Implementation of advance care planning in the routine care for acutely admitted patients in geriatric units: protocol for a cluster randomized controlled trial.

BACKGROUND: Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. METHODS: This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient's preferences for information and involvement and the clinician's perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis. DISCUSSION: The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23.

Long term outcomes and causal modelling of compulsory inpatient and outpatient mental health care using Norwegian registry data: Protocol for a controversies in psychiatry research project.

OBJECTIVES: Compulsory mental health care includes compulsory hospitalisation and outpatient commitment with medication treatment without consent. Uncertain evidence of the effects of compulsory care contributes to large geographical variations and a controversy on its use. Some argue that compulsion can rarely be justified and should be reduced to an absolute minimum, while others claim compulsion can more frequently be justified. The limited evidence base has contributed to variations in care that raise issues about the quality/appropriateness of care as well as ethical concerns. To address the question whether compulsory mental health care results in superior, worse or equivalent outcomes for patients, this project will utilise registry-based longitudinal data to examine the effect of compulsory inpatient and outpatient care on multiple outcomes, including suicide and overall mortality; emergency care/injuries; crime and victimisation; and participation in the labour force and welfare dependency. METHODS: By using the natural variation in health providers' preference for compulsory care as a source of quasi-randomisation we will estimate causal effects of compulsory care on short- and long-term trajectories. CONCLUSIONS: This project will provide valuable insights for service providers and policy makers in facilitating high quality clinical care pathways for a high risk population group.

Clinicians' perceptions of family involvement in the treatment of persons with psychotic disorders: a nested qualitative study.

Background: Family involvement in mental health care ranges from basic practices to complex interventions such as Family psychoeducation, the latter being a well-documented treatment for psychotic disorders. The aim of this study was to explore clinicians' perceptions of the benefits and disadvantages of family involvement, including possible mediating factors and processes. Methods: Nested in a randomised trial, which purpose was to implement Basic family involvement and support and Family psychoeducation in Norwegian community mental health centres during 2019-2020, this qualitative study is based on eight focus groups with implementation teams and five focus groups with ordinary clinicians. Using a purposive sampling strategy and semi-structured interview guides, focus groups were audio-recorded, transcribed verbatim, and analysed with reflexive thematic analysis. Results: Four main themes were identified as perceived benefits: (1) Family psychoeducation-a concrete framework, (2) Reducing conflict and stress, (3) A triadic understanding, and (4) Being on the same team. Themes 2-4 formed an interconnected triad of mutually reinforcing elements and were further linked to three important clinician-facilitated sub-themes: a space for relatives' experiences, emotions and needs; a space for patients and relatives to discuss sensitive topics and an open line of communication between clinician and relative. Although far less frequent, three main themes were identified as perceived disadvantages or challenges: (1) Family psychoeducation-occasional poor model fit or difficulties following the framework, (2) Getting more involved than usual, and (3) Relatives as a potentially negative influence-important nonetheless. Conclusions: The findings contribute to the understanding of the beneficial processes and outcomes of family involvement, as well as the critical role of the clinician in achieving these and possible challenges. They could also be used to inform future quantitative research on mediating factors and implementation efforts.

Balancing burdens of infection control: Norwegian district medical officers' ethical challenges during the COVID-19 pandemic.

BACKGROUND: In several countries, district medical officers (DMOs) are public health experts with duties including infection control measures. The Norwegian DMOs have been key actors in the local handling of the COVID-19 pandemic. METHODS: The aim of the study was to explore the ethical challenges experienced by Norwegian DMOs during the COVID-19 pandemic, and how the DMOs have handled these challenges. 15 in-depth individual research interviews were performed and analyzed with a manifest approach. RESULTS: Norwegian DMOs have had to handle a large range of significant ethical problems during the COVID-19 pandemic. Often, a common denominator has been the need to balance burdens of the contagion control measures for different individuals and groups. In another large set of issues, the challenge was to achieve a balance between safety understood as effective contagion prevention on the one hand, and freedom, autonomy and quality of life for the same individuals on the other. CONCLUSIONS: The DMOs have a central role in the municipality's handling of the pandemic, and they wield significant influence. Thus, there is a need for support in decision-making, both from national authorities and regulations, and from discussions with colleagues.

