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

Advance Statements/Advance Choice Documents (AS/ACDs) are a type of document that aim to give service users (people that use mental health services) more influence in their decisions over their future care when they are in mental health services [1]. Early formations of ACDs/AS arose in Szasz’s (1982) [2] proposition of a psychiatric will where service users who are involuntarily detained, when well, could document their opposition to receiving coercive treatment if they are to become mentally unwell again or lose capacity [2]. This over time has developed into informal crisis plans or ‘joint crisis plans’ in mental health care, wherein planning for prevention of a mental health crisis can aid in recognising early signs of mental health crises and how to manage them [3‐6].

In countries with legislation for advance statements specific to mental healthcare (e.g., USA and Scotland), uptake has been slow and remains low [7]. In England and Wales, the Mental Capacity Act 2005 (MCA) supports the making of ACDs/AS through detailing preferences and wishes for care and advance decisions to refuse treatment (ADRT), that detail determinants of whether a person has capacity to make decisions and the procedures that are entailed when the person lacks capacity [8]. A person lacking capacity refers to their ability to make decisions based on conditions that may affect the function of their brain or mind. When making advance decisions, a person’s consent is needed, and their consent is dictated by their mental capacity [9]. However, the Mental Health Act 1983 (MHA) and the MCA are separate pieces of legislation that address different aspects of the law. The MCA addresses advance decision making however, the MHA focuses on the risk of harm to a person or others and can therefore determine whether an individual receives compulsory treatment. The MHA can override the MCA and therefore, ADRTs and any other ACD/AS can be overridden by the MHA if deemed necessary [9]. Further, there is little evidence that service users have the opportunity to use the advance planning provisions under the MCA [8].

Research in the USA, Scotland and England suggests there to be barriers at service user, clinician and service levels. Completing an ACD/AS involves asserting advance wishes and refusals for preferences for treatment and other aspects of care when one has the capacity to do so [1]. Research in the US and UK shows that the majority of service users need support to do this [8‐11]. In Morriss et al.’s (2020) [8] survey of people with bipolar disorder in England, among the third who were aware of the MCA, unrealistic expectations about advance planning and misunderstanding about the different forms (advance treatment refusals, advance statements and power of attorney) were common. Among the 10% who had made an advance refusal, only half were written down, of these, many were not given to anyone else and almost all were reportedly ignored during MHA detention (if detained under the MHA, advance refusals can be overridden if deemed necessary by clinicians, and treatment for mental disorders can be given to a service user without their consent). Scottish evidence suggests some service users are sceptical about whether ACDs/AS will be followed by staff, while others do not acknowledge their relevance [12].

Mental health professionals express reservations about being able to access ACDs/AS and honour the person’s wishes [7, 13, 14]. In the CRIMSON trial of Joint Crisis Plans [3] (JCPs, a type of advance statement), researchers identified three barriers: (1) lack of recognition of the benefits of advance statements; (2) not recognising the need for a change in the clinician-patient relationship including discussing treatment options and supporting patient choice; and (3) difficulties in implementation when working across the healthcare system [3]. Moreover, while some clinicians believed the external JCP facilitator was necessary for empowering service users to participate in shared decision making, others feared interference [15]. However, better quality training on the Mental Capacity Act (MCA) in the UK correlates with greater willingness to discuss Advance Decisions to Refuse Treatment amongst people that have bipolar disorder [16].

Service users, clinicians and carers view ACDs/AS as potentially offering positive outcomes including: reduced coercion or trauma associated with compulsory treatment; building therapeutic alliance [5, 11]; earlier presentation; avoiding harm; enhancing communication; empowering service users and improving clinician confidence [15, 17‐19]. Legislation for ACDs/AS is therefore likely to create an implementation gap, and there remains a need for an evidence-based approach to ensure effective implementation.

Detention rates of Black people, defined as people of Black African and Caribbean heritage including those of mixed ethnicity, are disproportionately (> 3 times) higher than those of White British people and they have poorer care experiences and outcomes [20, 21]. Black people are more likely to access mental healthcare via the criminal justice system than through primary care [22] or have police involved in their detention [23], with their treatment involving increased use of compulsion, longer admissions and more detention in secure settings [24]. Black people of Caribbean heritage are more likely to be re-admitted or repeatedly detained than White people [20] and are less likely to be referred for specialist mental healthcare [25]. This pattern incurs increased service costs [26] – the current unit cost/day for caring for someone with a psychotic relapse in the community is £146, compared with £455 in hospital. Detaining Black people has been estimated conservatively to cost ~ £158 million/year (Department of Health & Social Care, 2018) [26].

Almost half (47%) of the explanations for variations in care have no or limited supporting evidence [4]. Interventions based on these explanations are likely to fail [4], and current methods of supporting Black people previously detained under the MHA are insufficient (Department of Health & Social Care, 2018) [26]. In contrast, ACDs/AS are the only evidence-based intervention to reduce compulsory psychiatric admission overall, with particular benefit for Black people [27, 28]. They thus represent a way to reduce unwarranted variation by intervening in a negative cycle of dissatisfaction with services [29], impaired therapeutic alliance and trust, disengagement from services, reduced help seeking [25, 26] and repeated compulsory admissions, associated with reduced quality of life.

Black people with severe mental illness (SMI) benefit more than other groups from ACDs/AS. The CRIMSON trial showed greater cost-effectiveness of JCPs for Black people compared with White and Asian participants [5], arising from reduced inpatient service use. In a US study [11], completing an ACD/AS was a more empowering experience for African Americans compared with other ethnic groups [30] and demand for these was higher among non-White people [11]. In England, stakeholders found ACDs/AS to be important for Black people, however they may face more barriers in creating them, this includes a lack of trust in mental health services may create a high demand for ACDs/AS among Black people in England [10, 20, 31, 32].

For there to be an improvement in relationships between staff and Black people in mental health services and for Black people to benefit from ACDs/AS, they must be implemented effectively using processes that are informed by: research on the barriers to implementation of ACDs/AS and research focused on and co-produced with Black people and their carers/supporters and mental health professionals.

The aim of this study is to co-produce and test an advance statement’s implementation resource for Black people previously detained under the MHA, which can be applied to implement advance statements for all people with SMI in all primary and secondary care mental health services. Specific objectives are as follows, to:

The study comprises three phases: 1) formative work through stakeholder workshops; 2) co-production of resources and implementation strategies through a Delphi consensus development exercise and working groups; and 3) testing of the resources and implementation strategies using quality improvement (QI) methods.

The study sites will be based in four local government areas in South London served by the same National Health Service (NHS) mental health service provider. These sites were selected to build on established ACD/AS resources and because their total populations serve large numbers of Black people (Lambeth 24%, Lewisham 26.8%, Southwark 25.1%, Croydon 22.6% [33].