Promoting human rights in mental healthcare: beyond the 'Geneva impasse'.

The past decade has seen a significant growth in attention to the human rights of persons with disabilities, taken to include mental health conditions. Consequently, challenges to important areas of current psychiatric practice have emerged, with which the profession has, in general, shown limited engagement.

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in capacity assessment, restricted therapeutic flexibility, scarce resources, disappointment due to noncompliance, and outdated content.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

Involuntary Detention and Treatment: Are We Edging Toward a "Paradigm Shift"?

Recent challenges to conventional mental health laws concerning involuntary detention and treatment of persons with a mental disorder have led to proposals, or indeed an insistence, that fundamental reform is necessary. A key theme has been the need to eliminate unfair discrimination against people with a mental disorder because their human rights are not respected on an equal basis with other people. Some proposals depart radically from conventional assumptions concerning the justification of involuntary detention and treatment. One is a "fusion law," a generic law applying to all persons lacking the ability to make a treatment decision, whether resulting from a "mental" or "physical" illness. An authoritative interpretation of the UN Convention on the Rights of Persons with Disabilities (2006) goes so far as to maintain that involuntary interventions are a violation of the Convention.

"Capacity", "best interests", "will and preferences" and the UN Convention on the Rights of Persons with Disabilities.

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) is the most up-to-date international legal instrument concerning the rights of persons with disabilities. Such persons are taken to include those with serious mental disorders. According to an authoritative interpretation of a crucial Article (Article 12 - Equal recognition before the law) by the UN CRPD Committee, involuntary detention and treatment of people with mental health disabilities are prohibited under the Convention. Both conventional mental health law and "capacity-based" law are deemed to violate the Convention. However, some other UN bodies are not in full agreement (for example, the UN Human Rights Committee and the Subcommittee on Prevention of Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment), while others are less explicitly absolutist (for example, the Human Rights Council). Furthermore, strong criticisms of the position of the CRPD Committee have been mounted from a number of academic quarters. These criticisms center on whether the role of a person's ability to make a decision can be ignored, no matter the circumstances. Much of the above debate turns on the concept of "legal capacity" and the now often-repeated precept that one must always respect the "will and preferences" of the person with a disability. However, "will and preferences" remains undefined. In this paper, I offer an analysis of "will and preferences" that can clarify interventions that may be acceptable or non-acceptable under the terms of the UN Convention.

Night-time confinement is an unacceptable hospital practice.

SummaryNight-time confinement, currently imposed as a blanket restriction on all patients on wards in UK high secure hospitals, constitutes an arbitrary restriction of liberty, not being based on any therapeutic purpose for those so restricted, nor serving a need for the protection of others. Its imposition constitutes a form of 'degrading' treatment as well as an unjustified restriction of 'residual' liberty. Persons who are vulnerable, especially those who are involuntarily detained as in this case, are particularly at risk of suffering human rights abuses. A compelling case can be made, based on ethics, law and accepted practice standards, for ruling out night-time confinement as an acceptable measure.Declaration of interestNone.

The development and validation of the Brief Experience of Caregiving Inventory (BECI).

BACKGROUND: The social network supporting an individual with psychosis may be adversely affected by the experience of caregiving. The Experience of Caregiving Inventory (ECI) is 66 item self-report measure of the impact of caregiving for carers of people diagnosed with psychotic disorders. This study aimed to create a brief version of the ECI, and evaluate its reliability and validity (n = 626). METHODS: The validation process was conducted through a Multidimensional Item Response Theory (MIRT) approach, using a graded response model and a complementary network approach. RESULTS: This resulted in a 19 item, four factor inventory with a good model fit, displaying good reliability and validity. CONCLUSION: The BECI is a valid measure. The simplicity, ease of application and robust psychometric properties further enhances its acceptability and usefulness as a brief measure in clinical research and trials, as well as in routine practice providing reliable and valid data on experience of caregiving in families of an individual with psychosis.

