Perspectives on advance research directives from individuals with mild cognitive impairment and family members: a qualitative interview study.

Background: Advance research directives (ARDs) provide a promising way to involve individuals with mild cognitive impairment (MCI) in research decisions before they lose the capacity to consent. At the same time, the views of people with MCI on ARDs are underexplored. This study assesses the perceptions of people with MCI and family members on the benefits and challenges associated with ARDs. Aims: The aim of this study was to investigate the perspectives of individuals with MCI and family members of individuals with MCI on ARDs. We focus specifically on willingness to participate in nontherapeutic research, understanding of ARDs and the ethical considerations involved. Methods: Thirteen open-ended, face-to-face interviews were conducted using a semi-structured format. Seven interviews were conducted with individuals with MCI, and six with family members of individuals with MCI. The narratives were transcribed verbatim and qualitative content analysis was carried out. Results: Research participation and ARDs were viewed positively, largely based on altruistic motives and the desire to contribute to society. The participants recognized the potential advantages of ARDs in reducing the decision-making burden on family members and maintaining personal autonomy. They also highlighted challenges in comprehending ARDs and navigating the complexities surrounding potential conflicts between current preferences versus preferences described in an ARD. Conclusions: ARDs were predominantly seen as valuable instruments that enable individuals with MCI to participate in research. This study provides insights into the reasons why affected individuals are interested in drafting ARDs. These insights can guide the development of supportive interventions that are tailored to assist individuals with MCI and their families in navigating ARD processes.

Decision-making capacity assessments in New Zealand and Australia: a systematised review.

In an ageing world with a growing prevalence of neurodegenerative disease and recent voluntary assisted dying laws in New Zealand and several Australian states, healthcare professionals are increasingly being relied upon to conduct decision-making capacity (DMC) assessments. There is no legislation in New Zealand or Australia to provide clear guidance on conducting DMC assessments. This systematised review aimed to examine the current processes, issues and debates within DMC assessments as detailed in Australasian literature. Six databases were searched: CINAHL, Scopus, Embase, Medline, PsycINFO and Google Scholar following PRISMA guidelines. A total of 33 articles were included in the review and, following a quality assessment, an inductive approach was used to determine key topics which were synthesised in the review. Five distinct issues were revealed, namely a lack of standardisation and guidelines in approaching DMC assessments, training and knowledge of DMC, professional roles, medical and psychiatric complexities and the medico-legal interface.

The two lives of the Mental Capacity Act: rethinking East-west binaries in comparative analysis.

The Mental Capacity Act 2005 in England and Wales and Singapore's Mental Capacity Act 2008 (which substantially transplants provisions from the former statute) might appear to be twins on paper, but they have gone on to lead very different lives. In this article, we examine how two broadly identical laws have taken on divergent identities within their respective jurisdictions when implemented and interpreted in the courtroom. We reveal and analyse differences in parliamentary intent concerning at what stage a person's decision-making agency is putatively empowered; judicial development of central concepts; underlying socio-cultural commitments; and outline opportunities for bi-directional learning in mental capacity law across both jurisdictions.

Legal aspects of dying and the community nurse.

In this month's Policy column, Iwan Dowie explores the legality behind caring for those approaching end of life.

Anticipatory declarations in obstetric care: a relational and spatial examination of patient empowerment, institutional impacts and temporal challenges.

Seeking an anticipatory declaration from the Court of Protection (CoP) to manage a risk of future loss of capacity in pregnant people during labour and delivery appears to be occurring more frequently. This article examines a growing case sample of recent CoP judgments in which anticipatory declarations have been sought and adopts a combined relational and spatial approach to question whether these types of anticipatory declarations empower patient autonomous choice, and to illuminate the complex web of relational, spatial, and temporal factors that hold influence over the way in which mental capacity law operates. Viewing such processes from both a patient and institutional perspective offers useful insights into the law's normative workings, boundaries, and constraints, and ultimately points to conclusions on the (in)effectiveness of anticipatory declarations as a legal mechanism for dealing with the risk of a patient losing capacity in the future. Moreover, however, taking a broader, spatial view signals the challenges posed by these cases to mental capacity legislation itself. The justifiability of the binary construct of capacity/incapacity has been challenged by some writers in this field, and this article offers further reflection on the integrity of this binary through its discussion of anticipatory orders for pregnant people.

