Content

The most common wishes recorded in advance statements refer to medication preferences and refusals of some medication. Refusal of all psychotropic medication is rarely recorded (Srebnik Reference Srebnik, Rutherford and Peto2005), for example only 1 patient with psychotic disorder out of 221 stated in their joint crisis plan that they would prefer not to take any medication (Farrelly Reference Farrelly, Brown and Rose2014a) and in 2 out of 55 advance statements presented to the Mental Health Tribunal for Scotland all medications were refused (Reilly Reference Reilly and Atkinson2010).

More recent research on the prevalence of treatment refusals includes a study on crisis treatment preferences of people with personality disorder (Borschmann Reference Borschmann, Trevillion and Henderson2014) that identified a theme regarding treatment refusals involving particular types of psychotropic medication and involuntary treatment, and a study on joint crisis planning that showed a significant increase in the number of treatment refusals – from 2.4% in baseline routine care plans to 45% following joint crisis planning (Henderson Reference Henderson, Farrelly and Flach2017). This raises an important question as to whether mental health professionals should routinely ask patients whether there are any treatments they wish to refuse.

Other aspects of healthcare planning are very important and these include methods of de-escalating a crisis (most often privacy or being offered time out), the appointment of a surrogate decision maker, wishes about whom to notify (and whom not to) about admission, assistive devices (e.g. corrective lenses, dentures), dietary preferences, and organising care of dependants and pets while in hospital (Srebnik Reference Srebnik, Rutherford and Peto2005). It is particularly important to look at non-medication preferences, which can be easily overlooked in a crisis, as many aspects of advance statements can be respected even if a patient is detained and receiving treatment against their will, thus preserving some aspects of their autonomy (Jankovic Reference Jankovic, Richards and Priebe2010).

In terms of the content of advance statements, the summary (Box 1) from our 2010 article has been included here. In addition, a recent study on joint crisis plans (Farrelly Reference Farrelly, Brown and Rose2014a) used thematic analysis to identify two major categories of preferences: (a) the manner in which crisis care would be delivered and (b) treatment-specific interventions. Most participants requested full involvement in decisions about their care, clear and consistent treatment plans, access to familiar clinicians who knew them well, and to be treated with respect and compassion. Some requested hospital admission, but the majority preferred alternatives. The most frequently preferred intervention was care by a home treatment team. Just under half refused a particular treatment, and the majority of refusals concerned specific medications where alternatives were offered.

Implementation

The implementation of advance statements in routine mental healthcare – both their completion by patients and access and honouring by staff – continues to encounter difficulties.

Patients’ completion of advance statements without active help was low a decade ago, and this continues to be the case. A US study from 2006 indicated that the rate of completion of psychiatric advance directives in a control group that did not receive active facilitation was only 3% (Swanson Reference Swanson, Swartz and Elbogen2006). In a more recent multi-site study in England, a review of routine crisis planning at baseline before any intervention showed that only 15% of participants had a crisis plan containing any information specific to that individual (Farrelly Reference Farrelly, Szmukler and Henderson2014b). One study (Henderson Reference Henderson, Jackson and Slade2010) that looked at psychiatric advance directives within the US Veterans Health Administration showed preferences for non-medical settings for completion and assistance with completion independent of the treatment team.

Several studies have shown that, with intense facilitation, completion rates can be improved both for psychiatric advance directives – to 50% (Easter Reference Easter, Swanson and Robertson2017) and 61% (Swanson Reference Swanson, Swartz and Elbogen2006) – and for crisis plans – to 64% (Ruchlewska Reference Ruchlewska, Kamperman and Wierdsma2016). The form of facilitation varied and included external facilitation of joint crisis planning with clinicians (Thornicroft Reference Thornicroft, Farrelly and Szmukler2013), using a manualised intervention combining motivational interviewing with advance directives (Kisely Reference Kisely, Wyder and Dietrich2017), and patient-advocate and clinician facilitated crisis planning (Ruchlewska Reference Ruchlewska, Wierdsma and Kamperman2014). However, a large number of eligible patients did not take part in these studies – 60% in Ruchlewska et al (Reference Ruchlewska, Wierdsma and Kamperman2014) and 64% in Henderson et al (Reference Henderson, Flood and Leese2004). Some refused to participate whereas others were not contactable. Such a high percentage of non-participation raises the question of generalisability of these results to routine care.

