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Background: Clinical research nurses (CRNs) have first-hand experience with ethical challenges and play a crucial role in upholding ethical conduct and adherence to the principles of informed consent in clinical research. This study explores the ethical challenges encountered by CRNs in the process of obtaining informed consent for clinical research., Methods: A qualitative exploratory design. Semistructured interviews (n = 14) were conducted with diverse CRNs in Sweden. These CRNs covered a wide range of research fields, including pharmaceutical and academic studies, interventions, and observational research, spanning different trial phases, patient categories, and medical conditions. The interviews were analysed using inductive qualitative content analysis., Results: The analysis identified three main categories: (i) threats to voluntariness, (ii) measures to safeguard voluntariness, and (iii) questionable exclusion of certain groups. CRNs face challenges due to time constraints, rushed decisions, information overload, and excessive reliance on physicians' recommendations. Overestimating therapeutic benefits in stages of advanced illness emerged as a risk to voluntariness. CRNs outlined proactive solutions, such as allowing ample decision-making time and offering support, especially for terminally ill patients. Concerns were also voiced about excluding certain demographics, such as those with language barriers or cognitive impairments., Conclusions: In conclusion, upholding ethical research standards requires recognising various factors affecting patient voluntariness. Researchers and CRNs should prioritise refining the informed consent process, overcoming participation challenges, and aligning scientific rigour with personalised care. Additionally, a concerted effort is vital to meet the diverse needs of patient populations, including equitable inclusion of individuals with language barriers or cognitive limitations in clinical studies. These findings have significant implications for enhancing the ethics of clinical research and advancing person-centred care., (© 2023. The Author(s).)

Background: Health care workers (HCWs) are susceptible to moral stress and distress when they are faced with morally challenging situations where it is difficult to act in line with their moral standards. In times of crisis, such as disasters and pandemics, morally challenging situations are more frequent, due to the increased imbalance between patient needs and resources. However, the concepts of moral stress and distress vary and there is unclarity regarding the definitions used in the literature. This study aims to map and analyze the descriptions used by HCWs regarding morally challenging situations (moral stress) and refine a definition through conceptual analysis., Methods: Qualitative data were collected in a survey of 16,044 Swedish HCWs who attended a COVID-19 online course in autumn 2020. In total, 643 free-text answers with descriptions of moral stress were analyzed through content analysis., Results: Three themes emerged from the content analysis (1) "Seeing, but being prevented to act; feeling insufficient/inadequate and constrained in the profession," (2) "Someone or something hindered me; organizational structures as an obstacle," and (3) "The pandemic hindered us; pandemic-related obstacles." The three themes correspond to the main theme, "Being prevented from providing good care.", Discussion: The main theme describes moral stress as various obstacles to providing good care to patients in need and acting upon empathic ability within the professional role. The themes are discussed in relation to established definitions of moral stress and are assessed through conceptual analysis. A definition of moral stress was refined, based on one of the established definitions., Conclusions: On the basis of the study results and conceptual analysis, it is argued that the presented definition fulfils certain conditions of adequacy. It is essential to frame the concept of moral stress, which has been defined in different ways in different disciplines, in order to know what we are talking about and move forward in developing prevention measures for the negative outcomes of this phenomenon., (© 2023. The Author(s).)

Background: Disasters are chaotic events with healthcare needs that overwhelm available capacities. Disaster healthcare responders must make difficult and swift choices, e.g., regarding who and what to prioritize. Responders dealing with such challenging choices are exposed to moral stress that might develop into moral distress and affect their wellbeing. We aimed to explore how deployed international disaster healthcare responders perceive, manage and are affected by moral challenges., Methods: Focus groups discussions were conducted with 12 participants which were Swedish nurses and physicians with international disaster healthcare experience from three agencies. The transcribed discussions were analyzed using content analysis., Results: We identified five interlinked themes on what influenced perceptions of moral challenges; and how these challenges were managed and affected responders' wellbeing during and after the response. The themes were: "type of difficult situation", "managing difficult situations", "tools and support", "engagement as a protective factor", and "work environment stressors as a risk factor. Moral challenges were described as inevitable and predominant when working in disaster settings. The responders felt that their wellbeing was negatively affected depending on the type and length of their stay and further; severity, repetitiveness of encounters, and duration of the morally challenging situations. Responders had to be creative and constructive in resolving and finding their own support in such situations, as formal support was often either lacking or not considered appropriate., Conclusion: The participating disaster healthcare responders were self-taught to cope with both moral challenges and moral distress. We found that the difficult experiences also had perceived positive effects such as personal and professional growth and a changed worldview, although at a personal cost. Support considered useful was foremost collegial support, while psychosocial support after deployment was considered useful provided that this person had knowledge of the working conditions and/or similar experiences. Our findings may be used to inform organizations' support structures for responders before, during and after deployment., (© 2022. The Author(s).)