Barriers and facilitators to implementing advance care planning in naïve contexts - where to look when plowing new terrain?

BACKGROUND: Advance care planning (ACP) is a way of applying modern medicine to the principle of patient autonomy and ensuring that patients receive medical care that is consistent with their values, goals and preferences. Robust evidence supports the benefits of ACP, but it remains an underutilized resource in most countries. This paper goes from the naïve point of view, and seeks to identify the barriers and facilitators to implementation in unfamiliarized contexts and in a whole system approach involving the clinical, institutional and policy level to improve the implementation of ACP. METHODS: Qualitative interviews were chosen to enable an explorative, flexible design. Qualitative interviews were conducted with 40 health care professionals and chief physicians in hospitals and in municipalities. The thematic analysis was done following Braun and Clarke's strategy for thematic analysis. RESULTS: The main reported barriers were the lack of time and space, a lack of culture and leadership legitimizing ACP, lack of common communication systems, and unclear responsibility about who should initiate, resulting in missed opportunities and overtreatment. Policy development, public and professional education, and standardization of documentation were reported as key to facilitate ACP and build trust across the health care system. CONCLUSIONS: Progressively changing the education of health professionals and the clinical culture are major efforts that need to be tackled to implement ACP in unfamiliarized contexts, particularly in contexts where patient's wishes are not legally binding. This will need to be tackled through rectifying the misconception that ACP is only about death, and providing practical training for health professionals, as well as developing policies and legislation on how to include patients and caregivers in the planning of care.

Two years of ethics reflection groups about coercion in psychiatry. Measuring variation within employees' normative attitudes, user involvement and the handling of disagreement.

BACKGROUND: Research on the impact of ethics reflection groups (ERG) (also called moral case deliberations (MCD)) is complex and scarce. Within a larger study, two years of ERG sessions have been used as an intervention to stimulate ethical reflection about the use of coercive measures. We studied changes in: employees' attitudes regarding the use of coercion, team competence, user involvement, team cooperation and the handling of disagreement in teams. METHODS: We used panel data in a longitudinal design study to measure variation in survey scores from multidisciplinary employees from seven departments within three Norwegian mental health care institutions at three time points (T0-T1-T2). Mixed models were used to account for dependence of data in persons who participated more than once. RESULTS: In total, 1068 surveys (from 817 employees who did and did not participate in ERG) were included in the analyses. Of these, 7.6% (N = 62) responded at three points in time, 15.5% (N = 127) at two points, and 76.8% (N = 628) once. On average, over time, respondents who participated in ERG viewed coercion more strongly as offending (p < 0.05). Those who presented a case in the ERG sessions showed lower scores on User Involvement (p < 0.001), Team Cooperation (p < 0.01) and Constructive Disagreement (p < 0.01). We observed significant differences in outcomes between individuals from different departments, as well as between different professions. Initial significant changes due to frequency of participation in ERG and case presentation in ERG did not remain statistically significant after adjustment for Departments and Professions. Differences were generally small in absolute terms, possibly due to the low amount of longitudinal data. CONCLUSIONS: This study measured specific intervention-related outcome parameters for describing the impact of clinical ethics support (CES). Structural implementation of ERGs or MCDs seems to contribute to employees reporting a more critical attitude towards coercion. Ethics support is a complex intervention and studying changes over time is complex in itself. Several recommendations for strengthening the outcomes of future CES evaluation studies are discussed. CES evaluation studies are important, since-despite the intrinsic value of participating in ERG or MCD-CES inherently aims, and should aim, at improving clinical practices.

"The most important thing is that those closest to you, understand you": a nested qualitative study of persons with psychotic disorders' experiences with family involvement.