Improving the systematic screening and documentation of mental capacity for patients with severe brain injury: The Mental Capacity Screening assessment tool (MCScreen).

For patients who may lack capacity, the Mental Capacity Act 2005 requires capacity to be assessed for each decision at the time that treatment is offered, but this is not practical for every element of basic care and intervention delivered to patients undergoing rehabilitation following acquired brain injury, especially if their needs are changing. In this quality improvement project, we introduced a system for screening Mental Capacity and documentation to identify patients with a) largely intact cognition for whom capacity may be reasonably be presumed, and b) those in prolonged disorders of consciousness who clearly lacked capacity for all decisions. This enabled the multidisciplinary team to concentrate on evaluation of capacity in the third group who had more nuanced ability and required detailed assessment or support for decision-making. Two rounds of audit demonstrated that implementation improved the consistency of assessment and documentation. Multicentre roll-out of this approach is now required.

Using Technology to Improve the Mental Capacity Assessment and Deprivation of Liberty Safeguards Process.

The process of mental capacity act (MCA) assessment and depravation of liberty safeguarding (DoLS) was identified as an area for improvement. The project aimed to ensure that patients admitted to hospital for care and treatment were appropriately assessed if there is doubt about their mental capacity and that the subsequent legal process of DoLS is followed as needed. The project group sought to address this issue using clinical informatics through the electronic health record and data reports to re-design the process. User involvement was key to ensure the process and key pieces of documentation were designed to be easy for staff to use with responsibilities clearly defined. The importance of operational staff having good visibility of the end-to-end process was key to allow staff to identify and address any gaps in the process in real time without the need for escalation by the safeguarding team. A robust data report further supports the safeguarding team to effectively manage this group of vulnerable patients. The project has significantly increased appropriately the number of MCA assessments undertaken and subsequent DoLS applications submitted to local authority partners.

Important legal principles of consent and mental capacity.

Consent is an essential part of healthcare practice, allowing patients to make autonomous decisions. However, this changes when a patient has mental incapacity or is unable to make decisions for themselves for a duration of time. This month's Policy column looks at some of the key principles of the Mental Capacity Act 2005, and how this can be applied in community nursing practice.

Mental capacity assessment in the multi-professional real world: a qualitative study of six areas of uncertainty.

Background: The Mental Capacity Act 2005 of England and Wales is a ground-breaking piece of legislation with reach into healthcare, social care and legal settings. Professionals have needed to develop skills to assess mental capacity and handle malign influence, but it is unclear how assessments are implemented in real world settings. Our previously reported survey found professionals juggling competing resources in complex systems, often struggling to stay up to date with law.The current follow-up study uses one-to-one interviews of professionals to characterise in detail six areas of uncertainty faced when assessing mental capacity, whilst suggesting ways to make improvements. Methods: Forty-four healthcare, social care and legal professionals were interviewed, using a semi-structured topic guide. Transcripts were analysed using framework analysis: a qualitative technique built to investigate healthcare policy. Results: Our topic guide generated 21 themes. In relation to the six areas of uncertainty: 1) Many participants stressed the importance of capturing a holistic view, adding that their own profession was best-placed for this - although a medical diagnosis was often needed. 2) The presumption of capacity was a laudable aim, though not always easy to operationalise and occasionally being open to abuse. 3) There was cautious interest in psychometric testing, providing a cognitive context for decisions. 4) Undue influence was infrequent, but remained under-emphasised in training. 5) Multi-professional assessments were common, despite doubts about fitting these within local resources and the law. 6) Remote assessment was generally acceptable, if inadequate for identifying coercion. Conclusions: Practical constraints and competing demands were reported by professionals working within real world systems. Assessment processes must be versatile, equally applicable in routine and emergency settings, across diverse decisional types, for both generalist and specialist assessors, and able to handle coercion. Recognising these challenges will guide development of best practices in assessment and associated policy.

