Shades of grey: choice, control and capacity in alcohol-related brain damage.

Liaison psychiatrists have identified that conducting capacity assessments in general hospital patients with alcohol-related brain damage (ARBD) can be challenging. This educational article uses the fictitious case of a man with ARBD, alcohol dependence and significant self-neglect, focusing on assessment of his capacity to decide about moving into a care home on discharge. We provide an overview of clinical, legal and ethical literature relevant to decision-making and capacity assessment in individuals with ARBD, with the aim of guiding clinicians approaching complex capacity assessments.

Distributed rights protection: The 2000 Hague Convention on the International Protection of Adults and the challenge of securing fundamental rights across borders.

The 2000 Hague Convention on the International Protection of Adults ('the 2000 Convention') entered into force on 1 January 2009, is cast as a private international law convention (i.e. one providing tools to minimise procedural, debates about cross-border matters affecting individuals). However, in little-known, and even less explored fashion, it has significant implications for the exercise of both administrative and legal powers by States over those in their territory in zones that are conventionally held close to the metaphorical heart of State power, for instance those experiencing mental ill health, or with impaired decision-making capacity. Even less explored are the consequences for the individuals at the centre of such situations, in particular as regards the protection of their fundamental rights. As we examine in this paper, focusing on both problems of abduction and of cross-border placement into circumstances of deprivation of liberty, such protection has to be distributed between jurisdictions; we suggest that this is a phenomenon which requires to be addressed in a transparent fashion, so that all concerned can be clear as to the implications for its effectiveness.

Interpersonal influences on decision-making capacity: a content analysis of court judgments.

For many purposes in England and Wales, the Court of Protection determines whether a person has or lacks capacity to make a decision, by applying the test within the Mental Capacity Act 2005. This test is regularly described as a cognitive test with cognitive processes discussed as internal characteristics. However, it is unclear how the courts have framed interpersonal influence as negatively impacting upon a person's decision-making processes in a capacity assessment context. We reviewed published court judgments in England and Wales in which interpersonal problems were discussed as relevant to capacity. Through content analysis, we developed a typology that highlights five ways the courts considered influence to be problematic to capacity across these cases. Interpersonal influence problems were constructed as (i) P's inability to preserve their free will or independence, (ii) restricting P's perspective, (iii) valuing or dependence on a relationship, (iv) acting on a general suggestibility to influence, or (v) P denying facts about the relationship. These supposed mechanisms of interpersonal influence problems are poorly understood and clearly merit further consideration. Our typology and case discussion are a start towards more detailed practice guidelines, and raise questions as to whether mental capacity and influence should remain legally distinct.

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.

Mental capacity-why look for a paradigm shift?

Challenges to the legitimacy of mental capacity over the past 10 years have been spearheaded by the Committee on the Rights of Persons with Disabilities, the treaty body for the UN Convention on the Rights of Persons with Disabilities (CRPD). This challenge has been asserted to have produced a 'paradigm shift'. In this article, we examine why that interpretation has had such limited traction in the legal policy arena, and whether it should have traction. We also analyse whether the Committee has subtly but importantly shifted its position. We then develop an argument that the true goal, compatible with the CRPD, is the satisfactory determination of whether a person has or lacks mental capacity to make or take a relevant decision. Our article contextualises multi-disciplinary, research-informed guidelines designed as a contribution to satisfactory determination. While our article is based upon the position in England and Wales, we suggest that our conclusions are of wider application.

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.

Difficult Capacity Cases-The Experience of Liaison Psychiatrists. An Interview Study Across Three Jurisdictions.

