What challenges must a principle of need for prioritisations in health care meet in order to be plausible and practically useful? Some progress in answering this question has recently been made by Hope, Østerdal and Hasman. This article continue their work by suggesting that the characteristic feature of principles of needs is that they are sufficientarian, saying that we have a right to a minimally acceptable or good life or health, but nothing more. Accordingly, principles of needs must answer two (...) distributive questions: when do we have sufficient and how should we prioritise among those who do not yet have a sufficiency? Furthermore, it is argued that Roger Crisp’s theory of need, which combines sufficientarianism with prioritarianism below the threshold of need, is better equipped than alternatives to answer these questions as well as meeting the challenges formulated by Hope, Østerdal and Hasman. However, Crisp’s theory faces two major challenges. First, it has to say something about the currency of distribution: a principle of need must be complemented either with a theory on the human good or a theory about the proper goals of health care. Second, it has to say something about where the threshold should be set. However, any attempt to set a threshold seems morally arbitrary in the light of the sufficientarian idea that those just above the threshold never should be given priority over those just below the threshold. (shrink)

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)

This book involves an in-depth analysis of the ethical, political and philosophical issues related to health-oriented screening programs.

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)

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)

Different ideas of the normative relevance of autonomy can give rise to profoundly different action-guiding principles in healthcare. If autonomy is seen as a value rather than as a right, it can be argued that patients’ decisions should sometimes be overruled in order to protect or promote their own autonomy. We refer to this as paternalism in the name of autonomy. In this paper, we discuss different elements of autonomy (decision-making capacity, efficiency, and authenticity) and arguments in favor of paternalism (...) for the sake of autonomy that have been proposed in the bioethical debate. We argue that if autonomy is valuable, then paternalism for the sake of autonomy may be justified. However, policies allowing paternalism in the name of autonomy may be self-defeating. (shrink)

In a recent paper, Peter Singer suggests that some interesting new findings in experimental moral psychology support what he has contended all along—namely that intuitions should play little or no role in adequate justifications of normative ethical positions. Not only this but, according to Singer, these findings point to a central flaw in the method (or epistemological theory) of reflective equilibrium used by many contemporary moral philosophers. In this paper, we try to defend reflective equilibrium from Singer’s attack and, in (...) part, we do this by discussing Singer’s own favoured moral methodology as outlined in his Practical Ethics . Although basing ethics solely on (certain kinds of) intuitions certainly is problematic, we argue, basing it solely on ‘reason’ gives rise to similar problems. The best solution would arguably be one which could strike a balance between the two—but, we suggest, this is precisely what reflective equilibrium is all about. (shrink)

In healthcare ethics there is a discussion regarding whether autonomy of personal preferences, what sometimes is referred to as authenticity, is necessary for autonomous decision-making. It has been argued that patients’ decisions that lack sufficient authenticity could be deemed as non-autonomous and be justifiably overruled by healthcare staff. The present paper discusses this issue in relation certain psychiatric disorders. It takes its starting point in recent qualitative studies of the experiences and thoughts of patients’ with anorexia nervosa where issues related (...) to authenticity seem particularly relevant. The paper examines different interpretations of authenticity relevant for autonomy and concludes that the concept, as it has been elaborated in recent debate, is highly problematic to use as a criterion for autonomous decision-making in healthcare. (shrink)

Clinical decisions are expected to be based on factual evidence and official values derived from healthcare law and soft laws such as regulations and guidelines. But sometimes personal values instead influence clinical decisions. One way in which personal values may influence medical decision-making is by their affecting factual claims or assumptions made by healthcare providers. Such influence, which we call ‘value-impregnation,’ may be concealed to all concerned stakeholders. We suggest as a hypothesis that healthcare providers’ decision making is sometimes affected (...) by value-impregnated factual claims or assumptions. If such claims influence e.g. doctor–patient encounters, this will likely have a negative impact on the provision of correct information to patients and on patients’ influence on decision making regarding their own care. In this paper, we explore the idea that value-impregnated factual claims influence healthcare decisions through a series of medical examples. We suggest that more research is needed to further examine whether healthcare staff’s personal values influence clinical decision-making. (shrink)

