Self-binding directives in psychiatric practice: a systematic review of reasons.

Self-binding directives (SBDs) are an ethically controversial type of advance decision making involving advance requests for involuntary treatment. This study systematically reviewed the academic literature on psychiatric SBDs to elucidate reasons for and against their use in psychiatric practice. Full-text articles were thematically analysed within the international, interdisciplinary authorship team to produce a hierarchy of reasons. We found 50 eligible articles. Reasons for SBD use were promoting service user autonomy, promoting wellbeing and reducing harm, improving relationships, justifying coercion, stakeholder support, and reducing coercion. Reasons against SBD use were diminishing service user autonomy, unmanageable implementation problems, difficulties with assessing mental capacity, challenging personal identity, legislative issues, and causing harm. A secondary finding was a clarified concept of capacity-sensitive SBDs. Future pilot implementation projects that operationalise the clarified definition of capacity-sensitive SBDs with safeguards around informed consent, capacity assessment, support for drafting, and independent review are required.

Opportunities and challenges of self-binding directives: A comparison of empirical research with stakeholders in three European countries.

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 duration, improvement of the therapeutic relationship, involvement of persons of trust, avoidance of involuntary hospital admission, addressing trauma, destigmatization of involuntary treatment, increase of professionals' confidence, and relief for proxy decision-makers. 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 resources, disappointment due to noncompliance, and outdated content. Stakeholders tended to focus on practical challenges and did not often raise fundamental ethical concerns. CONCLUSIONS: Stakeholders tend to see the implementation of SBDs as ethically desirable, provided that the associated challenges are addressed.

Preparing for Mental Health Act reform: Pilot study of co-produced implementation strategies for Advance Choice Documents.

Background Advance Decision Making (ADM) is strongly supported by stakeholders but implementation remains challenging. In England and Wales, implementation strategies are urgently required to prepare for the introduction of mental health 'Advance Choice Documents' (ACDs) as part of Mental Health Act reforms. We report on a pilot project which aimed to co-produce and evaluate implementation strategies for ACDs with those who experience fluctuating mental capacity in the context of bipolar. Methods A co-produced prototype ACD template was piloted in 'Plan, Do, Study Act' (PDSA) cycles. Implementation strategies were co-produced with participants and mapped onto the Expert Recommendations for Implementing Change (ERIC) framework. Strategies were evaluated during thematically analysed qualitative interviews. Results We piloted the template with 17 service users during 5 successive PDSA cycles and conducted 75 in depth interviews with stakeholders. Key strategies identified as accessible, appropriate and feasible were: interactive assistance from an independent 'supporter', a structured template and active offers of involvement to service users and informal carers. Conclusions Mental health professionals and organisations must prepare for increased expectations around mental health ADM. We recommend further pilot projects and the establishment of 'ACD workshops'. Resource is essential to fund independent 'supporters', training, network building and embedding ADM in clinical pathways.

Effectiveness of electroconvulsive therapy in patients lacking decision making capacity: A systematic review and meta-analysis.

BACKGROUND: Electroconvulsive therapy (ECT) is provided for patients with severe and often life-threatening illness, who lack decision making capacity to consent to treatment (DMC-T) in clinical settings. OBJECTIVE: The aim of this study is to summarize previous studies investigating clinical outcomes of ECT in patients lacking DMC-T. METHODS: A systematic review and meta-analysis of studies reporting clinical outcomes of ECT in patients lacking DMC-T with any psychiatric diagnoses was conducted. The primary outcome was clinical improvement. Secondary outcomes were cognitive outcomes and six month readmission rate. Hedges' g and odds ratios were calculated using a random-effects model. The protocol was registered in Open Science Framework (https://osf.io/rxjkm). RESULTS: Of 3552 identified articles, 41 studies (n = 1299) were included. Approximately 80% of patients lacking DMC-T responded to ECT, and part of the patients regained capacity to consent and consented to further treatment with ECT. A total of seven studies (n = 1081) were included for meta-analysis. Patients without DMC-T showed superior clinical improvement and less cognitive side effects compared with those with DMC-T, whereas the groups did not show any difference in readmission rate. Several clinical characteristics at baseline and ECT techniques were significantly different between the groups. CONCLUSION: ECT is equally, if not superiorly, effective in patients lacking DMC-T compared to patients with DMC-T. ECT can potentially enhance patients' autonomy, without increasing the risk of cognitive side effects. These results support the clinical and ethical legitimacy of ECT provision for patients with the most severe illness who lack DMC-T at start of treatment.

