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.

Corrigendum: UP'S: A Cohort Study on Recovery in Psychotic Disorder Patients: Design Protocol.

[This corrects the article DOI: 10.3389/fpsyt.2020.609530.].

Coping with social consequences of disease-related symptoms in patients with a metastatic small intestinal neuroendocrine tumour: A qualitative study.

Patients with small intestine neuroendocrine tumours (SINETs) face various disease-related symptoms that can affect their social functioning and quality of life. The present study aimed to explore the social consequences of disease-related symptoms in patients with a metastatic SINET and to develop a theory on how these patients experience their disease. Patients were eligible when they were diagnosed with a metastatic SINET between 2009 and 2016 and were younger than 60 years of age during diagnosis, and had a good functional performance status. Semi-structured interviews were conducted between January and June 2018. Data were transcribed and analysed independently by two researchers using grounded theory. Data saturation was reached at 10 interviews and, in total, 12 patients participated. A core component that arose from the interviews was resilience in the face of social consequences of having a metastatic SINET. Prominent physical symptoms were fatigue, diarrhoea and flushes. All of these symptoms were associated with limitations to function in work-related and social activities, as well as feelings of embarrassment and shame. Adaptive strategies, such as careful planning, or focusing on the perspective to live well with a neuroendocrine tumour, helped patients to experience the consequences as less burdensome. Other helpful factors that were identified constituted social support, engaging in meaningful activities and financial stability. Patients with a metastatic SINET experienced social consequences of disease-related symptoms in daily life, although they were able to attenuate the burden of these consequences by using adaptive problem-based, emotion-based and meaning-based coping strategies. Clinicians could explore the perceived consequences and educate patients about adaptive strategies.

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.

The personal motif in naturalistic case study research: developing "innerstandings" in woman's compulsive behaviour.

Purpose: The purpose of this article is to show case study research focused on persons as a case and our personal engagement with the case can improve our innerstandings and understanding of person-centred care. Method: We present the methodology and epistemology of naturalistic case study research and illuminate this approach with the case study of Ellen, a young, Dutch, white-middle class woman with a compulsive disorder. We combine naturalistic case study research with the personal narratives of those involved in the research, including ourselves, and interpreted through a feminist and gender lens. Results: The case study research enhanced the personal and mutual understanding of all involved, including the researchers. Feminist and gender theory revealed the hidden personal motif for the choice of the case, and led to a re-viewing of the original story, offering a re-storying. Conclusion: We conclude that the personal motif as well as the use of our personal experiences to understand the case deserve more attention in case study research to address the complex interplay of social and intrapsychic dimensions, and develop more in-depth innerstandings for all engaged.

To continue or not to continue? Antipsychotic medication maintenance versus dose-reduction/discontinuation in first episode psychosis: HAMLETT, a pragmatic multicenter single-blind randomized controlled trial.

BACKGROUND: Antipsychotic medication is effective for symptomatic treatment in schizophrenia-spectrum disorders. After symptom remission, continuation of antipsychotic treatment is associated with lower relapse rates and lower symptom severity compared to dose reduction/discontinuation. Therefore, most guidelines recommend continuation of treatment with antipsychotic medication for at least 1 year. Recently, however, these guidelines have been questioned as one study has shown that more patients achieved long-term functional remission in an early discontinuation condition-a finding that was not replicated in another recently published long-term study. METHODS/DESIGN: The HAMLETT (Handling Antipsychotic Medication Long-term Evaluation of Targeted Treatment) study is a multicenter pragmatic single-blind randomized controlled trial in two parallel conditions (1:1) investigating the effects of continuation versus dose-reduction/discontinuation of antipsychotic medication after remission of a first episode of psychosis (FEP) on personal and social functioning, psychotic symptom severity, and health-related quality of life. In total 512 participants will be included, aged between 16 and 60 years, in symptomatic remission from a FEP for 3-6 months, and for whom psychosis was not associated with severe or life-threatening self-harm or violence. Recruitment will take place at 24 Dutch sites. Patients are randomized (1:1) to: continuation of antipsychotic medication until at least 1 year after remission (original dose allowing a maximum reduction of 25%, or another antipsychotic drug in similar dose range); or gradual dose reduction till eventual discontinuation of antipsychotics according to a tapering schedule. If signs of relapse occur in this arm, medication dose can be increased again. Measurements are conducted at baseline, at 3, and 6 months post-baseline, and yearly during a follow-up period of 4 years. DISCUSSION: The HAMLETT study will offer evidence to guide patients and clinicians regarding questions concerning optimal treatment duration and when to taper off medication after remission of a FEP. Moreover, it may provide patient characteristics associated with safe dose reduction with a minimal risk of relapse. TRIAL STATUS: Protocol version 1.3, October 2018. The study is active and currently recruiting patients (since September 2017), with the first 200 participants by the end of 2019. We anticipate completing recruitment in 2022 and final assessments (including follow-up 3.5 years after phase one) in 2026. TRIAL REGISTRATION: European Clinical Trials Database, EudraCT number 2017-002406-12. Registered 7 June 2017.

UP'S: A Cohort Study on Recovery in Psychotic Disorder Patients: Design Protocol.

Recovery is a multidimensional concept, including symptomatic, functional, social, as well as personal recovery. The present study aims at exploring psychosocial and biological determinants of personal recovery, and disentangling time-dependent relationships between personal recovery and the other domains of recovery in a sample of people with a psychotic disorder. A cohort study is conducted with a 10-year follow-up. Personal recovery is assessed using the Recovering Quality of Life Questionnaire (ReQoL) and the Individual Recovery Outcomes Counter (I.ROC). Other domains of recovery are assessed by the Positive and Negative Symptom Scale Remission (PANSS-R), the BRIEF-A and the Social Role Participation Questionnaire-Short version (SRPQ) to assess symptomatic, functional and societal recovery, respectively. In addition, multiple biological, psychological, and social determinants are assessed. This study aims to assess the course of personal recovery, and to find determinants and time-dependent relationships with symptomatic, functional and societal recovery in people with a psychotic disorder. Strengths of the study are the large number of participants, long duration of follow-up, multiple assessments over time, extending beyond the treatment trajectory, and the use of a broad range of biological, psychological, and social determinants.

Competence in chronic mental illness: the relevance of practical wisdom.

The concept of competence is central to healthcare because informed consent can only be obtained from a competent patient. The standard approach to competence focuses on cognitive abilities. Several authors have challenged this approach by emphasising the role of emotions and values. Combining cognition, emotion and values, we suggest an approach which is based on the notion of practical wisdom. This focuses on knowledge and on determining what is important in a specific situation and finding a balance between various values, which are enacted in an individual's personal life. Our approach is illustrated by two cases of patients with obsessive-compulsive disorder.