Despite evidence that facilitation increases completion rates, a question remains as to how this can be maintained in routine practice without extra financial investment. Furthermore, significant problems remain with accessing and adhering to advance statements at times of crisis. Although much is known about the completion process and the content of advance statements, very little is known about accessing and honouring them (Nicaise Reference Nicaise, Lorant and Dubois2013). A recent study in The Netherlands revealed that individual crisis plans were consulted for only 34% of patients in crisis and where this involved an involuntary admission, an even smaller proportion was accessed (Ruchlewska Reference Ruchlewska, Kamperman and Wierdsma2016). Similarly, in a recent multisite randomised controlled trial (RCT) in England, many patients complained that the agreements made in their joint crisis plan were not honoured in practice; only 5 of 28 care coordinators questioned reported referring to or using joint crisis plans during the follow-up period (Thornicroft Reference Thornicroft, Farrelly and Szmukler2013). It is unclear how much of the problem is related to organisational difficulties such as out-of-area in-patient admissions and functional models of care (a model where care in the community is provided by a different team than care in in-patient settings or in crisis) or how much is related to a culture in mental health services of not considering advance choices an essential part of crisis care. Qualitative exploration of joint crisis plans shows that, although clinicians endorsed shared decision-making approaches and believed that they were enacting them in routine care, reports from patients contradicted this view (Farrelly Reference Farrelly, Lester and Rose2015).

Effectiveness

Looking at the effectiveness of advance planning, results of three trials have been published in the past decade. In the Dutch system, where there are emergency involuntary admissions and court-ordered involuntary admissions and where, for court-ordered involuntary admissions, dangerousness criteria mostly include self-neglect or social breakdown, Ruchlewksa et al (Reference Ruchlewska, Wierdsma and Kamperman2014) showed that crisis planning may be an effective intervention for reducing planned court-ordered admissions of people with psychotic and bipolar disorders but not emergency admissions. Thornicroft et al (Reference Thornicroft, Farrelly and Szmukler2013) published results of a large multi-centre RCT in England, CRIMSON, that failed to demonstrate that joint crisis planning is significantly more effective than treatment as usual in reducing compulsory admissions for people with psychosis. However, there was evidence that crisis plans had not been fully implemented at all study sites. The same study identified an improvement in the therapeutic relationship of the intervention group. Borschmann et al (Reference Borschmann, Barrett and Hellier2013) showed that joint crisis planning had high face validity in a sample of people with borderline personality disorder in London (UK), but there was no evidence of clinical efficacy in this feasibility study (the primary outcome was self-harming behaviour).

Although single studies have yielded inconsistent results, a meta-analysis (de Jong Reference de Jong, Kamperman and Oorschot2016) of studies that examined effects of advance statements on compulsory admissions of adult psychiatric patients showed a statistically significant reduction (23%) in such admissions. The authors concluded that this is a clinically relevant figure because of the effect that compulsory admissions have on psychiatric patients and the human rights issues involved. Results highlight the fact that, by advocating patients' desires and preferences regarding a future crisis and by involving family and friends, advance treatment planning is an important and helpful process.

There is evidence pointing towards the importance of these interventions for specific groups of patients. A US study by Elbogen et al (Reference Elbogen, Swanson and Swarts2007) showed that an increased sense of autonomy at 1 year following completion of psychiatric advance directives was predicted by ethnicity. The paper concluded that psychiatric advance directives hold promise in helping empower African American people with mental illness. Furthermore, economic evaluation of the CRIMSON trial showed a 90% probability of joint crisis plan intervention being more cost-effective than treatment as usual in the Black ethnic group (Barrett Reference Barrett, Waheed and Farrelly2013). This outcome is potentially of great importance given that the rate of detention in England for the ‘Black or Black British’ group has been found to be over four times that for the ‘White’ group (Community and Mental Health Team, NHS Digital 2017). Thus, any interventions that may reduce compulsory intervention in this group deserve particular attention and consideration for clinical practice.

