To investigate whether Swedish physicians, contrary to Swedish health care policy, employ considerations of patient responsibility for illness when rationing expensive treatments.

Combatting chronic, lifestyle-related disease has become a healthcare priority in the developed world. The role personal responsibility should play in healthcare provision has growing pertinence given the growing significance of individual lifestyle choices for health. Media reporting focussing on the ‘bad behaviour’ of individuals suffering lifestyle-related disease, and policies aimed at encouraging ‘responsibilisation’ in healthcare highlight the importance of understanding the scope of responsibility ascriptions in this context. Research into the social determinants of health and psychological mechanisms of health behaviour (...) could undermine some commonly held and tacit assumptions about the moral responsibility of agents for the sorts of lifestyles they adopt. I use Philip Petit's conception of freedom as ‘fitness to be held responsible’ to consider the significance of some of this evidence for assessing the moral responsibility of agents. I propose that, in some cases, factors outside the agent's control may influence behaviour in such a way as to undermine her freedom along the three dimensions described by Pettit: freedom of action; a sense of identification with one's actions; and whether one's social position renders one vulnerable to pressure from more powerful others. (shrink)

The concept of responsibility for health is a significant feature of health discourse and public health policy, but application of the concept is poorly understood. This paper offers an analysis of the concept in two ways. Following an examination of the use of the word ‘responsibility’ in the nursing and wider health literature using three examples, the concept of ‘responsibility for health’ as fulfilling a social function is discussed with reference to policy documents from the UK. The philosophical literature on (...) moral responsibility is introduced, and in considering two versions, reactive attitudes and accountability, it is argued that in application both can be regarded, though with different emphasis, as being constituted in three parts: a responsible agent; having obligations ; and being susceptible to being held responsible if he fails to meet them. The three‐stage model is consistent with the examples of the word responsibility in use, but application to the social function model causes a number of problems for healthcare practice, especially for the reactive attitudes account. Apart from considerable problems in stating what exactly the obligations are and how they can be justified; and how blame might justly be apportioned and by whom, the very ideas of obligation and blame are in conflict within healthcare systems and professional nursing practice which have foundations deeply embedded in the notion of the supremacy of personal autonomy. It is concluded that current application of the concept of responsibility for health is conceptually incoherent, and if it is to retain its place in health policy and discourse, urgent remedy is required. (shrink)

A considerable literature has emerged around the idea of using ‘personal responsibility’ as an allocation criterion in healthcare distribution, where a person's being suitably responsible for their health needs may justify additional conditions on receiving healthcare, and perhaps even limiting access entirely, sometimes known as ‘responsibilisation’. This discussion focuses most prominently, but not exclusively, on ‘luck egalitarianism’, the view that deviations from equality are justified only by suitably free choices. A superficially separate issue in distributive justice concerns the two–way relationship (...) between health and other social goods: deficits in health typically undermine one's abilities to secure advantage in other areas, which in turn often have further negative effects on health. This paper outlines the degree to which this latter relationship between health and other social goods exacerbates an existing problem for proponents of responsibilisation (the ‘harshness objection’) in ways that standard responses to this objection cannot address. Placing significant conditions on healthcare access because of a person's prior responsibility risks trapping them in, or worsening, negative cycles where poor health and associated lack of opportunity reinforce one another, making further poor yet ultimately responsible choices more likely. It ends by considering three possible solutions to this problem. (shrink)

Fair priority setting is based on morally sound criteria. Still, there will be cases when these criteria, our primary considerations, are tied and therefore do not help us in choosing one allocation over another. It is sometimes suggested that such cases can be handled by tiebreakers. In this paper, we discuss two versions of tiebreakers suggested in the literature. One version is to preserve fairness or impartiality by holding a lottery. The other version is to allow secondary considerations, considerations that (...) are not part of our primary priority setting criteria, to be decisive. We argue that the argument for preserving impartiality by holding a lottery is sound, while the argument for using tiebreakers as secondary considerations is not. Finally, we argue that the instances where a tiebreaker seems necessary are precisely the situations where we have strong reasons for preferring a lottery. We conclude that factors that we consider valuable should all be included among the primary considerations, while ties should be settled by lotteries. (shrink)