Background: We aim to further develop an index for detecting disguised paternalism, which might influence physicians' evaluations of whether or not a patient is decision-competent at the end of life. Disguised paternalism can be actualized when physicians transform hard paternalism into soft paternalism by questioning the patient's decision-making competence., Methods: A previously presented index, based on a cross-sectional study, was further developed to make it possible to distinguish between high and low degrees of disguised paternalism using the average index of the whole sample. We recalculated the results from a 2007 study for comparison to a new study conducted in 2020. Both studies are about physicians' attitudes towards, and arguments for or against, physician-assisted suicide., Results: The 2020 study showed that geriatricians, palliativists, and middle-aged physicians (46-60 years old) had indices indicating disguised paternalism, in contrast with the results from the 2007 study, which showed that all specialties (apart from GPs and surgeons) had indices indicating high degrees of disguised paternalism., Conclusions: The proposed index for identifying disguised paternalism reflects the attitude of a group towards physician assisted suicide. The indices make it possible to compare the various medical specialties and age groups from the 2007 study with the 2020 study. Because disguised paternalism might have clinical consequences for the rights of competent patients to participate in decision-making, it is important to reveal disguised hard paternalism, which could masquerade as soft paternalism and thereby manifest in practice. Methods for improving measures of disguised paternalism are worthy of further development., (© 2021. The Author(s).)

Aims: To examine attitudes towards physician-assisted suicide (PAS) among physicians in Sweden and compare these with the results from a similar cross-sectional study performed in 2007., Participants: A random selection of 250 physicians from each of six specialties (general practice, geriatrics, internal medicine, oncology, surgery and psychiatry) and all 127 palliative care physicians in Sweden were invited to participate in this study., Setting: A postal questionnaire commissioned by the Swedish Medical Society in collaboration with Karolinska Institute in Stockholm., Results: The total response rate was 59.2%. Slightly fewer than half [47.1% (95% CI 43.7-50.5)] of the respondents from the six specialties accepted PAS, which is significantly more than accepted PAS in the 2007 study [34.9% (95% CI 31.5-38.3)]. 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% (95% CI 63.9-70.3)] 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% (95% CI 48.0-55.2)] indicated that their own trust would either not be influenced, or would increase., Conclusions: The 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.

Background: In 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 Text: The 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., Conclusion: In summary, we propose (1) decision-making primarily based on needs-based criteria, (2) strict regulation but not prohibition of direct-to-consumer test services, (3) test services offered to unauthorized immigrants, preferably as part of comprehensive medical services, and (4) broad outreach of testing services whenever possible, but in general not obligatory testing.

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.

Background: We designed this observational study to investigate the level of patients' and doctors' ratings of patient-centred aspects of the primary care consultation., Methods: Questionnaire study with patients and doctors. Consecutive patients in a primary care setting and 16 doctors responding post visit. Results are presented as proportions with 95% confidence intervals., Results: 411 questionnaires, 223 from patients and 188 from doctors, covered 251 consultations. Both patients and doctors gave the highest possible estimations on the aspects of patient-centred communication and satisfaction less frequently when the patient had other reasons for visit than purely somatic. Unlike the doctors' estimations, the frequency of highest possible estimations in patient responses dropped if the patients had two to six reasons for visit rather than one. Among the six patient-centred aspects, both patients and doctors gave the highest possible estimation least frequently on the aspect of shared decision-making., Conclusion: The results suggest that the nature of the reason, as well as the number of reasons for visit, interferes with the doctors' level of patient-centred communication. Our results furthermore confirm the findings of previous studies that doctors insufficiently involve patients in their care.

Background: 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 (Prop 2007/08:110), the Swedish Parliament adopted an overarching "Vision Zero for Suicide" (VZ) 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., Methods: 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., Results: 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., Conclusions: 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.

Background: 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., Methods: A random sample of general practitioners and orthopaedic surgeons (n = 795) as well as members of the general public (n = 485) 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., Results: 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., Conclusions: 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".

Background: 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., Methods: 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 (regarding personal values) by asking how their trust in healthcare would be affected if the team's suggestion were followed., Results: A total of 56 % (95 % CI: 51-61) of the respondents faced with a team decision to 'do something-extra' in encounters would act in accordance with this ambition. Concerning treatment, 32 % (95 % CI: 28-38) 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 % (95 % CI: 91-97)]. Similar proportions were found regarding treatment [86 % (95 % CI: 82-90)]. A total of 83 % (95 % CI: 76-91) 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 % (95 % CI: 47-67) would do so in regard to treatment. Among the value-influenced participants who received the "do-something-extra" version, 45 % (95 % CI: 38-51) stated that they would make an extra effort to accommodate the patient and her needs, while the proportion for treatment was 22 % (95 % CI: 16-27). 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., Conclusion: 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.

