Patients with borderline personality disorder and the effects of compulsory admissions on self-harm behaviour: a questionnaire study.

BACKGROUND: Previous research on patients with borderline personality disorder (BPD) has indicated negative effects, including increased suicidality, from long hospital admissions and paternalism. Still, long-term compulsory admissions have been reported to occur regularly. Less is known about how healthcare personnel perceives these admissions and to what extent they think the use of compulsory care can be diminished. This study addresses those questions to make care more beneficial. METHODS: A questionnaire study, the respondents being nurses and psychiatric aides employed at psychiatric hospital wards in Sweden. The questionnaire contained questions with fixed answers and room for comments. 422 questionnaires were distributed to 21 wards across Sweden, and the response rate was 66%. The data were analysed with descriptive statistics and qualitative descriptive content analysis. RESULTS: Most respondents experienced that more than a week's compulsory admission either increased (68%) or had no effect (26%) on self-harm behaviour. A majority (69%) considered the compulsory admissions to be too long at their wards, with detrimental effects on the patients. They also recognized several reasons for compulsory admissions without medical indication, like doctors' fear of complaints and patients' lack of housing. Also, patients sometimes demand compulsory care. Respondents recommended goal-oriented care planning, around three-day-long voluntary admissions, and better outpatient care to reduce compulsory hospital admissions. DISCUSSION: These findings imply that many BPD patients are regularly forced to receive psychiatric care that inadvertently can make them self-harm more. The respondents' comments can be used as a source when formulating clinical guidelines.

Trust and digital privacy in healthcare: a cross-sectional descriptive study of trust and attitudes towards uses of electronic health data among the general public in Sweden.

BACKGROUND: The ability of healthcare to protect sensitive personal data in medical records and registers might influence public trust, which in turn might influence willingness to allow healthcare to use such data. The aim of this study was to examine how the general public's trust relates to their attitudes towards uses of health data. METHODS: A stratified sample from the general Swedish population received a questionnaire about their willingness to share health data. Respondents were also asked about their trust in the management and protection of electronic health data. RESULTS: A large majority (81.9%) of respondents revealed high levels of trust in the ability of healthcare to protect electronic patient data. Good health was associated with significantly higher levels of trust compared to bad health. Respondents with low levels of trust were significantly less willing to allow personal data to be used for different purposes and were more inclined to insist on being asked for permission beforehand. Those with low levels of trust also perceived risks of unauthorized access to personal data to be higher and the likely damage of such unauthorized access worse, compared to those with high levels of trust. CONCLUSIONS: Trust in the ability of healthcare to protect electronic health is generally high in Sweden. Those with higher levels of trust are more willing to let their data be used, including without informed consent. It thus seems crucial to promote trust in order to be able to reap the benefits that digitalization makes possible through increased access and use of data in healthcare.

Hospital staff at most psychiatric clinics in Stockholm experience that patients who self-harm have too long hospital stays, with ensuing detrimental effects.

BACKGROUND: Previous research on patients who self-harm has indicated potential negative effects from long hospital stays. Yet, such care has been reported to occur regularly. We conducted this questionnaire study to investigate how hospital staff, who treat self-harming patients, experience the relation between lengths of stay and self-harm behaviour, and the motives for non-beneficial hospital stays. METHODS: The respondents of the questionnaire were nurses and mental health workers employed at public inpatient wards in Stockholm, treating patients who self-harm. The questionnaire contained questions with fixed answers and room for comments. A total of 304 questionnaires were distributed to 13 wards at five clinics, and the response rate was 63%. The data were analysed with descriptive statistics and qualitative descriptive content analysis. RESULTS: The results show that most staff experienced that more than a week's stay either increased (57%) or had no effect (33%) on self-harm behaviour. Most respondents at most clinics considered the stays to be too long at their wards, and that the stays could be reduced. The respondents recognized several reasons for non-beneficial hospital stays, like fear of suicidal behaviour and doctors' fear of complaints. Patients appearing as demanding or fragile were thought to be given more care than others. The respondents' comments confirmed the majority's experience of detrimental effects from longer hospital stays. CONCLUSIONS: A majority of the health care staff experienced that patients who self-harm often receive too long hospital stays, with detrimental effects, and they had experienced several non-medical reasons for such care.

Same, same, but different? A longitudinal, mixed-methods study of stability in values and preferences for future end-of-life care among community-dwelling, older adults.

BACKGROUND: End-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults' prioritizations and reasoning about values and preferences for future end-of-life care change over time. METHODS: Using a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5-12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants' reasoning about card choices were explored with longitudinal qualitative analysis. RESULTS: Stability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants' health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning. CONCLUSIONS: Longitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals' end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.

Dissemination, use, and impact of a community-based, conversational advance care planning intervention: ripple effects of the Swedish DöBra cards.