Informed, advance refusals of treatment by people with severe mental illness in a randomised controlled trial of joint crisis plans: demand, content and correlates.

BACKGROUND: In the UK, crisis planning for mental health care should acknowledge the right to make an informed advance treatment refusal under the Mental Capacity Act 2005. Our aims were to estimate the demand for such treatment refusals within a sample of service users who had had a recent hospital admission for psychosis or bipolar disorder, and to examine the relationship between refusals, and service user characteristics. METHODS: To identify refusals we conducted content analysis of Joint Crisis Plans, which are plans formulated by service users and their clinical team with involvement from an external facilitator, and routine care plans in sub-samples from a multi-centre randomised controlled trial of Joint Crisis Plans (plus routine mental health care) versus routine care alone (CRIMSON) in England. Factors hypothesised to be associated with refusals were identified using the trial data collected through baseline interviews of service users and clinicians and collection of routine clinical data. RESULTS: Ninety-nine of 221 (45%) of the Joint Crisis Plans contained a treatment refusal compared to 10 of 424 (2.4%) baseline routine care plans. No Joint Crisis Plans recorded disagreement with refusals on the part of clinicians. Among those with completed Joint Crisis Plans, adjusted analyses indicated a significant association between treatment refusals and perceived coercion at baseline (odds ratio = 1.21, 95% CI 1.02-1.43), but not with baseline working alliance or a past history of involuntary admission. CONCLUSIONS: We demonstrated significant demand for written treatment refusals in line with the Mental Capacity Act 2005, which had not previously been elicited by the process of treatment planning. Future treatment/crisis plans should incorporate the opportunity for service users to record a treatment refusal during the drafting of such plans. TRIAL REGISTRATION: ISRCTN11501328 Registered 13th March 2008.

The UN Convention on the Rights of Persons with Disabilities: 'Rights, will and preferences' in relation to mental health disabilities.

The UN Convention on the Rights of Persons with Disabilities spells out in the most up-to-date and specific manner the rights of persons with disabilities. In doing so the Convention presents serious challenges to many conventional practices in respect of people with disabilities, especially those with mental health disabilities. According to a number of authorities, most notably the UN Committee on the Rights of Persons with Disabilities, 'substitute decision-making' is not consistent with the Convention. 'Respect for the rights, will and preferences' is to be regarded as the touchstone for compliance with the Convention. However 'will and preferences' is nowhere defined. This paper examines the meaning of these terms, and draws attention to instances where a contemporaneous 'preference' may be at variance with a person's 'will'. In such cases, it is argued, that 'substitute decision-making' - or giving effect to the person's 'will' - may be justified.

We should replace conventional mental health law with capacity-based law.

As general medicine moves away from 'paternalism' and places an increasing emphasis on patient choice and autonomy, George Szmukler and Brendan D. Kelly debate whether conventional mental health legislation should be replaced with a model that focuses on the person's decision-making capabilities.

Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

BACKGROUND: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages. AIMS: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them. METHOD: 143 patients and carers across the Clinical Research Network (CRN) responded to an online semi-structured questionnaire (developed using participatory methodology). Quantitative and qualitative data were analysed. RESULTS: A range of benefits were reported, including providing a life focus and an improved relationship with illness. Less positive experiences regarding time and money and lack of acknowledgement were also reported, along with suggestions for improvement. CONCLUSIONS: PPI confers many benefits on patients and carers which could increase PPI recruitment if made explicit. More involvement in study recruitment and dissemination would increase the effectiveness of PPI input. Involving a more varied socioeconomic demographic and at an earlier stage is vital. Financial support for lower earners and greater feedback following involvement should also be explored.

Barriers to shared decision making in mental health care: qualitative study of the Joint Crisis Plan for psychosis.