Background The aim of this study was to investigate whether physicians who felt strongly for or against a treatment, in this case a moderately life prolonging non-curative cancer treatment, differed in their estimation of medical indication for this treatment as compared to physicians who had no such sentiment. A further aim was to investigate how the notion of medical indication was conceptualised. Methods A random sample of GPs, oncologists and pulmonologists comprised the study group. Respondents were randomised to receive either (...) version of a case presentation; in one version, the patient had smoked and in the other version she had never smoked. The physicians were labelled value-neutral and value-influenced on the basis of their attitude towards the treatment. Results In the ‘value-influenced’ group, there was a significant difference in the estimation of medical indication for treatment depending upon whether the patient had smoked or never smoked ). There was no such difference in the ‘value-neutral’ group. Conclusion This study shows that compared to value-neutral physicians, value-influenced physicians are more likely to base decisions of medical indication on medically irrelevant factors. Moreover, medical indication is used in an ambiguous manner. Hence, we recommend that the usage of ‘medical indication’ be disciplined. (shrink)

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

Respect for autonomy is typically considered a key reason for allowing physician assisted suicide and euthanasia. However, several recent papers have claimed this to be grounded in a misconception of the normative relevance of autonomy. It has been argued that autonomy is properly conceived of as a value, and that this makes assisted suicide as well as euthanasia wrong, since they destroy the autonomy of the patient. This paper evaluates this line of reasoning by investigating the conception of valuable autonomy. (...) Starting off from the current debate in end-of-life care, two different interpretations of how autonomy is valuable is discussed. According to one interpretation, autonomy is a personal prudential value, which may provide a reason why euthanasia and assisted suicide might be against a patient’s best interests. According to a second interpretation, inspired by Kantian ethics, being autonomous is unconditionally valuable, which may imply a duty to preserve autonomy. We argue that both lines of reasoning have limitations when it comes to situations relevant for end-of life care. It is concluded that neither way of reasoning can be used to show that assisted suicide or euthanasia always is impermissible. (shrink)

The Rule of Double Effect (RDE) holds that it may be permissible to harm an individual while acting for the sake of a proportionate good, given that the harm is not an intended means to the good but merely a foreseen side-effect. Although frequently used in medical ethical reasoning, the rule has been repeatedly questioned in the past few decades. However, Daniel Sulmasy, a proponent who has done a lot of work lately defending the RDE, has recently presented a reformulated (...) and more detailed version of the rule. Thanks to its greater precision, this reinvented RDE avoids several problems thought to plague the traditional RDE. Although an improvement compared with the traditional version, we argue that Sulmasy's reinvented RDE will not stand closer scrutiny. Not only has the range of proper applicability narrowed significantly, but, more importantly, Sulmasy fails to establish that there is a morally relevant distinction between intended and foreseen effects. In particular, he fails to establish that there is any distinction that can account for the alleged moral difference between sedation therapy and euthanasia. (shrink)

A scientific paradigm typically embraces research norms and values, such as truth-seeking, critical thinking, disinterestedness, and good scientific practice. These values should prevent a paradigm from introducing defective assumptions. But sometimes, scientists who are also physicians develop clinical norms that are in conflict with the scientific enterprise. As an example of such a conflict, we have analyzed the genesis and development of the shaken baby syndrome paradigm. The point of departure of the analysis is a recently conducted systematic literature review, (...) which concluded that there is very low scientific evidence for the basic assumption held by Child Protection Teams: when certain signs are present the infant has been violently shaken. We suggest that such teams have developed more value-based than scientific-based criteria when classifying SBS cases. Further, we suggest that the teams are victims of “groupthink,” aggravating the difficulties in considering critics’ questioning the criteria established by the teams. (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 this article we argue that the principle of need, on some interpretations, could be used to justify the spending of publically funded health care resources on cognitive enhancement and that this also holds true for individuals whose cognitive capacities are considered normal.The increased, and to an extent, novel demands that the modern technology and information society places on the cognitive capacities of agents, e.g., regarding good and responsible decision-making, have blurred the line between treatment and enhancement. More specifically, it (...) has shifted upwards. As a consequence, principles of need on their most reasonable interpretations can be used to support publically funded cognitive enhancement. At least this is so, if broader aims than curing and ameliorating diseases are included in the goals of health care. We suggest that it would be plausible to see health care as accepting such broader goals already today. (shrink)

