the temporal stretch and without discounting the future. We do not find support for taking the ‘shape’ of a condition into account per se, e.g. whether the severity has a declining or inclining curve, or that severity is intermittent rather than continuous. In order to take severity seriously, we argue that we have reason to apply a quantified approach where every difference in severity should impact on priority setting. In conclusion, we find that this approach is practically useful in actual priority setting. (shrink)

When considering the introduction of a new intervention in a budget constrained healthcare system, priority setting based on fair principles is fundamental. In many jurisdictions, a multi-criteria approach with several different considerations is employed, including severity and cost-effectiveness. Such multi-criteria approaches raise questions about how to balance different considerations against each other, and how to understand the logical or normative relations between them. For example, some jurisdictions make explicit reference to a large patient benefit as such a consideration. However, since (...) patient benefit is part of a cost-effectiveness assessment it is not clear how to balance considerations of greater patient benefit against considerations of severity and cost-effectiveness. The aim of this paper is to explore the role of a large patient benefit as an independent criterion for priority setting in a healthcare system also considering severity and cost-effectiveness. By taking the opportunity cost of new interventions (i.e., the health forgone in patients already receiving treatment) into account, we argue that patient benefit has a complex relationship to priority setting. More specifically, it cannot be reasonably concluded that large patient benefits should be given priority if severity, cost-effectiveness, and opportunity costs are held constant. Since we cannot find general support for taking patient benefit into account as an independent criterion from any of the most discussed theories about distributive justice: utilitarianism, prioritarianism, telic egalitarianism and sufficientarianism, it is reasonable to avoid doing so. Hence, given the complexity of the role of patient benefit, we conclude that in priority practice, a large patient benefit should not be considered as an independent criterion, on top of considerations of severity and cost-effectiveness. (shrink)

Background Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses’ prioritizations in their work to achieve well-being and health for nursing home residents. Aim The aim of this study was to explore nursing home nurses’ priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. Research design, participants, and research context We conducted a (...) qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. Ethical considerations Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). Findings We identified an overarching theme—nursing home nurses struggling on multiple fronts, “just do it”—and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives’ expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. Conclusions Nurses’ priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses’ priorities. Nursing home nurses need organizational and managerial support to prioritize. (shrink)

Given resource constraints in healthcare, demands justice and equity require the constant development of material principles for resource distribution. In many cases, such material principles are formulated as mid-level principles, well-adapted to handle healthcare distribution but suffering from aspects outside the healthcare context that affect their application. In healthcare, factors outside the healthcare system will sometimes affect patients’ equal opportunity to receive treatment and achieve health. Examples of such factors might include an individual’s economic means, the cost of drugs, geography, (...) etc. This article explores whether the formal equality principle could help us address such problems. It is argued that the traditional (thin) formal equality principle can aid in priority setting, both as a heuristic tool to aid in consistency and also in handling under-determined cases. However, it appears to be too ‘thin’ to handle problems caused by factors outside the healthcare context. In the article, I explore a more robust version of the formal equality principle and argue that such a principle can be used to address such cases. However, even a more comprehensive formal equality principle will need to consider whether some other actors have a moral responsibility to address the problem or whether the issue could be solved more effectively by others. Furthermore, such a principle needs to consider whether the opportunity cost of achieving ‘thick’ formal equality is acceptable, given the material principles of distribution. (shrink)

Background: Severity plays an essential role in healthcare priority setting. Still, severity is an under-theorised concept. One controversy concerns whether severity should be risk- and/or time-sensitive. The aim of this article is to provide a normative analysis of this question. Methods: A reflective equilibrium approach is used, where judgements and arguments concerning severity in preventive situations are related to overall normative judgements and background theories in priority-setting, aiming for consistency. Analysis, discussion, and conclusions: There is an argument for taking the (...) risk of developing a condition into account, and we do this when we consider the risk of dying in the severity assessment. If severity is discounted according to risk, this will ‘dilute’ severity, depending on how well we are able to delineate the population, which is dependent on the current level of knowledge. This will potentially have a more far-reaching effect when considering primary prevention, potentially the de-prioritisation of effective preventive treatments in relation to acute, less-effective treatments. The risk arguments are dependent on which population is being assessed. If we focus on the whole population at risk, with T 0 as the relevant population, this supports the risk argument. If we instead focus on the population of as-yet (at T 0 ) unidentified individuals who will develop the condition at T 1, risk will become irrelevant, and severity will not be risk sensitive. The strongest argument for time-sensitive severity (or for discounting future severity) is the future development of technology. On a short timescale, this will differ between different diagnoses, supporting individualised discounting. On a large timescale, a more general discounting might be acceptable. However, we need to also consider the systemic effects of allowing severity to be risk- and time-sensitive. (shrink)

