Communication about euthanasia in Dutch nursing homes.

In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future. Whether or not euthanasia was discussed was influenced by the openness of the resident and the accessibility and openness of their medical practitioner. Important factors mentioned by respondents regarding interaction were the level of connectedness with others, the feeling of being understood and one's own firmness in holding on to the option of euthanasia in the future. Regarding anticipating the future, respondents felt reassured in having an advance directive. They expressed a lack of certainty whether the medical practitioner would be willing to eventually perform euthanasia. As a practical implication, ACP may provide a pathway for improvement of communication about euthanasia with competent residents.

Don't be late! Postponing cognitive decline and preventing early unemployment in people with multiple sclerosis: a study protocol.

BACKGROUND: Up to 65% of people with multiple sclerosis (PwMS) develop cognitive deficits, which hampers their ability to work, participating in day-to-day life and ultimately reducing quality of life (QoL). Early cognitive symptoms are often less tangible to PwMS and their direct environment and are noticed only when symptoms and work functioning problems become more advanced, i.e., when (brain) damage is already advanced. Treatment of symptoms at a late stage can lead to cognitive impairment and unemployment, highlighting the need for preventative interventions in PwMS. AIMS: This study aims to evaluate the (cost-) effectiveness of two innovative preventative interventions, aimed at postponing cognitive decline and work functioning problems, compared to enhanced usual care in improving health-related QoL (HRQoL). METHODS: Randomised controlled trial including 270 PwMS with mild cognitive impairment, who have paid employment ≥ 12 h per week and are able to participate in physical exercise (Expanded Disability Status Scale < 6.0). Participants are randomised across three study arms: 1) 'strengthening the brain' - a lifestyle intervention combining personal fitness, mental coaching, dietary advice, and cognitive training; 2) 'strengthening the mind' - a work-focused intervention combining the capability approach and the participatory approach in one-on-one coaching by trained work coaches who have MS themselves; 3) Control group-receiving general information about cognitive impairment in MS and receiving care as usual. Intervention duration is four months, with short-term and long-term follow-up measurements at 10 and 16 months, respectively. The primary outcome measure of the Don't be late! intervention study will be HRQoL as measured with the 36-item Short Form. Secondary outcomes include cognition, work related outcomes, physical functioning, structural and functional brain changes, psychological functioning, and societal costs. Semi-structured interviews and focus groups with stakeholders will be organised to qualitatively reflect on the process and outcome of the interventions. DISCUSSION: This study seeks to prevent (further) cognitive decline and job loss due to MS by introducing tailor-made interventions at an early stage of cognitive symptoms, thereby maintaining or improving HRQoL. Qualitative analyses will be performed to allow successful implementation into clinical practice. TRIAL REGISTRATION: Retrospectively registered at ClinicalTrials.gov with reference number NCT06068582 on 10 October 2023.

Don't be late! Timely identification of cognitive impairment in people with multiple sclerosis: a study protocol.

BACKGROUND: Cognitive impairment occurs in up to 65% of people with multiple sclerosis (PwMS), negatively affecting daily functioning and health-related quality of life. In general, neuropsychological testing is not part of standard MS-care due to insufficient time and trained personnel. Consequently, a baseline assessment of cognitive functioning is often lacking, hampering early identification of cognitive decline and change within a person over time. To assess cognitive functioning in PwMS in a time-efficient manner, a BICAMS-based self-explanatory digital screening tool called the Multiple Screener©, has recently been developed. The aim of the current study is to validate the Multiple Screener© in a representative sample of PwMS in the Netherlands. Additionally, we aim to investigate how cognitive functioning is related to psychological factors, and both work and societal participation. METHODS: In this cross-sectional multicentre study, 750 PwMS (aged 18-67 years) are included. To obtain a representative sample, PwMS are recruited via 12 hospitals across the Netherlands. They undergo assessment with the Minimal Assessment of Cognitive Functioning in MS (MACFIMS; reference-standard) and the Multiple Screener©. Sensitivity, specificity, and predictive values for identifying (mild) cognitive impairment are determined in a subset of 300 participants. In a second step, the identified cut-off values are tested in an independent subset of at least 150 PwMS. Moreover, test-retest reliability for the Multiple Screener© is determined in 30 PwMS. Information on psychological and work-related factors is assessed with questionnaires. DISCUSSION: Validating the Multiple Screener© in PwMS and investigating cognition and its determinants will further facilitate early identification and adequate monitoring of cognitive decline in PwMS.