Ethical dilemmas are common in the neonatal intensive care setting. The aim of the present study was to investigate the opinions of Swedish physicians and the general public on treatment decisions regarding a newborn with severe brain damage. We used a vignette-based questionnaire which was sent to a random sample of physicians (n = 628) and the general population (n = 585). Respondents were asked to provide answers as to whether it is acceptable to discontinue ventilator treatment, and when it (...) actually is discontinued whether or not it was acceptable to use drugs which hasten death unintentionally or intentionally. The response rate was 67 % of physicians and 46 % of the general population. A majority of both physicians [56 % (CI 50–62)] and the general population [53 % (CI 49–58)] supported arguments for withdrawing ventilator treatment. A large majority in both groups supported arguments for alleviating the patient’s symptoms even if the treatment hastened death, but the two groups display significantly different views on whether or not to provide drugs with the additional intention of hastening death, although the difference disappeared when we compared subgroups of those who were for or against euthanasia-like actions. The study indicated that physicians and the general population have similar opinions regarding discontinuing life-sustaining treatment and providing effective drugs which might unintentionally hasten death but seem to have different views on intentions. The results might be helpful to physicians wanting to examine their own intentions when providing adequate treatment at the end of life. (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.

Randomized and double-blind clinical trials are widely regarded as the most reliable way of studying the effects of medical interventions. According to received wisdom, if a new drug or treatment is to be accepted in clinical practice, its safety and efficacy must first be demonstrated in such trials. For ethical and scientific reasons, it is generally considered necessary to monitor a trial in various ways as it proceeds and to analyze data as they accumulate. Monitoring and interim analyses are often (...) conducted by a so-called data monitoring committee (DMC), a group of experts independent of both sponsors and investigators. On the basis of DMC recommendations, sponsors sometimes decide to discontinue trials .. (shrink)

Slippery-slope arguments typically question a course of action by estimating that it will end in misery once the first unfortunate step is taken. Previous studies indicate that estimations of the long-term consequences of certain debated actions, such as legalizing physician-assisted suicide, may be strongly influenced by tacit personal values. In this paper, we suggest that to the extent that slippery-slope arguments rest on estimations of future events, they may be mere rationalizations of personal values. This might explain why there are (...) proponents even for strikingly poor slippery-slope arguments. (shrink)

In a Swedish setting physicians are unlikely to give explicitly paternalistic reasons when asked about their attitudes towards patients’ involvement in decision-making. There is considerable risk that they will disguise their paternalism by giving ‘socially correct answers’. We suggest that disguised paternalism can be revealed with the help of indexes based on certain responses in postal questionnaires. The indexes were developed using material from a study examining attitudes of Swedish physicians to physician-assisted suicide (PAS). Apart from being asked about their (...) attitudes, they were asked to prioritise between different arguments for and against PAS. One argument for PAS was: “PAS should be permitted out of respect for patients’ autonomy”. One argument against PAS was: “PAS should not be permitted since the non-maleficence principle in this case takes precedence over respecting patients’ autonomy”. Responses to the latter argument formed the cornerstone of a disguised-paternalism index, while an autonomy index was based on answers to the former argument. Applying our indexes to data from the PAS survey, we found that female GPs, surgeons, and older male physicians were least paternalistic. Among female physicians one finds both the most autonomy-respecting groups (female surgeons and GPs) and the least autonomy-respecting groups (female oncologists and psychiatrists); together with older male physicians in general, female GPs are the group displaying least disguised paternalism. We suggest that questionnaires exploring paternalism might be improved by including case-specific questions or statements by which to explore disguised paternalism. Here our indexes might be useful tools. (shrink)