Introduction: Family interventions constitute effective treatment for persons with psychotic disorders. However, the active ingredients and beneficial processes of these interventions are insufficiently examined, and qualitative explorations of patients` experiences are lacking. This study was nested in a cluster randomised trial that implemented national guidelines on family involvement in Norwegian community mental health centres, including family psychoeducation and basic family involvement and support. The aim of this sub-study was to explore how patients with psychotic disorders experience systematic family involvement, and its significance. Methods: We conducted semi-structured, individual interviews with 13 persons with a psychotic disorder after systematic family involvement. The participants were recruited through purposive sampling. Qualitative content analysis guided the analysis. Results: Participants reported overall positive experiences with systematic family involvement. It was significant that the relatives increasingly understood more about psychosis and their situation, while they themselves also gained more insight into the relatives` situation. The participants emphasised the need to enable both patients and relatives to safely share experiences in a containing space, led by professionals. Shared understanding and awareness of each other's situation further improved communication, coping with the illness, reduced stress, and stimulated a more caring family environment. The therapist seemed crucial to facilitate these beneficial communication processes, and also to provide continuous support to the relatives. Reported challenges included that the participants felt vulnerable in the initial phase, a need for tailored approaches, and too late start-up. Conclusion: Findings from this study suggest that persons with psychotic disorders may benefit greatly from participating in systematic family involvement. This study also gives new insight into possible mediators of positive outcomes both for the patients and the relatives. Systematic family involvement should be implemented a standard approach in the early phase of the disease, using a step-wise and tailored process.

Citizen attitudes to non-treatment decision making: a Norwegian survey.

BACKGROUND: Decisions about appropriate treatment at the end of life are common in modern healthcare. Non-treatment decisions (NTDs), comprising both withdrawal and withholding of (potentially) life-prolonging treatment are in principle accepted in Norway. However, in practice they may give rise to significant moral problems for health professionals, patients and next of kin. Here, patient values must be considered. It is relevant to study the moral views and intuitions of the general population on NTDs and special areas of contention such as the role of next of kin in decision-making. METHODS: Electronic survey to members of a nationally representative panel of Norwegian adults. Respondents were presented with vignettes describing patients with disorders of consciousness, dementia, and cancer where patient preferences varied. Respondents answered ten questions about the acceptability of non-treatment decision making and the role of next of kin. RESULTS: We received 1035 complete responses (response rate 40.7%). A large majority, 88%, supported the right of competent patients to refuse treatment in general. When an NTD was in line with the patient's previously expressed preferences, more respondents tended to find NTDs acceptable. More respondents would accept NTDs for themselves than for the vignette patients. In a scenario with an incompetent patient, clear majorities wanted the views of next of kin to be given some but not decisive weight, and more weight if concordant with the patient's wishes. There were, however, large variations in the respondents' views. CONCLUSION: This survey of a representative sample of the Norwegian adult population indicates that attitudes to NTDs are often in line with national laws and guidelines. However, the high variance among the respondents and relatively large weight given to next of kin's views, indicate a need for appropriate dialogue among all stakeholders to prevent conflicts and extra burdens. Furthermore, the emphasis given to previously expressed opinions indicates that advance care planning may increase the legitimacy of NTDs and prevent challenging decision-making processes.

Implementation of Guidelines on Family Involvement for Persons with Psychotic Disorders (IFIP): A Cluster Randomised Controlled Trial.