INTRODUCTION & AIM: Despite increasing interest in community-based advance care planning interventions, few studies investigate the societal impact of such initiatives. The DöBra cards, a Swedish adaptation of the GoWish cards, were first used for advance care planning conversations in a participatory action research project and later, due to popular demand, made available for purchase by the general public. We explore how the DöBra cards were disseminated and used publicly, to understand their impact in the community. METHODS: We used Ripple Effects Mapping to follow three dissemination ripples, based on interviews with 20 participants, analyzed with directed content analysis. FINDINGS: Key factors influencing dissemination of the DöBra cards included 'champions' with a mandate within their context or organization, policy documents including use of the cards, media coverage, and presentations of the cards in various settings. The DöBra cards were adapted for use individually and in groups in different private, professional, and organizational settings. Perceived benefits of the cards included acting as an icebreaker in initiating end-of-life conversations and having preformulated statements to reflect upon. Other positive experiences included discussions on different interpretations of card statements, thus opening new perspectives regarding end-of-life. The DöBra cards functioned both as means to raise end-of-life issues in different contexts, and as an end in themselves, for example, by facilitating advance care planning conversations for those with serious disease. Impact also included personal development and strengthening of private and professional relationships, with potential to affect end-of-life care. CONCLUSION: The broad dissemination of the DöBra cards influenced capacity-building in dealing with end-of-life issues in communities, as the topic of dying and death was brought to agendas in new contexts.

Willingness to Share yet Maintain Influence: A Cross-Sectional Study on Attitudes in Sweden to the Use of Electronic Health Data.

We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views are held by the general public, and what aspects matter for the willingness to let one's data be used not only for one's own care but also for other purposes. We found that while there is a broad willingness to let one's data be used, the possibility to influence that use is considered important. The study also indicated that when respondents are required to balance different interests, priority is typically given to compulsory schemes ensuring that data are available where needed, rather than voluntary participation and data protection. The policy implications to be drawn from this are not self-evident, however, since the fact that a majority has a certain attitude does not by itself determine the most adequate policy.

Who should be tested in a pandemic? Ethical considerations.

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.

How to Handle Co-authorship When Not Everyone's Research Contributions Make It into the Paper.

While much of the scholarly work on ethics relating to academic authorship examines the fair distribution of authorship credit, none has yet examined situations where a researcher contributes significantly to the project, but whose contributions do not make it into the final manuscript. Such a scenario is commonplace in collaborative research settings in many disciplines and may occur for a number of reasons, such as excluding research in order to provide the paper with a clearer focus, tell a particular story, or exclude negative results that do not fit the hypothesis. Our concern in this paper is less about the reasons for including or excluding data from a paper and more about distributing credit in this type of scenario. In particular, we argue that the notion 'substantial contribution', which is part of the International Committee of Medical Journal Editors (ICMJE) authorship criteria, is ambiguous and that we should ask whether it concerns what ends up in the paper or what is a substantial contribution to the research process leading up to the paper. We then argue, based on the principles of fairness, due credit, and ensuring transparency and accountability in research, that the latter interpretation is more plausible from a research ethics point of view. We conclude that the ICMJE and other organizations interested in authorship and publication ethics should consider including guidance on authorship attribution in situations where researchers contribute significantly to the research process leading up to a specific paper, but where their contribution is finally omitted.

Why unethical papers should be retracted.

The purpose of retracting published papers is to maintain the integrity of academic research. Recent work in research ethics has devoted important attention to how to improve the system of paper retraction. In this context, the focus has primarily been on how to handle fraudulent or flawed research papers and how to encourage the retraction of papers based on honest mistakes. Less attention has been paid to whether papers that report unethical research-for example, research performed without appropriate concern for the moral rights and interests of the research participants-should be retracted. The aim of this paper is to examine to what extent retraction policies of academic journals and publishers address retractions of unethical research and to discuss critically various policy options and the reasons for accepting them. The paper starts by reviewing retraction policies of academic publishers. The results show that many journals do not have explicit policies for how to handle unethical research. Against this background, we then discuss four normative arguments for why unethical research should be retracted. In conclusion, we suggest a retraction policy in light of our empirical and normative investigations.

Against Ulysses contracts for patients with borderline personality disorder.

Patients with borderline personality disorder (BPD) sometimes request to be admitted to hospital under compulsory care, often under the argument that they cannot trust their suicidal impulses if treated voluntarily. Thus, compulsory care is practised as a form of Ulysses contract in such situations. In this normative study we scrutinize the arguments commonly used in favour of such Ulysses contracts: (1) the patient lacking free will, (2) Ulysses contracts as self-paternalism, (3) the patient lacking decision competence, (4) Ulysses contracts as a defence of the authentic self, and (5) Ulysses contracts as a practical solution in emergency situations. In our study, we have accepted consequentialist considerations as well as considerations of autonomy. We conclude that compulsory care is not justified when there is a significant uncertainty of beneficial effects or uncertainty regarding the patient's decision-making capacity. We have argued that such uncertainty is present regarding BPD patients. Hence, Ulysses contracts including compulsory care should not be used for this group of patients.