This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the “index-person,” is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.The index-person can have several reasons to take an interest in obtaining her genetic information. She may want to know if she has a genetic predisposition for a disorder in order to take (...) measures for preventing its development. Even if there are no preventive measures, as is the case with Huntington's disease, for instance, she may still want to know whether she has the mutation, in order to adjust her future plans. These interests that an individual may have in obtaining genetic information have been used to argue in favour of a right to know. (shrink)

Obtaining and sharing genetic information when there is a potential conflict of interest between patients and their relatives give rise to two questions. Do we have a duty to find out our genetic predispositions for disease for the sake of our relatives, or do we have a right to remain ignorant? Do we have a duty to disclose our known genetic predispositions for disease to our relatives? I argue that the answer to both questions is yes, but to a lesser (...) extent than sometimes claimed. (shrink)

The aim of the present study was to corroborate or undermine a previously presented conjecture that physicians’ estimations of others’ opinions are influenced by their own opinions. We used questionnaire based cross-sectional design and described a situation where an imminently dying patient was provided with alleviating drugs which also shortened life and, additionally, were intended to do so. We asked what would happen to physicians’ own trust if they took the action described, and also what the physician estimated would happen (...) to the general publics’ trust in health services. Decrease of trust was used as surrogate for an undesirable action. The results are presented as proportions with a 95 % Confidence Interval. Statistical analysis was based on inter-rater agreement -test as well as χ2 test and Odds Ratio with 95 % CI. We found a moderate inter-rater agreement between what would happen with the physicians’ own trust in healthcare and their estimations of what would happen with the general population’s trust. We identified a significant difference between being pro et contra the treatment with double intentions and the estimation of the general population’s trust. Focusing on either decreasing or increasing own trust and being pro or contra the action we identified a strong association [OR 79 ]. Although the inter-rater agreement in the present study was somewhat weaker compared to a study about the explicit use of the term ‘physicians assisted suicide’ we found that our hypothesis—physicians’ estimations of others’ opinions are influenced by their own opinions—was corroborated. This might have implications in research as well as in clinical decision-making. We suggest that Merton’s ideal of disinterestedness should be highlighted. (shrink)

Luck egalitarianism, a theory of distributive justice, holds that inequalities which arise due to individuals’ imprudent choices must not, as a matter of justice, be neutralized. This article deals with the possible application of luck egalitarianism to the area of health care. It seeks to investigate whether the ethos of luck egalitarianism can be operationalized to the point of informing health care policy without straying from its own ideals. In the transition from theory to practise, luck egalitarianism encounters several difficulties. (...) We argue that the charge of moral arbitrariness can, at least in part, be countered by our provided definition of “imprudent actions” in the health area. We discuss the choice for luck egalitarianism in health care between ex ante and ex post policy approaches, and show how both approaches are flawed by luck egalitarianism’s own standards. We also examine the problem of threshold setting when luck egalitarianism is set to practise in health care. We argue that wherever policy thresholds are set, luck egalitarianism in health care risks pampering the imprudent, abandoning the prudent or, at worst, both. Furthermore, we claim that moves to mitigate these risks in turn diminish the normative importance of the ethos of luck egalitarianism to policy. All in all, our conclusion is that luck egalitarianism cannot be consistently applied as a convincing and relevant normative principle in health care policy. (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)

The main causes of suicide and how suicide could and should be prevented are ongoing controversies in the scientific literature as well as in public media. In the bill on public health from 2008, the Swedish Parliament adopted an overarching “Vision Zero for Suicide” and nine strategies for suicide prevention. However, how the VZ should be interpreted in healthcare is unclear. The VZ has been criticized both from a philosophical perspective and against the background of clinical experience and alleged empirical (...) claims regarding the consequences of regulating suicide prevention. This study is part of a larger research project in medical ethics with the overarching aim to explore whether the VZ is ethically justifiable. The aim is to enrich the normative discussion by investigating empirically how the VZ is perceived in healthcare. Interviews based on a semi-structured interview guide were performed with 12 Swedish psychiatrists. The interviews were analysed with descriptive qualitative content analysis aiming for identifying perceptions of the Vision Zero for Suicide as well as arguments for and against it. Though most of the participants mentioned at least some potential benefit of the Vision Zero for Suicide, the overall impression was a predominant skepticism. Some participants focused on why they consider the VZ to be unachievable, while others focused more on its potential consequences and normative implications. The VZ was perceived to be impossible to realize, nonconstructive or potentially counterproductive, and undesirable because of potential conflicts with other values and interests of patients as well as the general public. There were also important notions of the VZ having negative consequences for the working conditions of psychiatrists in Sweden, in increasing their work-related anxiety and thwarting the patient-physician relationship. (shrink)

