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in capacity assessment, restricted therapeutic flexibility, scarce resources, disappointment due to noncompliance, and outdated content.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.

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.

Mother and Baby Units matter: improved outcomes for both.

BACKGROUND: Mother and Baby Units (MBUs) are usually preferred by patients and clinicians. Current provision is limited, although expansion is in progress. To ensure successful investment in services, outcome measurement is vital. AIMS: To describe maternal outcomes, mother-infant outcomes and their relationship in one MBU. METHOD: Paired maternal Brief Psychiatric Rating Scale (BPRS) scores, Health of the Nation Outcome Scales (HoNOS) scores and Crittenden CARE-Index (CCI) mother-infant interaction data were collected at admission and discharge. RESULTS: There were significant improvements in BPRS (n = 152), HoNOS (n = 141) and CCI (n = 62) scores across diagnostic groups. Maternal BPRS scores and mother-infant interaction scores were unrelated. Improvement in maternal HoNOS scores was associated with improved maternal sensitivity and reduction in maternal unresponsiveness and infant passiveness. CONCLUSIONS: Positive outcomes were achieved for mothers and babies across all diagnostic groups. Reduction in maternal symptoms, as measured by BPRS, does not necessarily confer improvement in mother-infant interaction. MBU treatment should focus on both maternal symptoms and mother-infant interaction. DECLARATION OF INTEREST: None.

Perinatal interventions for mothers and fathers who are survivors of childhood sexual abuse.

Childhood sexual abuse (CSA) is a worldwide problem with severe long-term consequences. A history of CSA can impact the childbearing experience of mothers and fathers; affecting their mental health, parenting skills and compromising infant development. Nonetheless, the perinatal period offers huge opportunity for intervention and hope. This literature review collates evidence for perinatal psychosocial interventions targeting both mothers and fathers who are survivors of CSA. Publications dating from 1970 to June 2016 were searched using Medline, Maternity and Infant Health, PsychINFO, PsychArticles, PubMed and the International Bibliography of the Social Sciences (IBSS). There were no perinatal interventions that considered the needs of survivor fathers. Sixteen publications on 9 psychosocial perinatal interventions for CSA survivors were identified. However, no sub-analyses specific to CSA survivors were reported. Trauma-specific perinatal interventions drew from a range of theoretical models and varied widely in format. Generally interventions were associated with improvements in maternal mental health, parenting competence, infant attachment security and positive public health outcomes. They were safe and feasible to implement, acceptable to parents and therapist, and therapists were able to implement protocols with adequate fidelity. Yet current data is hampered by small sample size, inconsistent reporting of CSA rates and outcome measures, scarcity of observational data and longer-term follow-up. Intervention modifications are proposed for CSA survivors in view of their unique childbearing experiences.