Better in theory than in practise? Challenges when applying the luck egalitarian ethos in health care policy.

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.

Research Integrity Among PhD Students at the Faculty of Medicine: A Comparison of Three Scandinavian Universities.

This study investigates research integrity among PhD students in health sciences at three universities in Scandinavia (Stockholm, Oslo, Odense). A questionnaire with questions on knowledge, attitudes, experiences, and behavior was distributed to PhD students and obtained a response rate of 77.7%. About 10% of the respondents agreed that research misconduct strictly defined (such as fabrication, falsification, and plagiarism, FFP) is common in their area of research, while slightly more agreed that other forms of misconduct is common. A nonnegligible segment of the respondents was willing to fabricate, falsify, or omit contradicting data if they believe that they are right in their overall conclusions. Up to one third reported to have added one or more authors unmerited. Results showed a negative correlation between "good attitudes" and self-reported misconduct and a positive correlation between how frequent respondents thought that misconduct occurs and whether they reported misconduct themselves. This reveals that existing educational and research systems partly fail to foster research integrity.

Are cancer patients better off if they participate in clinical trials? A mixed methods study.

BACKGROUND: Research and cancer care are closely intertwined; however, it is not clear whether physicians and nurses believe that clinical trials offer the best treatment for patients and, if so, whether this belief is justified. The aim of this study was therefore: (i) to explore how physicians and nurses perceive the benefits of clinical trial participation compared with standard care and (ii) whether it is justified to claim that clinical trial participation improves outcomes for cancer patients. METHODS: A mixed methods approach was used employing semi-structured interviews with 57 physicians and nurses in oncology and haematology and a literature review of the evidence for trial superiority, i.e. the idea that receiving treatment in a clinical trial leads to a better outcome compared with standard care. Inductive thematic analysis was used to examine the interview data. A literature review comprising nine articles was conducted according to a conceptual framework developed by Peppercorn et al. and evaluated recent evidence on trial superiority. RESULTS: Our findings show that many physicians and nurses make claims supporting trial superiority, however very little evidence is available in the literature comparing outcomes for trial participants and non-participants that supports their assertions. CONCLUSIONS: Despite the recent rapid development and use of targeted therapy and immunotherapy, we find no support for trial participation to provide better outcomes for cancer patients than standard care. Hence, our present results are in line with previous results from Peppercorn et al. A weaker version of the superiority claim is that even if a trial does not bring about a direct positive effect, it brings about indirect positive effects. However, as the value of such indirect effects is dependent on the individual's specific circumstances and preferences, their existence cannot establish the general claim that treatment in trials is superior. Belief in trial superiority is therefore unfounded. Hence, if such beliefs are communicated to patients in a trial recruitment context, it would provide misleading information. Instead emphasis should be on patients volunteering to give an altruistic contribution to the furthering of knowledge and to the potential benefit of future patients.

Experience-Based Swedish TTO and VAS Value Sets for EQ-5D-5L Health States.

BACKGROUND AND OBJECTIVE: Although value sets for the five-level version of the generic health-related quality-of-life instrument EQ-5D are emerging, there is still no value set available in the literature based on time trade-off valuations made by individuals experiencing the valued health states. The aim of this study was to estimate experience-based value sets for the EQ-5D-5L for Sweden using time trade-off and visual analogue scale valuation methods. METHODS: In a large, cross-sectional, population-based, self-administered postal health survey, the EQ-5D-5L descriptive system, EQ visual analogue scale and a time trade-off question were included. Time trade-off and visual analogue scale valuations of the respondent's current health status were used in statistical modelling to estimate a single-index value of health for each of the 3125 health states. Ordinary least-squares and generalised linear models were estimated with the main effect within each of the five dimensions represented by 20 dummy variables reflecting the additional decrement in value for levels 2-5 when the severity increases by one level sequentially beginning from having no problem. Interaction variables representing the occurrence of severity levels in at least one of the dimensions were tested: severity level 2 or worse (N2); severity level 3 or worse (N3); severity level 4 or worse (N4); severity level 5 (N5). RESULTS: A total of 896 health states (28.7% of the 3125 possible EQ-5D-5L health states) were reported by the 25,867 respondents. Visual analogue scale (n = 23,899) and time trade-off (n = 13,381) responders reported valuations of their currently experienced health state. The preferred regression models used ordinary least-squares estimation for both time trade-off and visual analogue scale values and showed consistency in all coefficients after combining certain levels. Levels 4 and 5 for the dimensions of mobility, self-care and usual activities were combined in the time trade-off model. Including the interaction variable N5, indicating severity level 5 in at least one of the five dimensions, made it possible to distinguish between the two worst severity levels where no other dimension is at level 5 as this coefficient is applied only once. In the visual analogue scale regression model, levels 4 and 5 of the mobility dimension were combined. The interaction variables N2-N4 were included, indicating that each of these terms reflect a statistically significant decrement in visual analogue scale value if any of the dimensions is at severity level 2, 3 or 4, respectively. CONCLUSIONS: Time trade-off and visual analogue scale value sets for the EQ-5D-5L are now available for Sweden. The time trade-off value set is the first such value set based on experience-based time trade-off valuation. For decision makers with a preference for experience-based valuations of health states from a representative population-based sample, the reported value sets may be considered fit for purpose to support resource allocation decision as well as evaluating population health and healthcare performance.