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)

The aim of the present study was to compare and examine how medical students on term one and nine understand and adopt ideas and reasoning when estimating death-causes. Our hypothesis was that compared to students in the beginning of their medical curriculum, term nine students would be more inclined to adopt ideas about causality that allows physicians to alleviate an imminently dying patient, without being suspected for manslaughter—a practice referred to as proficiency creativity. We used a questionnaire containing two similar (...) cases describing an imminently dying patient who receive a drug in order to treat seizures. The treatment has the foreseen effect of shortening the patient’s life. In one version of the vignette the patient dies immediately and in the other one the patient dies 5 h after having received the drug. We asked medical students in their first term (n = 149) and ninth term (n = 106) to fill in the two randomly distributed questionnaires. We used a χ2 test to examine our hypothesis and choose as significance level 0.05. A majority of term-one students (53 %) stated that the patient died because of the provided drugs when dying immediately after and 32 % stated it when the patient died 5 h after providing the drug. The difference was significant (p = 0.007). A minority of term-nine students (20 vs. 16 %) stated the patient died because of the provided drug. The difference was not significant. The study indicates that term-nine students have espoused the idea that death-causes in such cases should always be classified as the underlying disease—even though another straightforward explanation could be the drug provided. To clinicians this might be a proficiency-creative strategy for managing a difficult legal dilemma. As hypothetical explanation we suggest that experienced clinicians might have transformed a normative issue of shortening life into an empirical issue about death-causes and tacitly transferred this strategy to term-nine students. If our hypothesis is supported by future studies, this kind of transferring proficiency creativity tacitly might impede changing the Penal Code even though it may be needed. (shrink)

We have examined healthcare staff attitudes of toward a blogging cancer patient who publishes critical posts about her treatment and their possible effect on patient-staff relationships and treatment decisions. We used two versions of a questionnaire containing a vignette based on a modified real case involving a 39-year-old cancer patient who complained on her blog about how she was encountered and the treatment she received. Initially she was not offered a new, and expensive treatment, which might have influenced her perception (...) of further encounters. In one version of the vignette, the team decides to put extra effort into both encounters and offers the expensive new cancer treatment. In the other version, the team decides to follow the clinic’s routine to the letter. Subsequently, blog postings became either positive or negative in tone. We also divided participants into value-neutral and value-influenced groups by asking how their trust in healthcare would be affected if the team’s suggestion were followed. A total of 56 % of the respondents faced with a team decision to ‘do something-extra’ in encounters would act in accordance with this ambition. Concerning treatment, 32 % would follow the team’s decision to offer a new and expensive treatment. A large majority of those who received the “follow-routine” version agreed to do so in encountering [94 % ]. Similar proportions were found regarding treatment [86 % ]. A total of 83 % of the value-neutral participants who received the “do-something-extra” version stated that they would act as the team suggested regarding encounters, while 57 % would do so in regard to treatment. Among the value-influenced participants who received the “do-something-extra” version, 45 % stated that they would make an extra effort to accommodate the patient and her needs, while the proportion for treatment was 22 %. Among those who had received the “follow-routine” version, a large majority agreed, and no difference was indicated between the value-neutral and the value-influenced participants. The present study indicates that healthcare staff is indeed influenced by reading a patient’s critical blog entries, largely regarding encounters, but also concerning treatment is concerned. Value-neutral healthcare personnel seem to exhibit a pragmatic attitude and be more inclined to heed and respond to a patient whose criticism may well be warranted. The study also indicates that healthcare staff is partly positive or negative to future blogging patients depending on how the issue has been framed. For future research we suggest as a bold hypothesis that the phrase “clinical routine” might conceal power aspects masquerading as adopted ethical principles. (shrink)