'Shock tactics', ethics and fear: an academic and personal perspective on the case against electroconvulsive therapy.

Despite extensive evidence for its effectiveness, electroconvulsive therapy remains the subject of fierce opposition from those contesting its benefits and claiming extreme harms. Alongside some reflections on my experiences of this treatment, I examine the case against electroconvulsive therapy and find that it appears to rest primarily on unsubstantiated claims about major ethical violations, rather than clinical factors such as effectiveness and risk.

Reasons for endorsing or rejecting self-binding directives in bipolar disorder: a qualitative study of survey responses from UK service users.

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 self-binding 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. FINDINGS: Between Oct 23, 2017, and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed the internet survey, with 565 individuals (154 men, 400 women, 11 transgender or other), predominantly white British, providing free-text answers to the open question. 463 (82%) of the 565 participants endorsed self-binding directives, of whom 411 (89%) describing a determinate shift to distorted thinking and decision making when unwell as their key justification. Responses indicating ambivalence (37 [7%) of the 565 responses) were dominated by logistical concerns about the drafting and implementation of self-binding directives, whereas those who rejected self-binding directives (65 [12%] of the 565 responses) cited logistical concerns, validity of their thinking when unwell, and potential contravention of human rights. INTERPRETATION: This study is, to our knowledge, the first large study assessing the reasons why mental health service users might endorse or reject the use of self-binding directives. The findings provide empirical support for introducing self-binding directives into mental health services as well as advance decision-making practice and policy, and might help address enduring ethical concerns surrounding possible implementation of the directive while a person retains decision-making capacity. The opinions expressed here in responses given by multiple service users with bipolar disorder challenge a prominent view within international disability rights debates that involuntary treatment and recognition of impaired mental capacity constitute inherent human rights violations. FUNDING: The Wellcome Trust.

Advance Decision Making in Bipolar: A Systematic Review.

INTRODUCTION: "Advance decision making" (ADM) refers to people planning for a future when they may lose the capacity to make decisions about treatment (decision making capacity for treatment or DMC-T). This can occur in a variety of physical and mental health scenarios. Statutory provision for ADM is likely to be introduced to mental health legislation in England and Wales, which will support planning for mental health crises. Conceptually, it may have particular utility for people with Bipolar Affective Disorder (bipolar) due to the pattern of rapid loss and then recovery of DMC-T during episodes of illness. Furthermore, ADM is recommended by clinical experts in bipolar. However, the empirical evidence base for ADM in bipolar is unclear. Therefore, a systematic review is required to collate available evidence and define future research directions. METHODS: A PRISMA concordant systematic review of empirical literature on the use of ADM in bipolar. RESULTS: We found 13 eligible articles which reported on 11 studies. Of the eligible studies 2 used a mixed methods design, 8 were quantitative descriptive studies and 1 was a randomised controlled trial. Outcomes of included studies fell into 4 categories: Interest in ADM, type of ADM preferred, barriers to completing ADM and impact of ADM. The available evidence suggests that people with bipolar are interested in engaging with ADM which is supported, collaborative and allows them to state treatment requests and refusals. CONCLUSIONS: Evidence in this area is limited. Clinicians should be aware that service users with bipolar are likely to value their support in creating ADM documents. In addition, it seems that people with bipolar may face fewer barriers and achieve greater success with ADM compared to those with other severe mental illnesses. Given the greater focus and likely demand for ADM following upcoming legal reform, further research is urgently needed to ensure available resources are most effectively targeted to achieve the best outcomes from ADM activities. This research should focus on clarifying: causal assumptions around ADM, the outcomes which are valued by key stakeholders, barriers to achieving these outcomes, stakeholder opinions on supporting 'self-binding' and the development and evaluation of models of ADM which are tailored for fluctuating DMC-T.