The Mental Capacity Act 2005 of England and Wales is an important piece of law for professionals working in health and social care or as lawyers. It explains how to assess whether a person is able to take a particular decision for themselves ­ and therefore has "mental capacity" in the eyes of society. Professionals have needed to develop skills to assess mental capacity, and to recognise situations where family or friends are trying to influence decisions for their own interests. We previously reported a large scale survey of professionals who assess mental capacity. The current study uses one-to-one interviews, exploring in detail six areas of uncertainty around capacity assessment which were described in that survey. We interviewed 44 health and social care professionals and lawyers, then analysed their responses. We found 21 themes relating to the six areas of uncertainty: 1) The importance of capturing a holistic view of the person's life; 2) Challenges for assessors when trying to presume initially that a person does have mental capacity, as the law asks assessors to do; 3) Detailed testing by psychologists could be useful; 4) Other people were rarely thought to try to influence decisions, but awareness of this possibility should be emphasised in training; 5) Multi-professional assessments were common, despite doubts about whether these were possible in all settings or fit with the law; 6) Remote assessment was generally acceptable, but was poor at identifying if people were being influenced. Practical constraints and competing demands were reported by professionals working within real world systems. Our analysis suggests that mental capacity assessment processes need to be versatile, so they can work well in routine and emergency settings and for a range of types of decisions. Recognising these challenges will guide development of best practices in assessment and associated policy.

Mediating disputes under the Mental Capacity Act 2005: relationships, participation, and best interests.

This article analyses the use of mediation to resolve mental capacity law disputes, including those that arise in the healthcare context. It draws on original empirical data, including interviews with lawyers and mediators, and analysis of a mediation scheme, to argue that mediation has the potential to be an effective method of resolution in mental capacity law. It highlights the relationship benefits of mediation while acknowledging the challenges of securing P's participation and best interests. The final section of the article considers how mediation can operate in one of the most challenging healthcare environments, the Intensive Care Unit. The article emphasizes that the challenges we see in mediation are not unique and exist across the spectrum of Court of Protection practice. Therefore, the article concludes that mediation may be used effectively but the jurisdiction would also benefit from a clearer regulatory framework in which it can operate.

Deprivation of liberty and the community nurse.

In this month's Policy column, Iwan Dowie discusses the 'deprivation of liberty' - which is used to safeguard patients who may be lacking sufficient mental capacity to manage their own safety. The author, through previous legal cases, shares how the Deprivation of Liberty Safeguards (DoLS)-an amendment to the Mental Capacity Act 2005-came into being, and the importance of community nurses in knowing the DoLS.

Enhancing recruitment of individuals living with frailty, multimorbidity and cognitive impairment to Parkinson's research: experiences from the PRIME-UK cross-sectional study.