Background: Assessment of capacity for treatment and discharge decisions is common in the general hospital. Liaison psychiatrists are often asked to support the treating medical or surgical team in difficult capacity assessments. However, empirical research on identification and resolution of difficult capacity cases is limited. Some studies have identified certain patient, decisional, and interpersonal factors which cause difficulty, but no study has explored how these issues are resolved in practice. Our study therefore aimed to describe how experienced liaison psychiatrists identify and resolve difficult capacity cases in a general hospital setting. Methods: We carried out semi-structured interviews with 26 liaison psychiatrists from England, Scotland, and New Zealand, on their most difficult capacity cases. Thematic analysis was used to examine types of difficulty and how these were resolved in practice. Summaries were prepared and example quotes extracted to illustrate phenomena described. Results: We identified four types of difficulty in capacity assessment, spanning both clinical and ethical domains: 1) Difficulty determining whether the decision is the patient's own or driven by illness, 2) Difficulty in applying ethical principles, 3) Difficulty in avoiding personal bias, and 4) Procedural difficulties. The liaison psychiatrists presented as self-reflective and aware of challenges and pitfalls in hard cases. We summarized their creative strategies to resolve difficulty in assessment. Conclusion: Practitioners approaching difficult capacity cases require both clinical skills, e.g., to uncover subtle illness impairing decision-making and to consider interpersonal dynamics, and ethical skills, e.g., to negotiate the role of values and risks in capacity assessment. Education and training programmes should incorporate both aspects and could include the resolution strategies identified in our study. Practitioners, supported by health and social care systems, should work to develop self-aware and reflective capacity assessment practice.

Inequitable Access to Transplants: Adults With Impaired Decision-Making Capacity.

Inequitable access to deceased donor organs for transplantation has received considerable scrutiny in recent years. Emerging evidence suggests patients with impaired decision-making capacity (IDC) face inequitable access to transplantation. The "Ethical and Legal Issues" working group of the European Society of Transplantation undertook an expert consensus process. Literature relating to transplantation in patients with IDC was examined and collated to investigate whether IDC is associated with inferior transplant outcomes and the legitimacy of this healthcare inequality was examined. Even though the available evidence of inferior transplant outcomes in these patients is limited, the working group concluded that access to transplantation in patients with IDC may be inequitable. Consequently, we argue that IDC should not in and of itself be considered as a barrier to either registration on the transplant waiting list or allocation of an organ. Strategies for non-discrimination should focus on ensuring eligibility is based upon sound evidence and outcomes without reference to non-medical criteria. Recommendations to support policy makers and healthcare providers to reduce unintended inequity and inadvertent discrimination are set out. We call upon transplant centres and national bodies to include data on decision-making capacity in routine reporting schedules in order to improve the evidence base upon which organ policy decisions are made going forward.

Insight and equality: A systematic review and meta-analysis of socio-demographic associations.

BACKGROUND: Insight into illness is often used in clinical and legal contexts, for example, as evidence of decision-making capacity. However, it is unclear whether this disadvantages certain groups protected under equality legislation. To our knowledge, this question has yet to be addressed systematically. Therefore, the present study reviews empirical studies that look at the relationship between insight and sociodemographic variables. METHODS: A systematic search of six bibliographic databases (CENTRAL, CINAHL, Cochrane Library of Systematic Reviews, EMBASE, MEDLINE and PsycINFO) was conducted, which yielded 6,192 results. Study characteristics and outcomes (associations between insight and socio-demographic variables) were then extracted from 207 eligible studies. This included protected characteristics under the Equality Act (2010): age, sex, ethnicity, marital status and religion. Weighted confidence estimates were calculated and relevant moderators included in a random effects meta-analysis. A study protocol was registered prospectively on PROSPERO, ID: CRD42019120117. RESULTS: Insight was not strongly associated with any sociodemographic variable. Better insight was weakly but significantly associated with white ethnicity, being employed, younger age and more years of education. The age associations were mostly explained by relevant moderating variables. For people with schizophrenia, the associations between sociodemographic variables and insight were comparable to associations with decision making capacity. CONCLUSIONS: Our results suggest that insight is not strongly associated with any sociodemographic variables. Further research is needed to clarify potential associations, particularly with non-white ethnicity and proxies for social support.