Background: Involuntary 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., Methods: In-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., Results: The 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., Conclusions: Involuntary 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.

Background: 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., Methods: Eight in-depth interviews were conducted with Swedish psychiatrists. The interviews were analysed according to descriptive qualitative content analysis in which categories and sub-categories were distilled from the material., Results: Decision-making capacity was seen as dependent on understanding, insight, evaluation, reasoning, and abilities related to making and communicating a choice. However, also the actual content of the decision was held as relevant. There was an ambivalence regarding the relationship between psychiatric disorders and capacity and a tendency to regard psychiatric patients who made unwise treatment decisions as decisionally incapable. However, in cases relating to patients with somatic illnesses, the assumption was rather that patients who made unwise decisions were imprudent but yet decisionally capable., Conclusions: The respondents' conceptions of decision-making capacity were mainly in line with standard theories. However, the idea that capacity also includes aspects relating to the content of the decision clearly deviates from the standard view. The tendency to regard imprudent choices by psychiatric patients as betokening lack of decision-making capacity differs from the view taken of such choices in somatic care. This difference merits further investigations.

Background: To investigate whether Swedish physicians, contrary to Swedish health care policy, employ considerations of patient responsibility for illness when rationing expensive treatments., Methods: A random sample of oncologists and pulmonologists made up the main study-group (n = 296). A random sample of GPs (n = 289) and participants from the general population (n = 513) was used as contrast group. The participants randomly received one version of a questionnaire containing a case description of a terminally ill lung cancer patient. The two versions differed in only one aspect: in one version the patient was a smoker and in the other a non-smoker. The main questions were whether to offer a novel, expensive and marginally life-prolonging treatment and whether the patient could be held responsible for her illness. The quantitative data was analysed using Chi2-tests and comments were analysed using content analysis., Results: Among oncologists and pulmonologists, 78% (95% CI: 72-85) would offer the treatment to the non-smoker and 66% (95% CI: 58-74) to the smoker (Chi-2 = 5.4, df = 1, p = 0.019). Among the GPs, 69% (95% CI: 61-76) would treat the non-smoker and 56% (95% CI: 48-64) the smoker (Chi-1 = 4.9, df = 1 and p = 0.026). Among the general population the corresponding proportions were 84% (95% CI: 79-88) and 69% (95% CI: 63-74)., Conclusion: This study indicates that applying an experimental design allowed us to go beyond the official norms and to show that, compared to a smoking patient, both the general population and physicians are more inclined to treat a non-smoking patient. This clearly runs counter to the official Swedish health care norms. It also seems to run counter to the fact that among the physicians studied, there was no association between finding the patient responsible for her disease and the inclination to treat her. We think these paradoxical findings merit further studies.

Background: 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., Discussion: We identified twelve potential differences. One difference could be considered relevant (patient-safety), but in favour of hymenoplastic operations., Summary: Since we did not identify enough relevant differences to justify offering bloodless operations to Jehovah's Witnesses but not offering hymen reconstruction due to honour-related norms, we conclude that these two groups of patients should be treated equally. This means that neither of the patient groups should be offered these extraordinary operations or that both groups of patients should be offered such operations. Similarly, there are no reasons for judging those who perform the operations differently.

Personalized nutrition has the potential to enhance individual health control. It could be seen as a means to strengthen people's autonomy as they learn more about their personal health risks, and receive dietary advice accordingly. We examine in what sense personalized nutrition strengthens or weakens individual autonomy. The impact of personalized nutrition on autonomy is analyzed in relation to responsibility and trustworthiness. On a societal level, individualization of health promotion may be accompanied by the attribution of extended individual responsibility for one's health. This constitutes a dilemma of individualization, caused by a conflict between the right to individual freedom and societal interests. The extent to which personalized nutrition strengthens autonomy is consequently influenced by how responsibility for health is allocated to individuals. Ethically adequate allocation of responsibility should focus on prospective responsibility and be differentiated with regard to individual differences concerning the capacity of adults to take responsibility. The impact of personalized nutrition on autonomy also depends on its methodological design. Owing to the complexity of information received, personalized nutrition through genetic testing (PNTGT) is open to misinterpretation and may not facilitate informed choices and autonomy. As new technologies, personalized nutrition and PNTGT are subject to issues of trust. To strengthen autonomy, trust should be approached in terms of trustworthiness. Trustworthiness implies that an organization that develops or introduces personalized nutrition can show that it is competent to deal with both the technical and moral dimensions at stake and that its decisions are motivated by the interests and expectations of the truster.

Background: The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care., Discussion: We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why., Conclusions: The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.