BACKGROUND AND OBJECTIVES: People with parkinsonism who are older, living in a care home, with frailty, multimorbidity or impaired capacity to consent are under-represented in research, limiting its generalisability. We aimed to evaluate more inclusive recruitment strategies. METHODS: From one UK centre, we invited people with parkinsonism to participate in a cross-sectional study. Postal invitations were followed by telephone reminders and additional support to facilitate participation. Personal consultees provided information on the views regarding research participation of adults with impaired capacity. These approaches were evaluated: (i) using external data from the Parkinson's Real World Impact assesSMent (PRISM) study and Clinical Practice Research Datalink (CPRD), a sample of all cases in UK primary care, and (ii) comparing those recruited with or without intensive engagement. RESULTS: We approached 1,032 eligible patients, of whom 542 (53%) consented and 477 (46%) returned questionnaires. The gender ratio in PRIME-UK (65% male) closely matched CPRD (61% male), unlike in the PRISM sample (46%). Mean age of PRIME participants was 75.9 (SD 8.5) years, compared to 75.3 (9.5) and 65.4 (8.9) years for CPRD and PRISM, respectively. More intensive engagement enhanced recruitment of women (13.3%; 95% CI 3.8, 22.9%; P = 0.005), care home residents (6.2%; 1.1, 11.2%; P = 0.004), patients diagnosed with atypical parkinsonism (13.7%; 5.4, 19.9%; P < 0.001), and those with a higher frailty score (mean score 0.2, 0.1, 0.2; P < 0.001). CONCLUSIONS: These recruitment strategies resulted in a less biased and more representative sample, with greater inclusion of older people with more complex parkinsonism.

Incorporating advance care planning in dementia care.

Recent policy focus in dementia care has been on living well with the condition; however, being able to die well with dementia is of equal importance. Advance care planning (ACP) enables people to consider, express and record their wishes and preferences for palliative and end of life care, however there is a low uptake of ACP in people with dementia. Although ACP discussions should be initiated as soon as possible after a diagnosis of dementia, there are other opportunities and transition points in the person's care during which health and social care professionals could promote, engage in and support ACP discussions. This article considers the importance of ACP in dementia care and uses a case study to explore opportunities for initiating and engaging in ACP with people with dementia.

Diverging medical and legal perceptions of the need for legal guardianship in people with dementia: A qualitative study.

BACKGROUND: Dementia is assumed to alter mental capacity, which may necessitate legal guardianship. However, only limited research exists on how dementia affects mental capacity, and most studies have focused solely on a medical perspective and concentrate on memory functions. The aim of this qualitative study was to investigate physicians' and legal experts' perceptions on a broad range of cognitive and neuropsychiatric domains potentially affecting mental capacity and the need for guardianship in people with dementia. METHODS: Physicians (N = 30) and legal experts (N = 20) participated in semi-structured individual interviews. The data were analyzed by using content analysis and further semi-quantified according to the cognitive and neuropsychiatric domains. RESULTS: Physicians considered neuropsychiatric symptoms and executive dysfunction to be the most important deficits in the legal context, while legal experts highlighted episodic memory impairment and dyscalculia. Perceptions regarding the importance of several cognitive and neuropsychiatric symptoms varied between and within the professional groups. CONCLUSIONS: Physicians and legal experts diverged in their perceptions of cognitive and neuropsychiatric domains affecting mental capacity and the need for guardianship. The evaluation and influence of medical evidence among legal experts heavily rely on subjective opinions. Given the substantial potential impact on patients' equal access to their rights, developing standardized guidelines is essential.

The CRPD and mental health law reform in Scotland.

Scotland's mental health and capacity legislation and its implementation is underpinned by European Convention on Human Rights (ECHR) informed principles, and such legislation and its implementation has remained largely ECHR compliant. It is designed to protect individuals' autonomy from inappropriate and disproportionate nonconsensual intrusions but its scope is largely limited to this. However, since the legislation was enacted at the start of the twenty first century the UK subsequently ratified the UN Convention on the Rights of Persons with Disabilities (CRPD) which requires the law and related practice to focus on giving effect to all the rights of persons with mental disabilities (people living with psychosocial, cognitive and intellectual disabilities) on an equal basis with others and to actively support such equality in rights enjoyment. The Terms of Reference of the independent Scottish Mental Health Law Review (2019-2022) included considering and making recommendations to align Scotland's mental health and capacity legislation with the CRPD. After engaging widely with stakeholders its recommendations sought to strengthen the voice of persons who use services and of those who care for them, reduce the need for non-consensual measures and secure rights to the help and support necessary to live a good life. In order to achieve this, it recommended, amongst other things, a refocusing on mental health and capacity law together with a Human Rights Enablement, Supported Decision Making and Autonomous Decision Making framework.