Family involvement is part of the evidence-based treatment for persons with psychotic disorders, yet is under-implemented despite guideline recommendations. This study assessed whether an implementation support programme increased the adherence to guidelines on family involvement, compared to guideline/manual only. In a cluster randomised design, community mental health centre units in South-East Norway went through stratified allocation to the experimental (n = 7) or control (n = 7) arm. Experimental clusters received an implementation support programme including clinical training and supervision, appointing a family coordinator and an implementation team, a toolkit, and fidelity measurements at baseline, 12, 18, and 24 months with on-site feedback and supervision. Control clusters received no such support and had fidelity measurements at baseline and 24 months without feedback. During fidelity measurements, adherence to the guidelines was measured with the basic family involvement and support scale, the general organizational index, and the family psychoeducation fidelity scale, the latter being the primary outcome. The scales consist of 12-14 items rated from 1 to 5. Data was analysed with an independent samples t-test, linear mixed models, and a tobit regression model. At 24 months, the mean scores were 4.00 or higher on all scales in the experimental arm, and the increase in adherence to the guidelines was significantly greater than in the control arm with p-values < 0.001. Large-scale implementation of guidelines on family involvement for persons with psychotic disorders in community mental health centres may be accomplished, with substantial implementation support.Trial Registration: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19.

The duty of confidentiality during family involvement: ethical challenges and possible solutions in the treatment of persons with psychotic disorders.

BACKGROUND: Family involvement during severe mental illness is still poorly implemented, contrary to evidence-based recommendations. Confidentiality issues are among the most prominent barriers, with mental health professionals facing complex ethical, legal, and practical challenges. However, research focusing on this barrier is very sparse. Nested within a cluster-randomised trial to implement guidelines on family involvement for persons with psychotic disorders in community mental health centres, the aim of this sub-study was to explore ethical challenges related to the duty of confidentiality as experienced by mental health professionals, and to explore key measures that might contribute to improving the handling of such challenges. METHODS: In total 75 participants participated in 21 semi-structured focus groups, including implementation team members at the initial and late phase of the intervention period and clinicians who were not on the implementation teams, at late phase of implementation. We used purposive sampling and manifest content analysis to explore participants' experiences and change processes. RESULTS: Ethical challenges related to the duty of confidentiality included 1) Uncertainty in how to apply the legislation, 2) Patient autonomy versus a less strict interpretation of the duty of confidentiality, 3) Patient alliance and beneficence versus a less strict interpretation of the duty of confidentiality, 4) How to deal with uncertainty regarding what relatives know about the patients' illness, and 5) Relatives' interests versus the duty of confidentiality. Measures to facilitate better handling of the duty of confidentiality included 1) Training and practice in family involvement, and 2) Standardisation of family involvement practices. CONCLUSION: When health professionals gained competence in and positive experiences with family involvement, this led to vital changes in how they interpreted and practiced the duty of confidentiality in their ethical reasoning and in clinical practice. Especially, the need to provide sufficient information to the patients about family involvement became evident during the study. To improve the handling of confidentiality issues, professionals should receive training in family involvement and confidentiality statutes followed by practice. Furthermore, family involvement should be standardised, and confidentiality guidelines should be implemented in the mental health services. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19.

Barriers and facilitators when implementing family involvement for persons with psychotic disorders in community mental health centres - a nested qualitative study.

BACKGROUND: The uptake of family involvement in health care services for patients with psychotic disorders is poor, despite a clear evidence base, socio-economic and moral justifications, policy, and guideline recommendations. To respond to this knowledge-practice gap, we established the cluster randomised controlled trial: Implementation of guidelines on Family Involvement for persons with Psychotic disorders in community mental health centres (IFIP). Nested in the IFIP trial, this sub-study aims to explore what organisational and clinical barriers and facilitators local implementation teams and clinicians experience when implementing family involvement in mental health care for persons with psychotic disorders. METHODS: We performed 21 semi-structured focus groups, including 75 participants in total. Implementation team members were interviewed at the initial and middle phases of the intervention period, while clinicians who were not in the implementation team were interviewed in the late phase. A purposive sampling approach was used to recruit participants with various engagement in the implementation process. Data were analysed using manifest content analysis. RESULTS: Organisational barriers to involvement included: 1) Lack of shared knowledge, perceptions, and practice 2) Lack of routines 3) Lack of resources and logistics. Clinical barriers included: 4) Patient-related factors 5) Relative-related factors 6) Provider-related factors. Organisational facilitators for involvement included: 1) Whole-ward approach 2) Appointed and dedicated roles 3) Standardisation and routines. Clinical facilitators included: 4) External implementation support 5) Understanding, skills, and self-efficacy among mental health professionals 6) Awareness and attitudes among mental health professionals. CONCLUSIONS: Implementing family involvement in health care services for persons with psychotic disorders is possible through a whole-ward and multi-level approach, ensured by organisational- and leadership commitment. Providing training in family psychoeducation to all staff, establishing routines to offer a basic level of family involvement to all patients, and ensuring that clinicians get experience with family involvement, reduce or dissolve core barriers. Having access to external implementation support appears decisive to initiate, promote and evaluate implementation. Our findings also point to future policy, practice and implementation developments to offer adequate treatment and support to all patients with severe mental illness and their families. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19.