Aims The aim of this study was to examine if it is plausible to interpret the appearance of shame in a Swedish healthcare setting as a reaction to having one's honour wronged. Methods Using a questionnaire, we studied answers from a sample of long-term sick-listed patients who had experienced negative encounters (n=1628) and of these 64% also felt wronged. We used feeling wronged to examine emotional reactions such as feeling ashamed and made the assumption that feeling shame could be associated (...) with having one's honour wronged. In statistical analyses relative risks (RRs) were computed, adjusting for age, sex, disease-labelling, educational levels, as well as their 95% CI. Results Approximately half of those who had been wronged stated that they also felt shame and of those who felt shame, 93% (CI 91 to 95) felt that they had been wronged. The RR was 4.5 (CI 3.0 to 6.8) for shame when wronged. This can be compared with the other emotional reactions where the RRs were between 1.1 (CI 0.9 to 1.3)–1.4 (CI 1.2 to 1.7). We found no association between country of birth and feeling shame after having experienced negative encounters. Conclusions We found that the RR of feeling shame when wronged was significantly higher compared with other feelings. Along with theoretical considerations, and the specific types of negative encounters associated with shame, the results indicate that our research hypothesis might be plausible. We think that the results deserve to be used as point of departure for future research. (shrink)

Introduction Compulsory care is controversial, since respect for the patient’s autonomy is a standard requirement in health care. Many psychiatrists have experienced that patients with borderline personality syndrome sometimes demand compulsory care for themselves in order not to exert self-harm—like Ulysses contracts. The aim of this study was to examine the possible existence and extent of borderline personality syndrome-patient demands for Ulysses contracts regarding compulsory care in acute psychiatry, and how external influences and demands could affect the caregivers’ decisions about (...) compulsory care. Method An anonymous questionnaire, with three questions with fixed answers, was distributed to 42 licensed medical doctors on call at the psychiatric emergency unit in the city of Stockholm. Thirty-three questionnaires were answered, giving a response rate of 79%. Results Ninety-four percent of the respondents recognized the phenomenon of borderline personality syndrome patients requesting compulsory care, 21% stated that this request had affected their clinical decision, and 55% had used compulsory care for other reasons than the patient’s best interest. Discussion The results indicate that compulsory care is sometimes given in the form of Ulysses contracts for borderline personality syndrome patients. Also, compulsory care is sometimes used for other reasons than the borderline personality syndrome patient’s best interest. Psychological mechanisms affect the decisions of both patients and caregivers. More research should be done concerning to whom, why, and with what consequences compulsory care is prescribed. (shrink)

Hymen reconstruction is a controversial measure performed to help young females under threat of honour-related violence. Official guidelines often reject offering hymen reconstructions. On the other hand, extraordinary measures in order to enable operations of Jehovah’s Witnesses who want a bloodless operation in order to avoid religiously related sanctions are often considered praiseworthy. The aim is thus to examine whether or not there are relevant differences between these two measures.

Analogously to Kuhn’s and Hanson’s understanding of observation as theory-impregnated, we try to test the hypothesis that observation and interpretation might also be value-impregnated. We use a written examination task for medical students who were asked to read and interpret a text where the authors provide arguments pro et contra euthanasia. Afterwards the students were asked to provide their own reflected opinion on the issue. We found that medical students who were against and indecisive provided interpretations of the text which (...) accorded with their own reflected opinions (P = 0.02), indicating that their interpretations were influenced by their own values. When including those who were pro euthanasia, the association was no longer significant. Although the present investigation was a small pilot-study, we obtained partial support for our hypothesis and have adjusted it to read as follows: observations and interpretations might be value-impregnated for respondents who have rather strong value-based attitudes. We think the adjusted hypothesis deserves to be further examined. (shrink)