Reliability of clinical judgment for evaluation of informed consent in mental health settings and the validation of the Evaluation of Informed Consent to Treatment (EICT) scale.

Introduction: The competence assessment to give informed consent in the legal and healthcare settings is often performed merely through clinical judgment. Given the acknowledged limited reliability of clinician-based evaluation in the mental health sector, particularly for the assessment of competence to consent, our objective was to ascertain the dependability of clinical judgment when evaluating the ability of schizophrenia patients to make choices about their health. Methods: The potential convergence between clinical evaluation and scores from a new standardized assessment (the "Evaluation of Informed Consent to Treatment" - "EICT" scale) was therefore tested. The scale assesses four dimensions of competence, specifically how patients normally understand information relating to care (Understanding); how they evaluate the choice of treatment in terms of risk/benefit ratio (Evaluating); how they reason coherently in the decision-making process (Reasoning); and, finally, their ability to make a choice between treatment alternatives (Expressing a choice). Thirty-four outpatients with schizophrenia were evaluated for their competence to consent by five referring clinicians with different backgrounds (psychiatrist, forensic psychiatrist, geriatrician, anesthetist, and medico-legal doctor). Inter-raters variability was tested through correlation analyses between the scores obtained by the clinicians on a modified version of the Global Assessment of Functioning scale (GAF) designed specifically to subjectively assess functioning in each of the four competence dimensions. Two validated competence scales (Mac-CAT-T, SICIATRI-R), and a neuropsychological battery were also administered along with scales for evaluating neuropsychiatric symptoms severity and side effects of medication. Results: Clinical judgments of the individual specialists showed great inter-rater variability. Likewise, only weak/non-significant correlations were found between the EICT subscales and the respective clinicians-rated GAF scales. Conversely, solid correlations were found between the EICT and MacCAT-T subscales. As expected, healthy controls performed better in the ability to give informed consent to treatment, as measured by the three scales (i.e., EICT, MacCAT-T, and SICIATRI-R), and neuropsychological test performance. In the comparisons between patients who, according to the administered EICT, were able or not able to give informed consent to treatment, significant differences emerged for the Phonemic verbal fluency task (p = 0.038), Verbal judgments (p = 0.048), MacCAT-T subscales, and SICIATRI-R total score. Moreover, EICT exhibited excellent internal consistency (Cronbach's alphas ranging from 0.96 to 0.98 for the four subscales) while the Item Analysis, by measuring the correlation between each item of the EICT and the total score, was excellent for all items of all subscales (alphas ranging from 0.86 to 0.98). Discussion: In conclusion, our findings highlighted that the assessment of competence exclusively through clinical judgment is not fully reliable and needs the support of standardized tools. The EICT scale could therefore be useful in assessing general competence to consent both in healthcare and legal contexts, where it might be necessary to evaluate the effective competence of patients with psychiatric disorders. Finally, this scale could serve as a valuable tool for decisions regarding whether and to what extent a patient needs support.

Adult safeguarding legislation: Navigating the borderlands between mental capacity, mental health and social care law and practice.

Adult safeguarding legislation is contentious because it seeks to protect 'vulnerable' adults who fall between the borderlands of social care, mental health and mental capacity law. As a new and complex area of law and practice, further research on adult safeguarding legislation is required, in particular to consider it efficacy and human rights implications. Utilising a narrative literature review approach this article explores current research evidence on the Adult Support and Protection (Scotland) Act 2007 to consider whether safeguarding powers and duties can achieve a proportionate balance between individual autonomy and the state's duties to protect adults at risk of harm and, if so, how. The findings demonstrate there is a wide range of people who can fall into these borderland areas. For a majority, the use of the Act has made significant positive differences to their lives. However, while supported decision-making was identified it was not found to be consistently applied. In addition, concerns emerged around the adequacy of some professionals' legal knowledge, the consistent upholding of adults' will and preferences, and the commitment to and resourcing of supported decision-making. Notwithstanding these drawbacks, it is concluded that this Act provides vital functions but amendments would enhance alignment with the CRPD.