BigMove: A Group Intervention for People with Physical and Mental Health Conditions: Development, Theoretical Frameworks, Essential Elements and Design.

Introduction: This article describes an innovative, integrated care intervention, called BigMove, which aims to improve the functioning, capabilities and quality of life of people with a combination of physical and mental health conditions. Description: Theoretical frameworks reflected in the intervention are the Capability Approach (CA) and Self-Determination Theory (SDT). Essential elements of the intervention included to expand participants' behavioural repertoire are motivational interviewing; functional goal setting (using the International Classification of Functioning, Disability and Health (ICF); cognitive behavioural therapy; enjoyment; support of the group; and physical activity. The design combines individual sessions and group sessions. Discussion: By integrating the CA and the SDT, the intervention enables participants to make self-directed and value-driven choices in life and change their behaviour accordingly to strengthen their functioning and capabilities. To foster person-centred, integrated care, it is crucial to reform the interaction between professionals and patients and to re-structure the organisation and financing of care to enable the provision of complex integrated care interventions. Conclusion: For people with physical and mental health conditions, the intervention BigMove provides an innovative integrated care approach that addresses aspirations people have regarding their functioning and focuses on individual goal setting and behaviour change.

Establishing irremediable psychiatric suffering in the context of medical assistance in dying in the Netherlands: a qualitative study.

BACKGROUND: Establishing irremediability of suffering is a central challenge in determining the appropriateness of medical assistance in dying (MAiD) for patients with a psychiatric disorder. We sought to evaluate how experienced psychiatrists define irremediable psychiatric suffering in the context of MAiD and what challenges they face while establishing irremediable psychiatric suffering. METHODS: We conducted a qualitative study of psychiatrists in the Netherlands with experience assessing irremediable psychiatric suffering in the context of MAiD. We collected data from in-depth, semistructured interviews focused on the definition of irremediable psychiatric suffering and on the challenges in establishing irremediability. We analyzed themes using a modified grounded theory approach. RESULTS: The study included 11 psychiatrists. Although irremediable psychiatric suffering is a prospective concept, most participants relied on retrospective dimensions to define it, such as a history of failed treatments, and expressed that uncertainty was inevitable in this process. When establishing irremediable psychiatric suffering, participants identified challenges related to diagnosis and treatment. The main diagnostic challenge identified was the frequent co-occurrence of more than 1 psychiatric diagnosis. Important challenges related to treatment included assessing the quality of past treatments, establishing when limits of treatment had been reached and managing "treatment fatigue." INTERPRETATION: Challenges regarding the definition, diagnosis and treatment of irremediable psychiatric suffering complicate the process of establishing it in the context of MAiD. Development of consensus clinical criteria for irremediable psychiatric suffering in this context and further research to understand "treatment fatigue" among patients with psychiatric disorders may help address these challenges. Registration: This study was preregistered under osf.io/2jrnd.

Irremediable Psychiatric Suffering in The Context of Medical Assistance in Dying: A Delphi-Study.

OBJECTIVE: Patients with a psychiatric disorder are eligible to request medical assistance in dying (MAID) in a small but growing number of jurisdictions, including the Netherlands and Belgium. In Canada, MAID for mental illness will become possible in 2023. For this request to be granted, most of these jurisdictions demand that the patient is competent in her request, and that the suffering experienced is unbearable and irremediable. Especially the criterion of irremediability is challenging to establish in patients with psychiatric disorders. The aim of this research is to establish what criteria Dutch and Belgian experts agree to be necessary in characterising irremediable psychiatric suffering (IPS) in the context of MAID. METHODS: A two-round Delphi procedure among psychiatrists with relevant experience. RESULTS: Thirteen consensus criteria were established: five diagnostic and eight treatment-related criteria. Diagnostically, the participants deem a narrative description and attention to contextual and systemic factors necessary. Also, a mandatory second opinion is required. The criteria concerning treatment show that extensive biopsychosocial treatment is needed, and the suffering must be present for several years. Finally, in the case of refusal, the participants agree that there are limits to the number of diagnostic procedures or treatments a patient must undergo. CONCLUSIONS: Consensus was found among a Dutch and Belgian expert group on potential criteria for establishing IPS in the context of MAID. These criteria can be used in clinical decision-making and can inform future procedural demands and research.

The Forensic High and Intensive Care Monitor: Measurement Properties of a Model Fidelity Scale for Contact-Based Care in Forensic Psychiatry.