There is a long-standing debate concerning the eligibility of patients suffering from alcohol-related end-stage liver disease (ARESLD) for deceased donor liver transplantation. The question of retrospective and/or prospective responsibility has been at the center of the ethical discussion. Several authors argue that these patients should at least be regarded as partly responsible for their ARESLD. At the same time, the arguments for retrospective and/or prospective responsibility have been strongly criticized, such that no consensus has been reached. A third option was (...) proposed as a form of compromise, namely that responsibility should only be used as a tiebreaker in liver allocation. The present study provides an ethical investigation of this third option. First, we will provide an overview of the main arguments that have been offered for and against the use of responsibility as an allocation criterion. Second, we will explore the concept of responsibility as a tiebreaker in detail and discuss several types of situations, in which responsibility could be used as a tiebreaker, as well as the main ethical challenges associated with them. As we will show, an ethical justified use of responsibility as a tiebreaker is limited to a very restricted number of cases and is associated with a number of ethical concerns. For this reason, waiting time should be preferred as a tiebreaker in liver allocation, even though the criterion of waiting time, too, raises a number of equity-related concerns. (shrink)

BackgroundThe German guidelines for liver transplantation stipulate that every patient with alcohol-related liver disease needs to prove evidence of a 6-month abstinence period before they can be admitted to the waiting list for liver transplantation. This internationally widespread abstinence rule has been criticised as it prevents patients at least temporarily from receiving an effective and potentially life-saving therapy. This poses the question of how this abstinence rule is depicted and justified by transplantation professionals.ArgumentsIn case of the 6‑month abstinence rule, guidelines (...) are used as a tool for rationing health care. Four frames of interpretation can be reconstructed from the ethical and medical literature. Each linguistically mediated frame offers a different representation of the 6‑month abstinence rule. According to these different framings, the 6‑month waiting period is depicted (1) as a diagnostic tool to determine the regenerative capacity of the liver, (2) as a prognostic tool to determine the prospects of success of a transplantation, and (3) to determine the drinking behaviour after transplantation. In a further context, the abstinence rule (4) is interpreted as an expression of an obligation to avoid behaviour harmful to health.ConclusionThese four frames provide linguistically mediated patterns of interpretation that are used by different actors to limit the indication for liver transplantation. They give rise to different ethical questions that allow a systematic ethical assessment of the 6‑month abstinence rule. (shrink)

Die deutschen Richtlinien zur Lebertransplantation sehen vor, dass Patient*innen mit alkoholbedingten Lebererkrankungen in der Regel eine sechsmonatige Karenz nachweisen müssen, bevor sie auf die Warteliste für eine Lebertransplantation aufgenommen werden können. Die international weit verbreitete Karenzregel wurde von Beginn an sehr kritisch diskutiert, da hiermit Patient*innen eine wirksame und potentiell lebensrettende Therapie zumindest vorübergehend vorenthalten wird. Sie kommt in der Praxis einer Eingrenzung der Indikation zur Lebertransplantation gleich. Aus der medizinischen Fachliteratur lassen sich vier Interpretationsrahmen rekonstruieren, die mittels Herausstellung bestimmter (...) Aspekte eine jeweils unterschiedliche Wahrnehmung und Konzeptualisierung der sechsmonatigen Karenzregel begründen. Diese sprachlich vermittelten Deutungsmuster werden von Akteur*innen zur Eingrenzung der Indikation zur Lebertransplantation genutzt. Innerhalb dieser Interpretationsrahmen wird die sechsmonatige Karenzzeit jeweils 1) als diagnostisches Werkzeug zur Bestimmung der Regenerationsfähigkeit der Leber, 2) als prognostisches Werkzeug zur Bestimmung der Erfolgsaussichten einer Transplantation, bzw. 3) zur Bestimmung des Trinkverhaltens nach Transplantation dargestellt. In einem weiteren Rahmen wird die Karenzregel 4) als Ausdruck einer Verpflichtung zur Vermeidung von gesundheitsschädlichem Verhalten interpretiert. Aus diesen vier Interpretationsrahmen ergeben sich unterschiedliche ethische Fragestellungen, die eine systematische ethische Beurteilung der Karenzregel ermöglichen. In den ersten drei Interpretationsrahmen wird wiederum selbst die Frage nach der medizinischen Indiziertheit der Karenzregel aufgeworfen. (shrink)