The law in England and Wales and the Independent Review of the Mental Health Act

In England and Wales, the Code of Practice for the Mental Capacity Act 2005 (Department for Constitutional Affairs 2007) defines an advance decision to refuse medical treatment as legally binding if it is made at a time when a person has mental capacity to make such a decision and the decision is applicable to the given situation. For refusal of life-sustaining treatment, an advance decision has to be in writing, signed and witnessed, and a clear statement must be included stating that it is applicable even if life is at risk. The Code of Practice states that ‘People can only make advance decisions to refuse treatment. Nobody has the legal right to demand specific treatment, either at the time or in advance’ (Department for Constitutional Affairs 2007: para. 9.5). Therefore, unlike treatment refusals, advance statements regarding treatment preferences are not legally binding. Nevertheless, they should be taken into consideration when deciding on the treatment options that are in the best interests of the patient if that patient lacks capacity.

Regarding involuntary treatment, the Mental Capacity Act Code of Practice states that, under the Mental Health Act 1983, healthcare staff can treat patients for their mental disorder, even if they have made an advance decision to refuse such treatment. An exception to this is electroconvulsive therapy (ECT). A person who has made a valid and applicable advance decision under the Mental Capacity Act to refuse ECT, or for whom a decision has been taken by their health and welfare attorney to refuse ECT, cannot be given that treatment. However, a significant clarification has been made on this point in the most recent edition of Code of Practice for the Mental Health Act, which states that an advance decision to refuse ECT can be overridden under the Mental Health Act in an emergency where it is necessary to save life or prevent serious deterioration: ‘A person who has made a valid and applicable advance decision under the [Mental Capacity Act 2005], or for whom a decision has been taken by their attorney, to refuse ECT, cannot be given that treatment under section 58A of the Act although treatment can be given in specific emergency situations under section 62(1A)’ (Department of Health 2015: para. 13.3). This issue of overriding valid and applicable refusal of ECT has been raised as contentious and discussed during the recent Independent Review of the Mental Health Act (Mental Health Act Independent Review Team 2018).

Significant changes are likely to happen in the near future, as the report from the Mental Health Act Independent Review Team makes very important recommendations for the enhancement of the statutory framework for advance care planning in mental health services. The report states that ‘The concepts in the Mental Capacity Act of advance decision-making and welfare powers of attorney should also apply in the context of the Mental Health Act’ (Mental Health Act Independent Review Team 2018: p. 21).

It also makes a number of recommendations (under Principle 1) about choice and autonomy in making decisions about care and treatment (Box 2). It recommends that statutory ‘advance choice documents’ (ACDs) should be created in which patients are encouraged to voice their views about any future in-patient care and treatment. It is hoped that, where a person is recorded as having capacity at the time the choice is made, the presumption will be that the choice will be honoured unless there are compelling reasons not to honour it. Linked to this is the recommendation that it should be harder for treatment refusals to be overridden (for example that an advance refusal of ECT can be overridden by a judge or Court of Protection on strict criteria involving immediate risk to life). Other recommendations emphasise the importance of respecting patient choice and the right of patients to request a review by a second opinion appointed doctors (SOAD).

In addition, recommendations are made in the advocacy section of Principle 1 that the statutory right to an independent mental health advocate (IMHA) should be extended to include all mental health in-patients, including informal patients and people preparing their advance choice documents that refer to detention under the Mental Health Act (Mental Health Act Independent Review Team 2018: p. 23).

In an initial response to the review report by the government (under the then Prime Minister Theresa May) committed to introducing a new Mental Health Bill and accepted recommendations (a) that those detained under the Mental Health Act will be allowed to nominate a person of their choice to be involved in decisions about their care and (b) to introduce statutory advance choice documents so that people will also be able to express their preferences for care and treatment (Department of Health and Social Care 2018).