Forensic High and Intensive Care (FHIC) has recently been developed as a new care model in Dutch forensic psychiatry. FHIC aims to provide contact-based care. To support Dutch forensic care institutions in the implementation of the model, a model fidelity scale was developed called the FHIC monitor. The aim of this study was to assess the inter-rater reliability, content validity, and construct validity of the FHIC monitor. A multi-methods design was used, combining qualitative and quantitative research. To collect data, audits and focus group meetings were organized to score care at individual wards with the monitor and get feedback from auditors and audit receiving teams about the quality of the monitor. In total, fifteen forensic mental healthcare institutions participated. The instrument showed acceptable inter-rater reliability and content validity, and a significant difference between expected high and low scoring institutions, supporting construct validity. The instrument can be used as a valid instrument to measure the level of implementation of the FHIC model on forensic psychiatric wards in the Netherlands.

A sexual abuse case series of infants and toddlers by a professional caregiver: A qualitative analysis of parents' experiences during the initial crisis period post-discovery.

BACKGROUND: The discovery that one's child has been sexually abused may be one of the worst events a parent can experience. The importance of parental support for the recovery of child sexual abuse (CSA) victims emphasizes the need to gain insight in difficulties parents face after disclosure. OBJECTIVE: To improve crisis intervention by exploring how parents of very young, mostly male CSA victims involved in a large unique CSA case, look back on their initial reactions after disclosure, the impact of media coverage, and their experiences with service responses during the immediate aftermath of CSA discovery. PARTICIPANTS AND SETTING: We conducted 18 qualitative interviews with 21 parents enrolled in the longitudinal Amsterdam Sexual Abuse Case (ASAC) study. METHODS: We used thematic analysis, combining a deductive and inductive approach. RESULTS: We identified four themes regarding parents' initial experiences after disclosure: shock, uncertainty, roller coaster and survival mode. Four themes emerged regarding the impact of media coverage: vulnerable to exposure, fear that the child would recognize the suspect, no escape possible, and burden versus acknowledgement. Parents' experiences regarding the actions of professionals also generated four themes: stressful and confronting, need for support, need for information, and need for professional competence. CONCLUSIONS: Disclosure of extrafamilial CSA left parents in shock, affecting their sense of control. Media coverage exacerbated stress for many parents, although some also drew support from it. Actions of professionals defined by parents as helpful included: being supportive, compassionate, accessible, and competent, providing information, and promoting autonomy. Implications for professionals are discussed.

Automated recognition of functioning, activity and participation in COVID-19 from electronic patient records by natural language processing: a proof- of- concept.

PURPOSE: To address the feasibility, reliability and internal validity of natural language processing (NLP) for automated functional assessment of hospitalised COVID-19 patients in key International Classification of Functioning, Disability and Health (ICF) categories and levels from unstructured text in electronic health records (EHR) from a large teaching hospital. MATERIALS AND METHODS: Eight human annotators assigned four ICF categories to relevant sentences: Emotional functions, Exercise tolerance, Walking and Moving, Work and Employment and their ICF levels (Functional Ambulation Categories for Walking and Moving, metabolic equivalents for Exercise tolerance). A linguistic neural network-based model was trained on 80% of the annotated sentences; inter-annotator agreement (IAA, Cohen's kappa), a weighted score of precision and recall (F1) and RMSE for level detection were assessed for the remaining 20%. RESULTS: In total 4112 sentences of non-COVID-19 and 1061 of COVID-19 patients were annotated. Average IAA was 0.81; F1 scores were 0.7 for Walking and Moving and Emotional functions; RMSE for Walking and Moving (5- level scale) was 1.17 for COVID-19 patients. CONCLUSION: Using a limited amount of annotated EHR sentences, a proof-of-concept was obtained for automated functional assessment of COVID-19 patients in ICF categories and levels. This allows for instantaneous assessment of the functional consequences of new diseases like COVID-19 for large numbers of patients.Key messagesHospitalised Covid-19 survivors may persistently suffer from low physical and mental functioning and a reduction in overall quality of life requiring appropriate and personalised rehabilitation strategies.For this, assessment of functioning within multiple domains and categories of the International Classification of Function is required, which is cumbersome using structured data.We show a proof-of-concept using Natural Language Processing techniques to automatically derive the aforementioned information from free-text notes within the Electronic Health Record of a large academic teaching hospital.