Abstract:Facial transplantation is emerging as a therapeutic option for self-inflicted gunshot wounds. The self-inflicted nature of this injury raises questions about the appropriate role of self-harm in determining patient eligibility. Potential candidates for facial transplantation undergo extensive psychosocial screening. The presence of a self-inflicted gunshot wound warrants special attention to ensure that a patient is prepared to undergo a demanding procedure that poses significant risk, as well as stringent lifelong management. Herein, we explore the ethics of considering mechanism of injury (...) in the patient selection process, referring to the precedent set forth in solid organ transplantation. We also consider the available evidence regarding outcomes of individuals transplanted for self-inflicted mechanisms of injury in both solid organ and facial transplantation. We conclude that while the presence of a self-inflicted gunshot wound is significant in the overall evaluation of the candidate, it does not on its own warrant exclusion from consideration for a facial transplantation. (shrink)

Patient autonomy and distributive justice are fundamental ethical principles that may be at risk in liver transplant units where decisions are dictated by the need to maximise the utility of scarce donor organs. The processes of patient selection, organ allocation and prioritisation on the wait list have evolved in a constrained environment, leading to high levels of complexity and low transparency. Regarding paternalism, opaque listing and allocation criteria, patient factors such as passivity, guilt, chronic illness and sub-clinical encephalopathy are cited (...) as factors that may inhibit patient engagement. Regarding justice, established regional, gender and race based inequities are described. The paradox whereby hepatologists both advocate for individual patients and discharge their duty of stewardship to apportion organs according to larger utilitarian principles is explored. Competing subjective factors such as physicians’ perception of moral responsibility, the qualitative nature of expert medical assessment and institutional or personal loyalty to re-transplantation candidates are described. Realistic limits of self-determination and justice are discussed, and possible future directions in terms of patient involvement proposed. (shrink)

When it comes to determining how healthcare resources should be allocated, there are many factors that could—and perhaps should—be taken into account. One such factor is a patient’s responsibility for his or her illness, or for the behavior that caused it. Policies that take responsibility for the unhealthy lifestyle or its outcomes into account—responsibility-sensitive policies—have faced a series of criticisms. One holds that agents often fail to meet either the control or epistemic conditions on responsibility with regard to their unhealthy (...) lifestyles or their outcomes. Another holds that even if patients sometimes are responsible for these items, we cannot know whether a particular patient is responsible for them. In this article, we propose a type of responsibility-sensitive policy that may be able to surmount these difficulties. Under this type of policy, patients are empowered to change to a healthier lifestyle by being given what we call a ‘Golden Opportunity’ to change. Such a policy would not only avoid concerns about patients’ fulfilment of conditions on responsibility for their lifestyles, it would also allow healthcare authorities to be justified in believing that a patient who does not change her lifestyle is responsible for the unhealthy lifestyle. We conclude with a discussion of avenues for further work, and place this policy in the broader context of the debate on responsibility for health. (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)

While solid organ transplantation for patients with substance use issues has attracted ethical discussion, a typology of the ethics themes has not been articulated in the literature. We conducted a scoping review of peer-reviewed literature on solid organ transplantation and substance use published between January 1997 and April 2016. We aimed to identify and develop a typology of the main ethical themes discussed in this literature and to identify gaps worthy of future research. Seventy articles met inclusion criteria and underwent (...) inductive content analysis. Four main ethical themes were identified: (1) personal responsibility; (2) utility; (3) moral character; and (4) fairness. Each theme had multiple sub-themes and there was substantial overlap between themes. This scoping review identified a disproportionate emphasis in the literature regarding personal responsibility, which was referenced by each of the other themes, and a narrow focus on alcohol and liver. We recommend future research further investigate these connections between ethical themes and focus on ethical issues associated with transplants from organ groups other than liver for patients who use substances other than alcohol. (shrink)