Assessments of quality in healthcare often focus on treatment outcome or patient safety, but rarely acknowledge the importance of patients’ encounters with healthcare personnel. The aim of this study was to gain an improved understanding of negative experiences of healthcare encounters by investigating experiences of the general population. A questionnaire was distributed to a randomly selected sample population of 1484 inhabitants in Stockholm County, Sweden. The material was subjected to conventional content analysis. Seventeen different types of complaint about negative encounters (...) were identified, including unpleasant behavior, not being listened to, inadequate information, and discrimination. Two possible underlying explanations are discussed; structural factors relating to the organization and allocation of healthcare, and individual factors relating to the staff’s attitudes and professional practice. The results indicate that different strands of actions are needed to reduce patients’ negative experiences of encounters in healthcare, depending on the setting as well as on which of the two factors predominates. (shrink)

The background of this paper is the ongoing dismantling of the social insurance systems in favour of commercialisation and privatisation of insurances needed for illness, old age and premature death. This combined with the increased possibility of using genetic testing for differentiating personal insurance premiums has the potentiality of creating a ‘genetic proletariat’ — an uninsurable high-risk population. The common way of handling this problem in Sweden, and many other developed countries around the North Atlantic, has been to regulate insurance (...) companies’ right to ask for and use genetic information in various ways. There is a distinction between partial regulation and total regulation. I will argue that these forms of regulation probably will have adverse consequences given the dismantling of collective social insurance systems. If this is convincing, a better way to solve the problem of an uninsurable high-risk population is to resurrect the collective, obligatory insurance systems in which the individual risk profile does not constitute a basis for premium determination. Both arguments cast in terms of consequences and justice render support for this conclusion. (shrink)

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington’s disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several closely (...) connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation. (shrink)

In many countries, there are health care initiatives to make smokers give up smoking in the peri-operative setting. There is empirical evidence that this may improve some, but not all, operative outcomes. However, it may be feared that some support for such policies stems from ethically questionable opinions, such as paternalism or anti-smoker sentiments. This study aimed at investigating the support for a policy of smoking cessation prior to surgery among Swedish physicians and members of the general public, as well (...) as the reasons provided for this. A random sample of general practitioners and orthopaedic surgeons as well as members of the general public received a mail questionnaire. It contained a vignette case with a smoking 57-year old male farmer with hip osteoarthritis. The patient had been recommended hip replacement therapy, but told that in order to qualify for surgery he needed to give up smoking four weeks prior to and after surgery. The respondents were asked whether making such qualifying demands is acceptable, and asked to rate their agreement with pre-set arguments for and against this policy. Response rates were 58.2% among physicians and 53.8% among the general public. Of these, 83.9% and 86.6%, respectively, agreed that surgery should be made conditional upon smoking cessation. Reference to the peri-operative risks associated with smoking was the most common argument given. However, there was also strong support for the argument that such a policy is mandated in order to achieve long term health gains. There is strong support for a policy of smoking cessation prior to surgery in Sweden. This support is based on considerations of peri-operative risks as well as the general long term risks of smoking. This study indicates that paternalistic attitudes may inform some of the support for peri-operative smoking cessation policies and that at least some respondents seem to favour a “recommendation strategy” vis-à-vis smoking cessation prior to surgery rather than a “requirement strategy”. The normative reasons speak in favour of the “recommendation strategy”. (shrink)

Background Genetic testing is moving from targeted investigations of monogenetic diseases to broader testing that may provide more information. For example, recent health economic studies of genetic testing for an increased risk of breast cancer suggest that it is associated with higher cost-effectiveness to screen for pathogenic variants in a seven gene panel rather than the usual two gene test for variants in BRCA1 and BRCA2. However, irrespective of the extent to which the screening of the panel is cost-effective, there (...) may be ethical reasons to not screen for pathogenic variants in a panel, or to revise the way in which testing and disclosing of results are carried out. Main text In this paper we discuss the ethical aspects of genetic testing for an increased risk of breast cancer with a special focus on the ethical differences between screening for pathogenic variants in BRCA1/2 and a seven gene panel. The paper identifies that the panel increases the number of secondary findings as well as the number of variants of uncertain significance as two specific issues that call for ethical reflection. Conclusions We conclude that while the problem of handling secondary findings should not be overstated with regard to the panel, the fact that the panel also generate more variants of uncertain significance, give rise to a more complex set of problems that relate to the value of health as well as the value of autonomy. Therefore, it is insufficient to claim that the seven gene panel is preferable by only referring to the higher cost effectiveness of the panel. (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)