Risk management and decision-making in dementia care.

What constitutes a risk for a person living with dementia may be perceived and prioritised differently by nurses from varying clinical backgrounds. Furthermore, risk may be perceived differently according to the context. This article outlines some of the social, psychological and physical risk factors relevant to people living with dementia across the life course of the condition. It is important that nurses understand their role in identifying, assessing and managing risk and are aware of the resources, policies, legislation and processes designed to support decision-making and minimise the risk of harm to people living with dementia, their families and carers. The authors hope that this article will support nurses to become more confident in identifying risk while encouraging them to adopt a proactive and person-centred approach to risk assessment and management.

Decision making capacity for treatment in psychiatric inpatients: a systematic review and meta-analysis.

Decision-making capacity (DMC) among psychiatric inpatients is a pivotal clinical concern. A review by Okai et al. (2007) suggested that most psychiatric inpatients have DMC for treatment, and its assessment is reliable. Nevertheless, the high heterogeneity and mixed results from other studies mean there is considerable uncertainty around this topic. This study aimed to update Okai's research by conducting a systematic review with meta-analysis to address heterogeneity. We performed a systematic search across four databases, yielding 5351 results. We extracted data from 20 eligible studies on adult psychiatric inpatients, covering DMC assessments from 2006 to May 2022. A meta-analysis was conducted on 11 papers, and a quality assessment was performed. The study protocol was registered on PROSPERO (ID: CRD42022330074). The proportion of patients with DMC for treatment varied widely based on treatment setting, the specific decision and assessment methods. Reliable capacity assessment was feasible. The Mini-Mental State Examination (MMSE), Global Assessment of Function (GAF), and Brief Psychiatric Rating Scale (BPRS) predicted clinical judgments of capacity. Schizophrenia and bipolar mania were linked to the highest incapacity rates, while depression and anxiety symptoms were associated with better capacity and insight. Unemployment was the only sociodemographic factor correlated with incapacity. Assessing mental capacity is replicable, with most psychiatric inpatients able to make treatment decisions. However, this capacity varies with admission stage, formal status (involuntary or voluntary), and information provided. The severity of psychopathology is linked to mental capacity, though detailed psychopathological data are limited.

(Un)blurred lines? Sex, disability, and the dynamic boundaries of mental capacity law.

In this article, we consider the approach to decisions regarding capacity and sexual relations in the Court of Protection in England and Wales, and the boundaries drawn through its application of the Mental Capacity Act 2005 (MCA). We discuss recent developments in the law following the UK Supreme Court case A Local Authority v JB [2021] UKSC 52, which recast how capacity in relation to sexual relations ought to be assessed. Noting that this case has been warmly received by some feminist theorists for the centrality it affords to mutual consent, we draw on critical approaches from feminist, Black feminist, and disability scholarship, to call attention to the legal techniques and judicial reasoning in this case and the ways in which this embeds problematic norms and reinforces the marginalisation of disabled people. We call attention to the impoverished notions of equality advanced in the case and the assumptions that this appears to rely upon which obscure the realities and histories of legal intervention in disabled people's lives. We further argue that the approach in sexual relations cases appears to use capacity determinations as a vehicle to supplement gaps left by the criminal law, blurring their distinct rationalities and enabling further opportunities for control. We suggest that important insights can be gained from bringing these critical perspectives into conversation, including unsettling assumptions contained in the judgment and in mental capacity scholarship more broadly, manoeuvring us out of the perceived intractability of legal reasoning in this context, and offering productive ways forward.