Digital advance care planning with severe mental illness: a retrospective observational cohort analysis of the use of an electronic palliative care coordination system.

BACKGROUND: People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy. METHOD: A retrospective observational cohort analysis was completed of CMC records created 01/01/2010-31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients' statements of preference. RESULTS: 1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of 'years' and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice. DISCUSSION: Compared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved. CONCLUSIONS: This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice.

Advance Statements for Black African and Caribbean people (AdStAC): protocol for an implementation study.

BACKGROUND: The UK government committed to legislating for Advance Choice Documents/Advance Statements (ACD/AS) following their recommendation by the Independent Review of the MHA (2018). ACDs/AS are yet to be implemented in routine practice despite evidence and high demand; they are associated with improved therapeutic relationships and a reduction (25%, RR 0.75, CI 0.61-0.93) in compulsory psychiatric admission. Barriers to their implementation are well documented, ranging from low knowledge levels to logistical challenges in accessing the content during episodes of acute care. In the UK this is an issue for Black people, who experience detention rates disproportionately (over three times) higher than those of White British people and have poorer care experiences and outcomes. ACDs/AS allow for Black people to have their concerns heard by mental health professionals in a care system where they often feel their views are ignored. AdStAC aims to improve Black service users' experiences in mental health services in South London by co-producing and testing an ACD/AS implementation resource with Black service users, mental health professionals and carers/supporters of Black service users. METHODS/DESIGN: The study will take place in South London, England over three phases: 1) formative work through stakeholder workshops; 2) co-production of resources through a consensus development exercise and working groups; and 3) testing of the resources using quality improvement (QI) methods. A lived experience advisory group, staff advisory group and project steering committee will support the study throughout. The implementation resources will comprise: advance choice document/advance statement (ACD/AS) documentation, stakeholder trainings, a manual for mental health professionals to facilitate the processes of creating and revising advance statements, and informatics development. DISCUSSION: The implementation resources will help increase the likelihood of the new mental health legislation in England being implemented effectively; through aligning evidence-based medicine, policy and law to effectively provide positive clinical, social and financial outcomes for Black people, the National Health Service (NHS) and wider society. This study will likely benefit a wider group of people with severe mental illness, as when marginalised groups who are least engaged, can be supported with these strategies, then the strategies are likely to work for others.

Outcome Bias in Clinical Negligence Medico-legal Cases.

Independent medical experts provide reports in clinical negligence claims brought against doctors and other health care professionals. They are asked to provide an opinion on whether the doctor has breached their duty of care to the patient, commonly described as the "Bolam Principle". By the time a patient litigates against a health care professional, the clinical sequence and outcome are known. Experts provide their opinions with the benefit of this knowledge. To determine whether knowledge of the outcome affects the expert's opinion, 42 independent general practice experts were asked to indicate whether a general practitioner had breached their duty of care in six clinical case scenarios. 21 were told the clinical outcome. Experts who knew the outcome were less likely to support the general practitioner's course of action, although this did not reach statistical significance. General practitioners demonstrated considerable "dove" or "hawk" variability when giving opinions on the same scenario.

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.

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.

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.

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.

"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.

Prevalence of treatment-resistant psychoses in the community: A naturalistic study.

BACKGROUND: Treatment-resistant schizophrenia (TRS) is a major cause of disability. Clozapine is currently the only antipsychotic medication licensed for its treatment. However, the rate of treatment resistance among outpatients with schizophrenia or other psychoses, and the rate of use of clozapine among them, is not known. AIMS: The aims of this study are (a) to determine the point prevalence of treatment-resistant psychosis in a community sample, and (b) to determine the number of patients with TRS who have never had a clozapine trial. METHOD: Clinico-demographic data were extracted from the case notes for 202 patients from two community mental-health teams. RESULTS: We found that 56% (99/176) had a diagnosis of TRS, and 52% (51/99) of these patients had never been treated with clozapine. Patients of non-white ethnicity were less likely to have had a clozapine trial (p=0.009). The point prevalence of treatment resistance within the bipolar affective disorder sample was 19% (5/26). CONCLUSION: These findings suggest that TRS is common in the community mental-health team, and a large proportion of these patients have not received clozapine. These findings indicate that identifying and treating treatment resistance should be a focus of community services for schizophrenia.

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.

Complementary Feeding Practices for South Asian Young Children Living in High-Income Countries: A Systematic Review.

Sub-optimal nutrition among South Asian (SA) children living in high-income countries is a significant problem. High rates of obesity have been observed in this population, and differential complementary feeding practices (CFP) have been highlighted as a key influence. Our aim was to undertake a systematic review of studies assessing CFP in children under two years of age from SA communities living in high-income countries, including dietary diversity, timing, frequency and promotors/barriers. Searches covered January 1990⁻July 2018 using MEDLINE, EMBASE, Global Health, Web of Science, BanglaJOL, OVID Maternity and Infant Care, CINAHL, Cochrane Library, POPLINE and World Health Organisation (WHO) Global Health Library. Eligible studies were primary research on CFP in SA children aged 0⁻2 years. Search terms were "children", "feeding" and "South Asian", and derivatives. Quality appraisal used the Evidence for Policy and Practice Information (EPPI) Weight of Evidence scoring. From 50,713 studies, 13 were extracted with ten from the UK, and one each from the USA, Canada and Singapore. Sub-optimal CFP were found in all studies. All ten studies investigating timing reported complementary feeding (CF) being commenced before six months. Promoters/barriers influencing CFP included income, lack of knowledge, and incorrect advice. This is the first systematic review to evaluate CFP in SA children living in high-income countries and these findings should inform the development of effective interventions for SA infants in these settings.

Health Education and Activity - Lessening The Inequalities in mental health (HEA - LTI mental health).

Patients suffering from mental health illness have considerably more physical health disease burden than the rest of the population and are more likely to die 10 to 20 years younger compared with their peers. Diabetes, cardiovascular and respiratory disease have been recognised as contributing factors to premature death. Furthermore patients with severe mental illness undertake lower levels of physical activity. The aim of the project was therefore to address the inequalities in physical health that affect patients with mental health illness through designing and implementing a sustainable, transferable, patient-centred education and activity intervention. The objective of the project was to increase patient motivation to change behaviour as a result of physical health interventions by increasing patients' physical health understanding, motivation to change their physical health behaviour, motivation to do exercise and by reducing their anxiety. The method used was a prospective cohort study in four eighteen bed psychosis inpatient units. The units were across two large London hospitals in one Hospital Trust involving male and female inpatients with a range of mental health issues. The intervention was comprised of two components. The first component was a weekly 45 minute teaching group designed in collaboration with patients focusing on the key domains that affect the physical health of mental health patients. Four discussion domains (heart health, diabetes and weight, smoking and lung disease, cancer screening and substance misuse) were undertaken, with each cycle lasting four weeks. The second component was a weekly 45 minute exercise group ('normalisation activity') in collaboration with patients and the multidisciplinary team. The intervention was evaluated at the end of each cycle and four cycles in total took place. Weekly pre and post intervention measures were undertaken comprising of a self reported change in understanding, motivation to change physical health behaviours, confidence to change, anxiety and motivation to exercise. The result was a 26% improvement in self-reported understanding across the four domains following teaching. Furthermore patient anxiety reduced by on average 35%, self-reported motivation to change increased by 20%, motivation to do exercise by 26% and confidence to change by 16% as a result of the intervention. The authors conclude that a collaborative approach to education and activity between the Multidisciplinary Team (MDT) and service user results in sustained improvement in understanding of physical health, motivation to change behaviour and to do exercise. It also results in improved confidence and reduced anxiety.