Quality of life in elderly ICU survivors before the COVID-19 pandemic: a systematic review and meta-analysis of cohort studies.

OBJECTIVES: The influence of age on intensive care unit (ICU) decision-making is complex, and it is unclear if it is based on expected subjective or objective patient outcomes. To address recent concerns over age-based ICU decision-making, we explored patient-assessed quality of life (QoL) in ICU survivors before the COVID-19 pandemic. DESIGN: A systematic review and meta-analysis of cohort studies published between January 2000 and April 2020, of elderly patients admitted to ICUs. PRIMARY AND SECONDARY OUTCOME MEASURES: We extracted data on self-reported QoL (EQ-5D composite score), demographic and clinical variables. Using a random-effect meta-analysis, we then compared QoL scores at follow-up to scores either before admission, age-matched population controls or younger ICU survivors. We conducted sensitivity analyses to study heterogeneity and bias and a qualitative synthesis of subscores. RESULTS: We identified 2536 studies and included 22 for qualitative synthesis and 18 for meta-analysis (n=2326 elderly survivors). Elderly survivors' QoL was significantly worse than younger ICU survivors, with a small-to-medium effect size (d=0.35 (-0.53 and -0.16)). Elderly survivors' QoL was also significantly greater when measured slightly before ICU, compared with follow-up, with a small effect size (d=0.26 (-0.44 and -0.08)). Finally, their QoL was also marginally significantly worse than age-matched community controls, also with a small effect size (d=0.21 (-0.43 and 0.00)). Mortality rates and length of follow-up partly explained heterogeneity. Reductions in QoL seemed primarily due to physical health, rather than mental health items. CONCLUSIONS: The results suggest that the proportionality of age as a determinant of ICU resource allocation should be kept under close review and that subjective QoL outcomes should inform person-centred decision -aking in elderly ICU patients. PROSPERO REGISTRATION NUMBER: CRD42020181181.

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.

Dementia, Sexuality, and the Law: The Case for Advance Decisions on Intimacy.

Some individuals develop dementia and the invariable consequence of dementia is a decline in cognition and level of functioning. Despite the effects of this illness, people with dementia still seek intimacy and companionship as part of their expression of basic human instincts and have the right to equal enjoyment of relationships and privacy for such. At the same time, they have the right to be safeguarded against abuse. The law in England and Wales, in common with the majority, if not all, jurisdictions around the world is clear on the requirement for contemporaneous consent to sexual activity, thereby creating unmet needs for people with dementia who no longer have the capacity to consent to intimacy/sexuality. This creates an impetus to find ways to empower individuals with dementia to enjoy intimacy in a safe and lawful way and enable them to live well despite dementia. This article proposes an instrument known as the Advance Decision on Intimacy, in pursuit of the concept of precedent autonomy, to empower individuals to make decisions about how they would wish to express their sexuality at a material time in future when they would have lost the capacity to consent to such acts. While the article is framed by reference to English law, the principles are of wider relevance.

The social underpinnings of mental distress in the time of COVID-19 - time for urgent action.

We argue that predictions of a 'tsunami' of mental health problems as a consequence of the pandemic of coronavirus disease 2019 (COVID-19) and the lockdown are overstated; feelings of anxiety and sadness are entirely normal reactions to difficult circumstances, not symptoms of poor mental health.  Some people will need specialised mental health support, especially those already leading tough lives; we need immediate reversal of years of underfunding of community mental health services.  However, the disproportionate effects of COVID-19 on the most disadvantaged, especially BAME people placed at risk by their social and economic conditions, were entirely predictable. Mental health is best ensured by urgently rebuilding the social and economic supports stripped away over the last decade. Governments must pump funds into local authorities to rebuild community services, peer support, mutual aid and local community and voluntary sector organisations.  Health care organisations must tackle racism and discrimination to ensure genuine equal access to universal health care.  Government must replace highly conditional benefit systems by something like a universal basic income. All economic and social policies must be subjected to a legally binding mental health audit. This may sound unfeasibly expensive, but the social and economic costs, not to mention the costs in personal and community suffering, though often invisible, are far greater.

