Terminology

Three frequently used terms describe planning for future mental healthcare: advance statements, advance directives and advance decisions. It is important to differentiate between them to avoid confusion.

An advance statement is a broad term used to describe a range of wishes for future treatment, including treatment preferences and refusals, preferences on important aspects of personal and home life, and the appointment of a surrogate decision maker. This expression is now commonly used in the UK (Reference Henderson, Swanson and SzmuklerHenderson 2008).

The term advance directive has been used in two different ways in the UK. Previously, it described specific treatment refusals (Reference Williams and RigbyWilliams 2004), but this has now been replaced in the Mental Capacity Act 2005 with ‘advance decision to refuse treatment’. In recent years, ‘advance directive’ has been used more broadly – National Institute for Health and Clinical Excellence (NICE) guidelines on schizophrenia (National Collaborating Centre for Mental Health 2003) and disturbed/violent behaviour (National Institute for Health and Clinical Excellence 2005) use ‘advance directive’ to describe ‘treatment choices’ and ‘preferred strategies in the event of violent incident’ respectively.

In this article we use the term advance statement for a general description of wishes for future mental health treatment, and the term advance decision to refuse treatment for a specific subgroup of advance statements regarding treatment refusal.

Current mental health law and guidance in England and Wales

The mental health treatment of service users who lack mental capacity is guided by the Mental Capacity Act 2005 and, if they are detained, also by the Mental Health Act 1983. NICE guidance on schizophrenia and disturbed/violent behaviour (National Collaborating Centre for Mental Health 2003; National Institute for Health and Clinical Excellence 2005) sets standards on how to incorporate advance statements into standard mental healthcare.

How to make an advance statement

Advance statements can be given in either written or oral form (with the exception of an advance decision to refuse life-sustaining treatment, which has to be written, signed and witnessed in order to be valid). Written statements are generally a more accurate reflection of the service user's views and should be kept in their medical records as these are easier to access at the time of crisis. Service users can complete an advance statement on their own, informally with help from friends, family or an advocate, or formally with help from an independent mental health professional or a member of their own mental health team. An advance statement can be made at any time, provided that the service user has mental capacity to make the decisions it contains. Usually advance statements are created after an in-patient admission or as part of an ongoing treatment plan in the community. If advance statements include decisions about treatment refusal, the decision-making capacity at the time of completion should be documented. This will avoid possible uncertainty that may arise at a later date from retrospective attempts to decide whether a service user had mental capacity at a time when the advance statement was completed.

Several interventions have been shown to be effective in helping service users complete an advance statement. These include semi-structured interviews and guided discussions on choices (Reference Swanson, Swartz and ElbogenSwanson 2006), computer software with a list of pre-established choices that guides a service user through the process (Reference Srebnik, Rutherford and PetoSrebnik 2005), or using a hypothetical psychiatric scenario to elicit treatment preferences (Reference Van Citters, Naidoo and FotiVan Citters 2007).

Content of advance statements

The most common wishes recorded in advance statements refer to medication preferences and refusals, with antidepressants and second-generation antipsychotic medication being most frequently preferred, and first-generation antipsychotic medication most commonly refused mainly because of side-effects (Reference Srebnik, Rutherford and PetoSrebnik 2005) (Box 2). Refusal of all psychotropic medication is very rarely recorded in advance statements (Reference Amering, Stastny and HopperAmering 2005a; Reference Srebnik, Rutherford and PetoSrebnik 2005).

In addition to preferences and refusals of medication, other aspects of healthcare planning are very important for service users. These include methods of de-escalating a crisis (most often privacy or being offered time out), the appointment of a surrogate decision maker, wishes on whom to notify (and whom not to) about admission, assisted devices (e.g. corrective lenses, dentures), dietary preferences, and organising care of dependants and pets while in hospital (Reference Srebnik, Rutherford and PetoSrebnik 2005). It is particularly important to look at non-medication preferences, which can be easily overlooked in a crisis. Many aspects of advance statements can be respected even if a service user is detained and receiving treatment against their will, thus preserving some aspects of their autonomy.

Studies of the content of advance statements completed by service users rated them as highly consistent with standards of clinical practice (Reference Srebnik, Rutherford and PetoSrebnik 2005; Reference Swanson, Swartz and ElbogenSwanson 2006).

Advance statements as a process

Drawing up an advance statement starts with an interest in planning future healthcare, reviewing past experiences and mobilising resources. A number of factors can facilitate this process, such as the effect of admission to a psychiatric hospital on family members or a partner (Reference Amering, Stastny and HopperAmering 2005a), or a good therapeutic relationship with a mental health professional. Once drawn up, an advance statement needs to be regularly revised so that new experiences with treatment and any changes in the individual's personal life can be taken into account.

Clinicians' views

Clinicians' support of advance statements varies. In one study, the level of support varied from 29 to 89% and psychiatrists were much less supportive than other stakeholders (Reference Atkinson, Garner and GilmourAtkinson 2004). Clinicians with a better knowledge of the legal implications of advance statements had more positive attitudes towards the process (Elborgen 2006).

Can advance statements reduce coercion and improve the therapeutic relationship?

A randomised controlled trial (RCT) conducted in the UK by Reference Henderson, Flood and LeeseHenderson et al (2004) showed that advance statements in a form of a ‘joint crisis plan’ resulted in a significant reduction of compulsory admissions and a reduction in overall admissions, which was close to statistical significance. The study included service users who had been admitted to a psychiatric hospital in the previous 2 years (either voluntarily or under the Mental Health Act) with an operational diagnosis of psychotic illness or non-psychotic bipolar disorder. Joint crisis planning involved the service user, their psychiatrist and care coordinator and a project worker negotiating a plan together.