Diversity in Advance Care Planning and End-Of-Life Conversations: Discourses of Healthcare Professionals and Researchers.

To meet the end-of-life needs of all patients, ongoing conversations about values and preferences regarding end-of-life care are essential. Aspects of social identity are associated with disparities in end-of-life care outcomes. Therefore, accounting for patient diversity in advance care planning and end-of-life conversations is important for equitable end-of-life practices. We conducted 16 semi-structured interviews to explore how Dutch healthcare professionals and researchers conceptualized diversity in advance care planning and end-of-life conversations and how they envision diversity-responsive end-of-life care and research. Using thematic discourse analysis, we identified five 'diversity discourses': the categorical discourse; the diversity as a determinant discourse; the diversity in norms and values discourse; the everyone is unique discourse, and the anti-essentialist discourse. These discourses may have distinct implications for diversity-responsive end-of-life conversations, care and research. Awareness and reflection on these discourses may contribute to more inclusive end-of-life practices.

Implementation of High and Intensive Care (HIC) in the Netherlands: a Process Evaluation.

The High and Intensive Care model (HIC) was developed to reduce coercion and improve the quality of acute mental health care in the Netherlands. This study aimed to identify drivers of change which motivate professionals and management to implement HIC, and to identify facilitators and barriers to the implementation process. 41 interviews were conducted with multiple disciplines on 29 closed acute admission wards for adult psychiatric patients of 21 mental healthcare institutions in the Netherlands. The interviews were analysed by means of thematic analysis, consisting of the steps of open coding, axial coding and selective coding. Findings reveal three major drivers of change: the combination of existing interventions in one overall approach to reduce coercion, the focus on contact and cooperation and the alignment with recovery oriented care. Facilitators to implementation of HIC were leadership, involving staff, making choices about what to implement first, using positive feedback and celebrating successes, training and reflection, and providing operationalizable goals. Barriers included the lack of formal organizational support, resistance to change, shortage of staff and use of flex workers, time restraints and costs, lack of knowledge, lack of facilities, and envisaged shortcomings of the HIC standards. Drivers of change motivate staff to implement HIC. In the process of implementation, attention to facilitators and barriers on the level of culture, structure and practice is needed.

High and Intensive Care in Psychiatry: A New Model for Acute Inpatient Care.

In response to three reforms in Dutch mental health care, an organizational framework, including methods and interventions, was developed as part of a new model for acute inpatient care. Core elements of high and intensive care (HIC) include preventing seclusion by means of a stepped-care principle; a six-step process of admission, treatment, and care; combining medical and recovery approaches; combining professional and experiential knowledge; and providing a healing environment. The HIC model differs from the utilization of psychiatric intensive care units in that it focuses on collaboration with outpatient care; establishing contact between staff, patients, and relatives; and minimizing coercion.

Moral Dilemmas in Contact-Based Care: The Relevance of Moral Case Deliberation for Forensic Psychiatry.

Currently, forensic psychiatry shows a shift from a control-based to a contact-based approach. Working from contact may, however, entail new moral questions and dilemmas. How to secure safety when focusing on contact? Does contact imply being physically close to the patient, or should one refrain from intimate relations? In order to help care professionals to deal with these moral issues, clinical ethics support can be useful. A specific approach in clinical ethics support is moral case deliberation (MCD). An MCD is a structured dialogue between professionals on a moral issue they experience in practice, structured by a conversation method and guided by a facilitator. In this article, we describe the background and procedures of MCD. Furthermore, we present a case example in which care professionals reflect on the moral question of whether provision of care in forensic psychiatry may entail physical closeness. The MCD shows that an open conversation results in a better understanding of different perspectives and creates the basis for finding a joint way to proceed in the case. We conclude that MCD can enable professionals to reflect on moral issues and develop shared values in forensic psychiatry.

The Active Recovery Triad Model: A New Approach in Dutch Long-Term Mental Health Care.