Isolation of patients in psychiatric hospitals in the context of the COVID-19 pandemic: An ethical, legal, and practical challenge.

Psychiatric inpatients are particularly vulnerable to the transmission and effects of COVID-19. As such, healthcare providers should implement measures to prevent its spread within mental health units, including adequate testing, cohorting, and in some cases, the isolation of patients. Respiratory isolation imposes a significant limitation on an individual's right to liberty, and should be accompanied by appropriate legal safeguards. This paper explores the implications of respiratory isolation in English law, considering the applicability of the common law doctrine of necessity, the Mental Capacity Act 2005, the Mental Health Act 1983, and public health legislation. We then interrogate the practicality of currently available approaches by applying them to a series of hypothetical cases. There are currently no 'neat' or practicable solutions to the problem of lawfully isolating patients on mental health units, and we discuss the myriad issues with both mental health and public health law approaches to the problem. We conclude by making some suggestions to policymakers.

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.

Capacity in the time of Coronavirus.

In the course of a few short weeks, many of the established legal frameworks relating to decision-making in England & Wales in respect of those with impaired decision-making capacity have been ripped up, or apparently rendered all but unusable. Although the Mental Capacity Act 2005 itself has not been amended, the impact of other legislation (especially the Coronavirus Act 2020) means that duties towards those with impaired decision-making capacity have been radically changed. This article reflects the experience of a practising barrister in England & Wales grappling with the impact of COVID-19 upon the Mental Capacity Act 2005 across a range of fields in the weeks after the world appeared to change in mid-March 2020.

"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.

Taking capacity seriously? Ten years of mental capacity disputes before England's Court of Protection.

Most of the late 20th century wave of reforms in mental capacity or competence law were predicated upon the so-called 'functional' model of mental capacity, asking not merely whether a person had a mental disorder or disability but rather whether they were capable of making a specific decision (or decisions) at a specific point of time. This model is now under sustained challenge, most notably from the Committee on the Rights of Persons with Disabilities, and this challenge has focused a spotlight on the difficulty of applying the legally 'neat' concepts of the functional model of mental capacity across the full complex spectrum of human life. This paper presents a review, in two parts, of the first ten years of the Court of Protection, a specialist mental capacity court in England and Wales which applies a functional model of mental capacity. The first part outlines the history of the functional model in England and Wales, and the development of this specialist mental capacity court (Court of Protection), created by the Mental Capacity Act 2005. The second part presents an empirical and case-based study of 40 published cases of capacity disputes presented to the Court of Protection, or to the Court of Appeal on appeal from the Court of Protection, during the first ten years of its existence. The authors found that in 70% of cases the subject of proceedings (or P) had either a learning disability or dementia, and the court ruled on P's capacity for a wide range of issues, most commonly residence, care and contact. The judge considered the support principle, or whether practical steps were taken to maximise P's capacity, in 23 of 40 (57.5%) cases. The subject P was determined to have capacity in 13 cases, to lack capacity in 22 cases, and in 5 cases P was found to have and lack capacity for different issues before the court. The functional inability to use or weigh relevant information was most commonly cited by the judge, being cited in all but 2 cases in which P was determined to lack capacity and inabilities were cited. The propensity for the system to learn was shown by an increase in the proportion of cases which considered the 'causative nexus' from 2013, when a Court of Appeal case emphasised that impairment must not merely be present alongside functional inability but must be the causal basis of inability. The authors conclude that whilst the Court of Protection is still on a learning curve, its work provides a powerful illustration of what taking capacity seriously looks like, both inside and outside the courtroom. The implications for judges, lawyers and psychiatrists that can be drawn from the study are generalisable to other comparable socio-legal frameworks in which mental capacity or competence plays a role and is likely to do so for the foreseeable future.