Frequent Violations and Infringements against Users in Mental Health Care Confirmed by Both Users and Professionals - A Quantitative Study.

The main task of mental health care services is to provide good quality of care. Despite this, users are sometimes treated badly by staff. The purpose of this study was to investigate violations and infringements towards users in mental health care services, from the perspectives of both staff and users. Data were gathered through an anonymous online questionnaire sent to staff and users in Norway. Staff were recruited in collaboration with professional organisations and users in collaboration with user-organisations.

Medical students' experiences when empathizing with patients' emotional issues during a medical interview - a qualitative study.

BACKGROUND: There is evidence that empathy decreases as medical students go through clinical training. However, there are few in-depth studies investigating the students' own experiences when trying to empathize in concrete clinical encounters. We therefore wanted to explore medical students' perceptions, experiences, and reflections when empathizing with patients expressing emotional issues. METHODS: A qualitative content analysis of semi-structured interviews with third year medical students (N = 11) was conducted using video-stimulated recall from their own medical interview with a simulated chronically ill patient. Students were led to believe that the patient was real. RESULTS: Five themes which may influence student empathy during history-taking were identified through analysis of interview data: (1) Giving priority to medical history taking, (2) Interpreting the patient's worry as lack of medical information, (3) Conflict between perspectives, (4) Technical communication skill rather than authentic and heart-felt and (5) The distant professional role. CONCLUSIONS: The participating students described conflicts between a medical agenda, rules and norms for professional conduct and the students' own judgments when trying to empathize with the patient. To our knowledge, this is the first study ever to document the students' own perspective in concrete situations as well as how these reported experiences and reflections affect their empathy towards patients. Since we now know more about what is likely to hinder medical students' empathy, educators should actively encourage group reflection and discussion in order to avoid these negative effects of history taking both inside and outside of the clinical setting.

The first steps towards professional distance: A sequential analysis of students' interactions with patients expressing emotional issues in medical interviews.

OBJECTIVE: Explore sequential patterns in students' interactions with patients expressing emotional concerns in a medical interview. METHODS: Concepts and principles from conversation analysis (CA) were used to examine the turn-by-turn sequential organization of student actions in eleven video-taped medical interviews. We used results from an earlier coding with an interaction analysis system (VR-CoDES) in a previously published paper as a point of reference. RESULTS: By using CA instead of VR-CoDES as our primary investigative method we observed that student turns previously coded as elicitations to simulated patients' expressions of emotion were often preceded by subtle patient initiatives. Students encouraged further elaboration by displaying their understanding of the emotional issue as a story telling still in progress. Students' expressions of understanding however, gave little room for further elaboration. Finally, students often addressed emotional issues as a medical issue and offered professional advice. CONCLUSIONS: Students' actions seemed specifically designed to display interest in the patients' initiatives to talk about emotional experiences without departing from their initial interview task or violating norms for professional conduct. PRACTICE IMPLICATIONS: Educators and practitioners should reconsider how the medical interview may shape expectations for professional conduct and can thereby unintentionally restrict students' empathy development.

Patients with severe mental illness and the ethical challenges related to confidentiality during family involvement: A scoping review.