Unlike developments in short-term clinical and community care, the recovery movement has not yet gained foothold in long-term mental health services. In the Netherlands, approximately 21,000 people are dependent on long-term mental health care and support. To date, these people have benefited little from recovery-oriented care, rather traditional problem-oriented care has remained the dominant approach. Based on the view that recovery is within reach, also for people with complex needs, a new care model for long-term mental health care was developed, the active recovery triad (ART) model. In a period of 2.5 years, several meetings with a large group of stakeholders in the field of Dutch long-term mental health care took place in order to develop the ART model. Stakeholders involved in the development process were mental health workers, policy advisors, managers, directors, researchers, peer workers, and family representatives. The ART model combines an active role for professionals, service users, and significant others, with focus on recovery and cooperation between service users, family, and professionals in the triad. The principles of ART are translated into seven crucial steps in care and a model fidelity scale in order to provide practical guidelines for teams implementing the ART model in practice. The ART model provides guidance for tailored recovery-oriented care and support to this "low-volume high-need" group of service users in long-term mental health care, aiming to alter their perspective and take steps in the recovery process. Further research should investigate the effects of the ART model on quality of care, recovery, and autonomy of service users and cooperation in the triad.

Preferences on forgoing end-of-life treatment are stable over time with people owning an advance directive; A cohort study.

OBJECTIVE: We studied if preferences about end-of-life care of people having an advance directive (AD) stay stable over time and if (in) stability is associated with health status. METHODS: A longitudinal cohort study with a population owning different types of ADs (n = 4638). Respondents repeatedly answered questionnaires between 2005-2010. Using hypothetical scenarios about advanced cancer and dementia we assessed preferences for continuing or forgoing resuscitation, mechanical ventilation, artificial nutrition and antibiotics. Using generalized estimated equations we analysed whether life-events and quality of life influenced changes in preferences. RESULTS: The proportion of respondents with stable preferences ranged from 67 to 98 %. Preferences were most stable concerning resuscitation and least stable concerning mechanical ventilation. In only a few instances we found life-events or a change in quality of life could both increase or decrease odds to change preferences. CONCLUSION: Preferences concerning continuing or forgoing treatment at the end of life are stable for a majority of people with ADs, which supports their validity. PRACTICE IMPLICATIONS: The value of on-going communication about preferences between patients and caregivers is confirmed by our findings concerning differences in stability between treatments and the association between stability of preferences and life-events or quality of life.

Irremediable Psychiatric Suffering in the Context of Physician-assisted Death: A Scoping Review of Arguments: La souffrance psychiatrique irrémédiable dans le contexte du suicide assisté : Une revue étendue des arguments.

OBJECTIVES: Physician-assisted death (PAD), also known as medical assistance in dying, of patients with a psychiatric disorder (PPD) is a global issue of debate. In most jurisdictions that allow PAD, irremediable suffering is a legal requirement, how to apply the concept of irremediability to PPD remains challenging. The aim of this article is to identify the main arguments concerning irremediability in the debate about PAD of PPD and give directions for further moral deliberation and empirical research. METHODS: Systematic searches in MEDLINE, Embase, and PsycINFO were combined with 4 additional search strategies. All conceptual-ethical articles, quantitative and qualitative empirical studies, guidelines, case reports, and commentaries that met the inclusion criteria were included, and a qualitative data synthesis was used to identify recurring themes within the literature. The study protocol was preregistered at the Open Science Framework under registration code: thjg8. RESULTS: A total of 50 articles met the inclusion criteria. Three main arguments concerning irremediability were found in the debate about PAD of PPD: uncertainty, hope, and treatment refusal. CONCLUSIONS: Uncertainty about irremediability is inevitable, so which level of certainty is morally required should be the subject of moral deliberation. Whether PAD induces or resolves hopelessness is an empirical claim that deserves clarification. Treatment refusal in search of PAD raises questions about treatment efficacy in this patient group and about decision-making in the context of the physician-patient relationship. Going forward, more attention should be given to epidemiological research and to specific challenges posed by different psychiatric disorders.

Systematic scoping review of the concept of 'genetic identity' and its relevance for germline modification.

EU legislation prohibits clinical trials that modify germ line 'genetic identity'. 'Genetic identity' however, is left undefined. This study aims to identify the use of the term 'genetic identity' in academic literature, and investigate its relevance for debates on genetic modification. A total of 616 articles that contained the term were identified. Content analysis revealed that the term was used in various and contradicting ways and a clear understanding of the term is lacking. This review demonstrates that the EU legislation is open to interpretation, because of the diversity of meaning with which 'genetic identity' is currently used. Because of the diversity of meaning with which 'genetic identity' is used and understood, further reflection is needed. This requires further medical, legal, ethical and social debate and a coordinated response at both a European and a global level.

A Qualitative Study on Experiences and Perspectives of Members of a Dutch Medical Research Ethics Committee.

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee (MREC) regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members.