BACKGROUND: Despite increasing calls for shared decision making (SDM), the precise mechanisms for its attainment are unclear. Sharing decisions in mental health care may be especially complex. Fluctuations in service user capacity and significant power differences are particular barriers. OBJECTIVE AND DESIGN: We trialled a form of facilitated SDM that aimed to generate patients' treatment preferences in advance of a possible relapse. The 'Joint Crisis Plan' (JCP) intervention was trialled in four mental health trusts in England between 2008 and 2011. This qualitative study used grounded theory methods to analyse focus group and interview data to understand how stakeholders perceived the intervention and the barriers to SDM in the form of a JCP. RESULTS: Fifty service users with psychotic disorders and 45 clinicians participated in focus groups or interviews between February 2010 and November 2011. Results suggested four barriers to clinician engagement in the JCP: (i) ambivalence about care planning; (ii) perceptions that they were 'already doing SDM'; (iii) concerns regarding the clinical 'appropriateness of service users' choices'; and (iv) limited 'availability of service users' choices'. Service users reported barriers to SDM in routine practice, most of which were addressed by the JCP process. Barriers identified by clinicians led to their lack of constructive engagement in the process, undermining the service users' experience. CONCLUSIONS: Future work requires interventions targeted at the engagement of clinicians addressing their concerns about SDM. Particular strategies include organizational investment in implementation of service users' choices and directly training clinicians in SDM communication processes.

Stigma- and non-stigma-related treatment barriers to mental healthcare reported by service users and caregivers.

Delayed treatment seeking for people experiencing symptoms of mental illness is common despite available mental healthcare. Poor outcomes are associated with untreated mental illness and caregivers may eventually need to seek help on the service user's behalf. More attention has recently focused on the role of stigma in delayed treatment seeking. This study aimed to establish the frequency of stigma- and non-stigma-related treatment barriers reported by 202 service users and 80 caregivers; to compare treatment barriers reported by service users and caregivers; and to investigate demographic predictors of reporting stigma-related treatment barriers. The profile of treatment barriers differed between service users and caregivers. Service users were more likely to report stigma-related treatment barriers than caregivers across all stigma-related items. Service users who were female, had a diagnosis of schizophrenia or with GCSEs (UK qualifications usually obtained at age 16) were significantly more likely to report stigma-related treatment barriers. Caregivers who were female or of Black ethnicities were significantly more likely to report stigma-related treatment barriers. Multifaceted approaches are needed to reduce barriers to treatment seeking for both service users and caregivers, with anti-stigma interventions being of particular importance for the former group.

Improving Therapeutic Relationships: Joint Crisis Planning for Individuals With Psychotic Disorders.

Outcomes for individuals with psychosis remain far from acceptable. Recently, prominent psychiatrists have called for an improved understanding of the impact of social contexts, and how social contexts might influence the development and maintenance of mental health problems. A key social context for individuals with psychosis is the therapeutic relationship. As part of a trial of joint crisis planning in England, this qualitative study aimed to determine the mechanism through which joint crisis planning might affect the therapeutic relationship. Results suggest that routine processes in mental health care are affected by policy and organizational requirements for risk mitigation-aspects that undermine person-centered approaches. In contrast, strong therapeutic relationships are characterized by individualized care and reliable and respectful treatment. The Joint Crisis Plan intervention partially succeeded in reducing contextual influences on routine role enactments, facilitating the demonstration of respect and improving the therapeutic relationship.

Can the therapeutic relationship predict 18 month outcomes for individuals with psychosis?

Therapeutic relationships (TRs) are considered a key component of good psychiatric care, yet its association with outcomes for individuals with psychosis remains unclear. Five hundred and sixty-nine service users with psychotic disorders and care coordinators in community settings rated their therapeutic relationship; outcomes were assessed 18 months later. In multivariate analyses, a small but significant association was found between service user ratings and instances of psychiatric hospital admissions, self harm and suicide attempts over an 18 month period. Care coordinator ratings were associated with instances of psychiatric hospital admissions and harm to others over the 18 months and level of functioning at 18 months. The differential findings and small effect size suggests that the therapeutic relationship needs further definition for this patient group in this setting. Nevertheless, clinicians should prioritise interactions that strengthen therapeutic relationships.