Background: Despite evidence on the significant potential value of family involvement during the treatment of patients with severe mental illness, research has shown that family involvement is largely underused. The duty of confidentiality is reported to be a key barrier to family involvement. To develop more insight into this barrier, this scoping review focuses on the following question: What are the reported ethical challenges related to confidentiality when involving family in the treatment of patients with severe mental illness? Methods: A systematic search into primary studies was conducted using the following databases: Medline (Ovid), PsycINFO (Ovid), CINAHL (EBSCO), and Web of Science core collection (Clarivate). The PICO (Population, Intervention, Comparison, Outcome) scheme and qualitative content analysis were used to make the ethical challenges more explicit. Results: Twelve studies-both qualitative and quantitative-were included. We identified the following main categories of ethical challenges: (1) the best interest of family members vs. confidentiality, (2) the patient's best interest vs. the right to confidentiality, (3) patient trust and alliance as a reason not to involve the relatives or not to share information, and (4) using confidentiality as a smokescreen. We also identified several subcategories and illustrative and concrete examples of ethical challenges. Conclusions: Through a systematic examination, we discovered various types of ethical challenges related to confidentiality when involving the family in the treatment of patients with severe mental illness. However, research on these ethical challenges and the constituents of these challenges remains limited and often implicit. An ethical analysis will create knowledge which may facilitate a more balanced and nuanced approach to respecting the principle of confidentiality while also considering other moral principles. The duty of confidentiality does not always have to be a major barrier to family involvement; this insight and using this ethical analysis in the training of healthcare professionals may benefit the patient, the family, and the services.

Positive attitudes to advance care planning - a Norwegian general population survey.

BACKGROUND: Authorities recommend advance care planning and public acceptance of it is a prerequisite for widespread implementation. Therefore, we did the first study of the Norwegian public with an aim of getting knowledge on their attitudes to issues related to advance care planning. METHODS: An electronic survey to a nationally representative web panel of Norwegian adults. RESULTS: From 1035 complete responses (response rate 40.7%), we found that more than nine out of ten of the general public wanted to participate in advance care planning, believed it to be useful for many, and wanted to make important healthcare decisions themselves. Almost nine out of ten wanted to be accompanied by next of kin during advance care planning. Most (69%) wanted health care personnel to initiate advance care planning and preferred it to be timed to serious illness with limited lifetime (68%). Only about 9% stated that health care personnel should have the final say in healthcare decisions in serious illness. CONCLUSIONS: Developing and implementing advance care planning as a public health initiative seems warranted based on the results of this study. Patient perspectives should be promoted in decision-making processes. Nevertheless, training of health care personnel should emphasise voluntariness and an individual approach to initiating, timing and conducting advance care planning because of individual variations.

Medical students' expressions of empathy: A qualitative study of verbal interactions with patients expressing emotional issues in a medical interview.

OBJECTIVE: Explore medical students' verbal responses to patients expressing emotional issues in a medical interview. METHODS: Eleven third-year students were instructed to conduct a medical interview with a simulated chronically ill patient while being videotaped (but were led to believe that the patient was real). An interaction analysis system (VR-CoDES) was used to identify patient utterances containing emotional expressions as well as student utterances responding to these emotional expressions. A qualitative content analysis of student utterances was then conducted. RESULTS: Four categories that depicted student responses were identified: (1) questions focusing on a medico-professional agenda, (2) allowing disclosure of emotions without explicit acknowledgment of emotions, (3) attempts at reassurance, and (4) explicit recognition of emotions, but most often on a factual and descriptive level. CONCLUSIONS: Our analysis indicate that these students gave priority to medico-professional tasks and responsibilities in their responses. They demonstrated some interest in the patient's emotional experiences whilst most often leaving out their own personal perspectives. PRACTICE IMPLICATIONS: Communication skills curricula should address how the medical interview affects empathy and interaction with patients and encourage discussion and reflection on how to retrieve medical information while paying adequate attention to the patient's and own emotions, experiences, and perspectives.