During the last two decades, neonatal screening in Europe and North America has expanded substantially. This article examines two recent suggestions for expanding neonatal screening: severe combined immunodeficiency and X-linked adrenoleukodystrophy. With reference to well-established risk-benefit based rationales for screening, it is argued that the case for introducing SCID in neonatal screening is considerably stronger than for introducing X-ALD. For instance, the majority of those screened for X-ALD most likely have a negative risk-benefit ratio of screening: they develop milder symptoms (...) or perhaps no symptoms at all, while still being monitored for a long time. This argument is used as a vehicle for making some general points regarding justified expansions of neonatal screening. First, when considering the expansion of neonatal screening, we should look at a condition specific case-by-case basis. Moreover, future expansions of neonatal screening should stick to the well-established rationales for screening while avoiding risk-benefit slippage. Otherwise, more strict procedures of informed consent are warranted in neonatal screening, procedures that, in the end, risk undermining the benefits of current neonatal screening programmes. (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)

AimsTo examine attitudes towards physician-assisted suicide among physicians in Sweden and compare these with the results from a similar cross-sectional study performed in 2007.ParticipantsA random selection of 250 physicians from each of six specialties and all 127 palliative care physicians in Sweden were invited to participate in this study.SettingA postal questionnaire commissioned by the Swedish Medical Society in collaboration with Karolinska Institute in Stockholm. ResultsThe total response rate was 59.2%. Slightly fewer than half [47.1% ] of the respondents from the (...) six specialties accepted PAS, which is significantly more than accepted PAS in the 2007 study [34.9% ]. Thirty-three percent of respondents were prepared to prescribe the needed drugs. When asked what would happen to the respondent’s own trust in healthcare, a majority [67.1% ] stated that legalizing PAS would either not influence their own trust in healthcare, or that their trust would increase. This number is an increase compared to the 2007 survey, when just over half [51.9% ] indicated that their own trust would either not be influenced, or would increase.ConclusionsThe study reveals a shift towards a more accepting attitude concerning PAS among physicians in Sweden. Only a minority of the respondents stated that they were against PAS, and a considerable proportion reported being prepared to prescribe the needed drugs for patient self-administration if PAS were legalized. (shrink)

BackgroundIn the initial phase of the Covid-19 pandemic, difficult decisions had to be made on the allocation of testing resources. Similar situations can arise in future pandemics. Therefore, careful consideration of who should be tested is an important part of pandemic preparedness. We focus on four ethical aspects of that problem: how to prioritize scarce testing resources, the regulation of commercial direct-to-consumer test services, testing of unauthorized immigrants, and obligatory testing.Main textThe distribution of scarce resources for testing: We emphasize the (...) use of needs-based criteria, but also acknowledge the importance of choosing a testing strategy that contributes efficiently to stopping the overall spread of the disease. Commercial direct-to-consumer test services: Except in cases of acute scarcity, such services will in practice have to be allowed. We propose that they should be subject to regulation that ensures test quality and adequate information to users. Testing of unauthorized immigrants, their children and other people with unclear legal status: Like everyone else, these individuals may be in need of testing, and it is in society’s interest to reach them with testing in order to stop the spread of the disease. A society that offers comprehensive medical services to unauthorized immigrants is in a much better position to reach them in a pandemic than a society that previously excluded them from healthcare. Obligatory testing: While there are often strong reasons for universal testing in residential areas or on workplaces, there are in most cases better ways to achieve testing coverage than to make testing mandatory.ConclusionIn summary, we propose decision-making primarily based on needs-based criteria, strict regulation but not prohibition of direct-to-consumer test services, test services offered to unauthorized immigrants, preferably as part of comprehensive medical services, and broad outreach of testing services whenever possible, but in general not obligatory testing. (shrink)