The PACT advance decision-making template: preparing for Mental Health Act reforms with co-production, focus groups and consultation.

BACKGROUND: Advance decision making (ADM) in mental health is supported by stakeholders but faces significant barriers. These must be overcome, not least to support the UK government's commitment to introduce statutory mental health ADM in England and Wales. AIMS: To build understanding and address the gap between aspirations for ADM and actuality, with feasible co-produced ADM resources. METHODS: We used focus groups and consultation to explore experience and views of stakeholders on ADM processes and materials. Discussions included feedback on an ADM template which was adapted accordingly throughout the research process. RESULTS: Between September 2017 and December 2019, 94 individuals, representing stakeholders advised on design and process of ADM, alongside wider discussion at stakeholder events. Collaborative ADM was universally supported. Valued outcomes were diverse and combining aspirations with practicality required resolving dilemmas. A prototype template and guidance, the PACT (Preferences and Advance decisions for Crisis and Treatment) was co-produced, designed to help manage fluctuating mental capacity through collaborative decision making. The PACT enables direct engagement with medico-legal frameworks, with provision to facilitate person-centred assessments, treatment refusals and requests. Resources including supported engagement and cross-agency awareness and accessibility were seen as essential. CONCLUSION: Our research confirms high stakeholder motivation to engage in ADM is hampered by multiple barriers. We identified enabling conditions for ADM and co-produced an ADM template and guidance which supports achievement of a range of valued outcomes. Further developments to support and evaluate the process of implementation are now needed to prepare for statutory change.

"Why have I not been told about this?": a survey of experiences of and attitudes to advance decision-making amongst people with bipolar.

Background: The idea that people with severe mental illness should be able to plan in advance for periods of illness as a means of enhancing autonomy has been long debated and is increasingly being enshrined in codes of practice and mental health legislation. It has been argued that the ethical imperative for this is especially pronounced in bipolar (BP), a condition in which sufferers often experience episodic crises interspersed with periods of wellness. However, there is a paucity of published research investigating experiences of advance decision making (ADM) in people with BP or their attitudes towards it. Methods: An online survey of BPUK's mailing list was conducted. 932 people with BP completed the survey (response rate 5.61%). Descriptive statistics and regression analysis were conducted to compare experience of with attitudes towards ADM and variables associated with interest in ADM. Results: A majority indicated a desire to plan care in advance of losing capacity (88%) but most had not done so (64%). High numbers of respondents expressed a wish to request as well as refuse treatment and most wanted to collaborate with psychiatrists, including on issues around self-binding. The most frequent motivation to utilise ADM was a desire to be more involved in mental health decisions. Interest in self-binding was associated with experience of compulsory treatment and trust in mental health services. Interest in refusals of all medication was associated with younger age and lack of trust in mental health services. Interest in ADM in general was associated with younger age but not educational level, ethnicity or gender. Conclusions: This study demonstrates an appetite for ADM amongst people with bipolar that is independent of educational status and ethnicity. As states reform their mental health laws, attention needs to be given to the distinctive attitudes toward ADM amongst people with bipolar.

Manic temporality.

Time-consciousness has long been a focus of research in phenomenology and phenomenological psychology. We advance and extend this tradition of research by focusing on the character of temporal experience under conditions of mania. Symptom scales and diagnostic criteria for mania are peppered with temporally inflected language: increased rate of speech, racing thoughts, flight-of-ideas, hyperactivity. But what is the underlying structure of temporal experience in manic episodes? We tackle this question using a strategically hybrid approach. We recover and reconstruct three hypotheses regarding manic temporality that were advanced and modeled by two pioneers of clinical phenomenology: Eugène Minkowski (1885-1972) and Ludwig Binswanger (1881-1966). We then test, critique, and refine these hypotheses using heterophenomenological methods in an interview-based study of persons with a history of bipolar and a current diagnosis of acute mania. Our conclusions support a central hypothesis due to Minkowski and Binswanger, namely, that disturbance in the formal structure of temporal experience is a core feature of mania. We argue that a suitably refined variant of Binswanger's model of disturbance in manic protention helps to explain a striking pattern of impaired insight and impaired reasoning in manic episodes.

