Opportunities and challenges of self-binding directives: an interview study with mental health service users and professionals in the Netherlands (original) (raw)
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European Psychiatry
Background: Self-binding directives (SBDs) are psychiatric advance directives that include a clause in which mental health service users consent in advance to involuntary hospital admission and treatment under specified conditions. Medical ethicists and legal scholars identified various potential benefits of SBDs but have also raised ethical concerns. Until recently, little was known about the views of stakeholders on the opportunities and challenges of SBDs. Aims: This article aims to foster an international exchange on SBDs by comparing recent empirical findings on stakeholders' views on the opportunities and challenges of SBDs from Germany, the Netherlands, and the United Kingdom. Method: Comparisons between the empirical findings were drawn using a structured expert consensus process. Results: Findings converged on many points. Perceived opportunities of SBDs include promotion of autonomy, avoidance of personally defined harms, early intervention, reduction of admission length, improvement of the therapeutic relationship, involvement of trusted persons, avoidance of involuntary hospital admission, addressing trauma, destigmatization of involuntary treatment, increase of professionals' confidence, and relief for proxy decisionmakers. Perceived challenges include lack of awareness and knowledge, lack of support, undue influence, inaccessibility during crisis, lack of cross-agency coordination, problems of interpretation, difficulties in capacity assessment, restricted therapeutic flexibility, scarce
Frontiers in Psychiatry
PurposeSelf-binding directives (SBDs) are a special type of psychiatric advance directive in which mental health service users can consent in advance to involuntary hospital admission and involuntary treatment during future mental health crises. This study presents opportunities and risks of SBDs reported by users with bipolar disorder, family members of people with bipolar disorder, professionals working with people with bipolar disorder and researchers with expertise in mental health ethics and law.MethodsSeventeen semi-structured interviews with users, family members and professionals, and one focus group with five researchers were conducted. The data was analyzed using qualitative content analysis.ResultsSix opportunities and five risks of SBDs were identified. The opportunities were promotion of autonomy and self-efficacy of users, relief of responsibility for family members, early intervention, reduction of (perceived) coercion, positive impact on the therapeutic relationship ...
British Journal of Psychiatry, 2005
BackgroundEstablished legal mandates and high expectations for psychiatric advance directives are not matched by empirical evidence documenting their actual implementation.AimsTo explore the interests, concerns and planning activities of informed mental health service users contemplating such directives.MethodStandard qualitative research techniques were used: field observations, interviews, focus groups, archival research and key informant interviews; 33 persons participated in the interviews and focus groups. Transcripts were coded and analysed for thematic content, and results were member-checked.ResultsTraining set in motion labour-intensive projects: conceptualising how a psychiatric advance directive would work in one's life, mobilising resources, reviewing past experiences and assessing risks. Especially meaningful was the prospect of being treated as a responsible agent in future interactions with the mental health system.ConclusionsAdvance directives are best thought of...
The Lancet Psychiatry, 2021
Background Self-binding directives instruct clinicians to overrule treatment refusal during future severe episodes of illness. These directives are promoted as having the potential to increase autonomy for individuals with severe episodic mental illness. Although lived experience is central to their creation, the views of service users on selfbinding directives have not been investigated substantially. This study aimed to explore whether reasons for endorsement, ambivalence, or rejection given by service users with bipolar disorder can address concerns regarding self-binding directives, decision-making capacity, and human rights. Methods This qualitative study used data from an internet-based survey distributed to the mailing list of the UK charity Bipolar UK, which contained multiple closed and open questions on advance decision making for patients with bipolar disorder. We included participants who reported that they have been diagnosed with bipolar disorder by a professional (doctor or psychiatrist). In a previous study, quantitative analysis of a closed question about self-binding directives had shown endorsement among a high proportion of participants with bipolar disorder who completed the survey. In this study, we did a thematic analysis of responses from those participants who answered a subsequent open question about reasons for their view. Research was done within a multidisciplinary team, including team members with clinical, legal, and ethical expertise, and lived experience of bipolar disorder. Ideas and methods associated with all these areas of expertise were used in the thematic analysis to gain insight into the thoughts of individuals with bipolar disorder about self-binding directives and associated issues.
2007
Psychiatric advance directives (PADs) are legal tools that allow competent individuals to declare preferences for future mental health treatment when they may not be capable of doing so as a result of a psychiatric crisis. PADs allow individuals to maintain self-determination during times when they are most vulnerable to loss of autonomy and in need of assistance to make their preferences known and honored. This article describes the content of twenty-eight open-ended, semi-structured qualitative interviews of adults with PADs who have experienced psychiatric crises. The qualitative analysis revealed three major themes from the interviews: (1) PADs as tools for empowerment and self-determination, (2) limited knowledge of PADs among service providers; and (3) difficulties communicating PADs to inpatient staff. In general, many participants expressed enthusiasm of the implementation of PADs but concern regarding clinicians' general lack of awareness about them. Additionally, some consumers discussed discomfort in even mentioning that they had a PAD to clinicians for fear of a negative response from them, or some type of involuntary treatment during their hospitalization. However, participants consistently viewed PADs as a positive tool to promote autonomy with the potential to facilitate stronger patient-provider relationships. Therefore, when working with individuals in psychiatric crisis who have a PAD, and who have never before experienced a sense of control over their own treatment, clinicians must recognize the potential troubling disequilibrium this sense of control may engender. In sum, though the most significant challenges facing the implementation of PADs involve clinicians' familiarity with and education about PADs, much promise for the future growth of PADs lies in the benefits perceived by the patients. Kim et al.
2014
Although clinical and organisational benefits have been expected from Psychiatric Advance Directives (PADs), their take-up rates remain low and their evaluation disappointing. The endorsement of PADs by stakeholders is decisive for their use and understanding stakeholders' preferences for implementation is crucial. A Multinomial Discrete Choice analysis was carried out of options for designing, completing, and honouring PADs, with a view to enhancing user autonomy, therapeutic alliance, care coordination, and feasibility. Although autonomy underlies the whole process, the criteria determining options varied with the stage of the intervention. These criteria should be taken into account in future PAD intervention and evaluation processes.
Administration and Policy in Mental Health and Mental Health Services Research, 2010
The aim of this study was to measure expert consensus on the implementation of Psychiatric Advance Directives (PADs) within the Veterans Health Administration. We conducted a two-round Delphi study with 55 panelists including consumers, caregivers, mental health providers and researchers. For a number of items where no positive or negative consensus was reached we found differences between the views of consumers and non-consumers, reflecting consumer's preferences for nonmedical settings for completion and assistance with completion independent of the treatment team. Thus, the principle of consumer choice that applies to MHAD content should also be applied to the process of completion offered.
Psychiatric advance directives: A tool for consumer empowerment and recovery
Psychiatric Rehabilitation Journal, 2007
Individuals with psychiatric disabilities identify choice and self-direction as central elements of recovery. During times of psychiatric crisis people may experience a frightening loss of choice and self-direction, which can be damaging and traumatic. Psychiatric advance directives (PADs) are legal documents created to address this loss of autonomy and choice during crises by allowing individuals to communicate in the present wishes for care during a future crisis. This paper examines the ways in which PADs support and can be a tool for recovery and discusses future recovery-oriented directions for PAD research and intervention.