It is uncontroversial to claim that the extent to which health care interventions benefit patients is a relevant consideration for health care priority setting. However, when effects accrue to the individual patient, effects of a more indirect kind may accrue to other individuals as well, such as the patient's children, friends, or partner. If, and if so how, such relational effects should be considered relevant in priority setting is contentious. In this paper, we illustrate this question by using disease‐modifying drugs (...) for Alzheimer's disease as a case in point. The ethical analysis begins by sketching the so‐called prima facie case for ascribing moral weight to relational effects and then moves on to consider a number of objections to it. We argue that, whereas one set of objections may be dismissed, there is another set of arguments that poses more serious challenges for including relational effects in priority setting. (shrink)

In the article Should rare diseases get special treatment? by Monica Q F de Magalhaes,1 it is argued that rarity is not a morally relevant feature to consider in prioritising treatment in healthcare, but severity is. A central conclusion in the article is that severity rather than prevalence should guide different cost-effectiveness thresholds. Hence, I take it, she answers no to the question in her own heading. I agree with all of this—and with most of her other arguments and conclusions (...) in the article—except for the clause ‘rather than prevalence’. For this reason, I find the article misses its’ mark. Let me explain by taking Sweden as an example. Sweden has a legally established ethics framework for priority setting in healthcare since 1997, comprising three principles: human-dignity principle, needs-solidarity principle and cost-effectiveness principle. The implication of these principles in practice is that the higher the severity—the higher the cost-effectiveness threshold acceptable.2 During the last 10 years or so, the highest accepted cost-effectiveness threshold for the most severe conditions have been in the order of €100 000/QALY. Until a few years ago rarity or prevalence was …. (shrink)

In Gustavsson et al,1 we discussed the ethical issues that arise when identifying the relevant population for disease-modifying drugs targeting Alzheimer disease. More specifically, we focused on novel immunotherapies aimed at amyloid β and tau, two relevant biomarkers. The commentaries to our paper2 3 acknowledge our conclusion: screening for AD involve ethical costs that cannot be justified unless a drug with clinically relevant effect becomes available. Since Aduhelm is the only immunotherapy targeting AD currently approved by the Food and Drug (...) Administration, we use that as a …. (shrink)

The rise in the number of people on sick leave for common mental disorders is a growing concern, both from a societal and individual perspective. One common suggestion to improve the return-to-work process is increased cooperation between the relevant parties, including at least the employer, the social insurance agency and health care. This suggestion is often made on the presumption that all parties share the common goal of reintegrating the patient-employee back into the workplace. In this paper we investigate this (...) presumption by mapping out the ethical frameworks of these three key actors in any return-to-work process. We show that although the goals of these actors often, and to a large extent, overlap there are potential differences and tensions between their respective goals. Further, we emphasise that there may be other limitations to an actor’s participation in the process. In particular the health care system is required to respect patient autonomy and confidentiality. There is also an inherent tension in the dual roles of health care professionals as therapists and expert witnesses in work ability assessment. In conclusion, there are potential tensions between the key actors in the return-to-work process. These tensions need to be addressed in order to enable an increased cooperation between actors and to facilitate the development of a feasible plan of action for all parties, including the employee. (shrink)

With healthcare systems under pressure from scarcity of resources and ever‐increasing demand for services, difficult priority setting choices need to be made. At the same time, increased attention to patient involvement in a wide range of settings has given rise to the idea that those who are eventually affected by priority setting decisions should have a say in those decisions. In this paper, we investigate arguments for the inclusion of patient representatives in priority setting bodies at the policy level. We (...) find that the standard justifications for patient representation, such as to achieve patient‐relevant decisions, empowerment of patients, securing legitimacy of decisions, and the analogy with democracy, all fall short of supporting patient representation in this context. We conclude by briefly outlining an alternative proposal for patient participation that involves patient consultants. (shrink)