Misevaluating the Future: Affective Disorder and Decision-Making Capacity for Treatment - A Temporal Understanding.

BACKGROUND: Within psychiatric practice and policy there is considerable controversy surrounding the nature and assessment of impairments of decision-making capacity (DMC) for treatment in persons diagnosed with affective disorders. We identify the problems of "cognitive bias" and "outcome bias" in assessment of DMC for treatment in affective disorder and aim to help resolve these problems with an analysis of how time is experienced in depression and mania. SAMPLING AND METHODS: We conducted purposeful sampling and a qualitative phenomenological analysis of interview data on patients with depression and mania, exploring temporal experience and decision-making regarding treatment. RESULTS: In both severe depression and mania there is a distinctive experience of the future. Two consequences can follow: a loss of evaluative differentiation concerning future outcomes and, relatedly, inductive failure. This temporal inability can compromise an individual's ability to appreciate or "use or weigh" treatment information. CONCLUSIONS: The decision-making abilities required for self-determination involve an ability to evaluate alternative future outcomes. Our results show that, within severe depression or mania, anticipation of future outcomes is inflexibly fixed at one end of the value spectrum. We therefore propose a temporal model of decision-making abilities, which could be used to improve assessment of DMC in affective disorder.

Unwell in hospital but not incapable: cross-sectional study on the dissociation of decision-making capacity for treatment and research in in-patients with schizophrenia and related psychoses.

BACKGROUND: Consent to research with decision-making capacity for research (DMC-R) is normally a requirement for study participation. Although the symptoms of schizophrenia and related psychoses are known to affect decision-making capacity for treatment (DMC-T), we know little about their effect on DMC-R.AimsWe aimed to determine if DMC-R differs from DMC-T in proportion and associated symptoms in an in-patient sample of people with schizophrenia and related psychoses. METHOD: Cross-sectional study of psychiatric in-patients admitted for assessment and/or treatment of schizophrenia and related psychoses. We measured DMC-R and DMC-T using 'expert judgement' clinical assessment guided by the MacArthur Competence Assessment Tool for Clinical Research, the MacArthur Competence Assessment Tool for Treatment and the legal framework of the Mental Capacity Act (2005), in addition to symptoms of psychosis. RESULTS: There were 84 participants in the study. Half the participants had DMC-R (51%, 95% CI 40-62%) and a third had DMC-T (31%, 95% CI 21-43%) and this difference was statistically significant (P < 0.01). Thought disorder was most associated with lacking DMC-R (odds ratio 5.72, 95% CI 2.01-16.31, P = 0.001), whereas lack of insight was most associated with lacking DMC-T (odds ratio 26.34, 95% CI 3.60-192.66, P = 0.001). With the exception of improved education status and better DMC-R, there was no effect of sociodemographic variables on either DMC-R or DMC-T. CONCLUSIONS: We have shown that even when severely unwell, people with schizophrenia and related psychoses in in-patient settings commonly retain DMC-R despite lacking DMC-T. Furthermore, different symptoms have different effects on decision-making abilities for different decisions. We should not view in-patient psychiatric settings as a research 'no-go area' and, where appropriate, should recruit in these settings.Declaration of interestNone.

Psychosis and identity: Alteration or loss?

The onset of psychotic disorders often brings major changes to an individual, which, for some, are never fully reversed and remain a dominant force. Despite such changes, the individual still experiences themselves as a continuous person and must find some way to assimilate these shifts into their self-concept. From a philosophical perspective, the various models of continuing identity all depend upon some notion of fundamental stability, which seems a poor fit for the trajectory associated with psychotic disorders. This article will explore, in more depth, how the transitions that accompany psychotic disorders present a challenge to conventional and philosophical notions of selfhood. If we are not simply to judge psychotic disorders as bringing about a loss of selfhood, we will need an alternative model of identity to use in this context.