Exploring Community-Dwelling Older Adults' Considerations About Values and Preferences for Future End-of-Life Care: A Study from Sweden.

BACKGROUND AND OBJECTIVES: There is a substantial body of research on advance care planning (ACP), often originating from English-speaking countries and focused on health care settings. However, studies of content of ACP conversations in community settings remain scarce. We therefore explore community-dwelling, older adults' reasoning about end-of-life (EoL) values and preferences in ACP conversations. RESEARCH DESIGN AND METHODS: In this participatory action research project, planned and conducted in collaboration with national community-based organizations, we interviewed 65 older adults without known EoL care needs, about their values and preferences for future EoL care. Conversations were stimulated by sorting and ranking statements in a Swedish version of GoWish cards, called the DöBra cards, and verbatim transcripts were analyzed inductively. RESULTS: While participants shared some common preferences about EoL care, there was great variation among individuals in how they reasoned. Although EoL preferences and prioritizations could be identical, different individuals explained these choices very differently. We exemplify this variation using data from four participants who discussed their respective EoL preferences by focusing on either physical, social, existential, or practical implications. DISCUSSION AND IMPLICATIONS: A previously undocumented benefit of the GoWish/DöBra cards is how the flexibility of the card statements support substantial discussion of an individual's EoL preferences and underlying values. Such in-depth descriptions of participants' reasoning and considerations are important for understanding the very individual nature of prioritizing EoL preferences. We suggest future users of the DöBra/GoWish cards consider the underlying reasoning of individuals' prioritizations to strengthen person-centeredness in EoL conversations and care provision.

Whom should we ask? A systematic literature review of the arguments regarding the most accurate source of information for valuation of health states.

PURPOSE: To determine and critically evaluate the arguments in the published literature regarding the most accurate source of information for valuation of health states: values based on experienced health states (patient values) or values based on described health states (general public values).

Influence of elicitation procedure and phrasing on health state valuations in experience-based time trade-off tasks among diabetes patients in China.

PURPOSE: Open-ended and iteration-based time trade-off (TTO) tasks can both be used for valuation of health states. It has so far not been examined how the elicitation procedure affects the valuation of experience-based health states. The purpose of this study is to investigate the influence of elicitation procedure on experience-based health state values elicited by the TTO method. METHODS: 156 Chinese adults with type 2 diabetes participated in face-to-face interviews with an open-ended or an iteration-based TTO task. The association between the type of TTO task and the valuation of health states was investigated through multiple linear regression analyses. A modified open-ended TTO task was also developed (n = 33) to test whether different phrasings of open-ended TTO tasks influence TTO values. RESULTS: Higher TTO values were observed in the original open-ended TTO task compared to the iteration-based task, which indicates that the elicitation procedure influences the valuation of health states. When the modified open-ended task was introduced, the difference between the two elicitation procedures was no longer statistically significant, suggesting that the phrasing and/or visual presentation of the TTO task may influence the valuation of health states. CONCLUSIONS: The choice of elicitation procedure as well as the description of experience-based TTO tasks may influence the valuation of health states. Further research is warranted, also in other cultural contexts, to further explore these findings.

Challenges to patient centredness - a comparison of patient and doctor experiences from primary care.

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.

Should the deceased be listed as authors?

Sometimes participants in research collaboration die before the paper is accepted for publication. The question we raise in this paper is how authorship should be handled in such situations. First, the outcome of a literature survey is presented. Taking this as our starting point, we then go on to discuss authorship of the dead in relation to the requirements of the Vancouver rules. We argue that in principle the deceased can meet the requirements laid down in these authorship guidelines. However, to include a deceased researcher as author requires a strong justification. The more the person has been involved in the research and writing process before he or she passes away, the stronger the justification for inclusion.