Another UK RCT (Reference Papageorgiou, King and JanmohamedPapageorgiou 2002) showed no significant difference in compulsory admissions between an intervention and a control group. However, this study differed from that of Reference Henderson, Flood and LeeseHenderson et al (2004), mainly in that it included only in-patients receiving compulsory treatment under Sections 2, 3 or 4 of the Mental Health Act who were due for discharge. In addition, intervention did not involve the service user's mental health team. It consisted of a facilitated session with a researcher to complete a booklet on preferences for care, which was then circulated to professionals involved in the care of the patient.

As regards the therapeutic relationship, an RCT in the USA (Reference Swanson, Swartz and ElbogenSwanson 2006) showed that a guided discussion on choices in the planning of mental healthcare led to a better working alliance and improved service users' perception that they were receiving the services they needed at 1-month follow-up. Despite these results, some authors have raised concerns that the RCT model is inadequate to examine the effectiveness of advance statements as they are a complex social intervention occurring in an ‘intricate web of personal and professional relationships that are characterised by contesting and competing values’ (Reference ThomasThomas 2003). Although various numerical variables such as re-admission rates are easy to collect, they are only a crude indicator of the ‘success’ of advance statements. Changes on more relevant constructs such as empowerment, self-esteem, engagement and satisfaction with services should also be considered (Reference Antoniou, Estop and GilburtAntoniou 2006).

‘Revocability’ of advance statements and the Ulysses contract

The concept of an irrevocable advance statement during periods of incapacity is referred to as the Ulysses contract (Reference Srebnik and La FondSrebnik 1999), derived from Homer's Odyssey when Ulysses asked shipmates to bind him to the ship's mast and keep him there regardless of any requests he might subsequently make to be taken down. Although sorely tempted, he could not order his men to follow the voices of the sirens to their collective destruction. Even when a service user wants the advance statement to be irrevocable, it may be practically and ethically difficult to ignore service users' current wishes even at times when they do not have capacity.

Advance decisions to refuse treatment can be revoked when a service user has capacity, but not when the service user has lost capacity for the treatment decision. However, if only their wishes have been expressed in advance, the Mental Health Act 1983 Code of Practice (Department of Health 2008: Chapter 17) advises that changes in a service user's opinions need to be taken into account:

Advantages and disadvantages of advance statements

Implementing advance statements into routine clinical practice can bring many advantages, which have been discussed by service users, clinicians and researchers (Box 3).

First, advance statements can serve as a tool for empowerment and self-determination (Reference Kim, van Dorn and ScheyettKim 2007), particularly as there are concerns that, despite various initiatives, empowerment has been introduced at an organisational but not at an individual level (Reference Laugharne and PriebeLaugharne 2006). Empowerment is one of the essential elements of the Royal College of Psychiatrist's (2008) Fair Deal campaign. Many patients speak of loss of control over aspects of their life because of the effects of medication. It can be a very disempowering experience and patients give it as one of the main reasons for their disengagement from psychiatric services (Reference Priebe, Watts and ChasePriebe 2005). Honoured advance statements can have a positive impact on building therapeutic relationships, improving engagement and regaining some control over treatment in the acute phase of illness (Box 4).

Second, the process of making an advance statement itself could enhance a service user's sense of trust and collaboration, improving engagement and the therapeutic relationship (Srebrnik 2005) and enhancing communication through open collaborative discussion (Reference Williams and RigbyWilliams 2004). It can also promote responsibility in service users for the management of their illness (Reference Amering, Stastny and HopperAmering 2005a).

Third, if an advance statement is completed with a mental health professional, discussing past experiences, previous efficacious treatments and planning future treatments can promote shared decision-making. It can also reduce involuntary admissions, particularly if advance statements have been created together with the treating psychiatric team (Reference Henderson, Flood and LeeseHenderson 2004).

However, there are some concerns (Box 3). For example, if an advance statement is overridden, this may have a detrimental effect on the therapeutic relationship and increase the patient's sense of disempowerment. Also, if the statement contains explicit refusals (advance decision to refuse treatment) of all psychotropic medication, this may increase the probability of detention under the Mental Health Act in the event that treatment is deemed necessary.

In terms of completing an advance statement, concerns have been raised that there is a possibility of covert coercion if a mental health professional is helping to complete it. For example, in 1989 a self-advocacy group in the UK, Survivors Speak Out, launched ‘crisis cards’ (mental health emergency cards) as an advocacy tool. On the cards people gave instructions for further psychiatric care and nominated a contact person in the event of a crisis. However, these cards were withdrawn following complaints that mental health professionals were helping service users complete their cards and this may have resulted in service users being coerced into including potentially damaging information on the card (Reference Weston and LawsonWeston 1997).

How many service users want an advance statement?

Despite the possible advantages, only a relatively small number of service users complete an advance statement. The Mental Welfare Commission for Scotland (2007) found that 60% of service users subject to compulsion in 2006–7 knew about advance statements, but only 2–3% completed one. Likewise in the Bradford Project, which was run in conjunction with the Mental Health Foundation (Reference Thomas and CahillThomas 2004), very few service users took the opportunity to make an advance statement even following significant developmental work. This led the authors to conclude: ‘The idea that we can soothe the pain of greater compulsion with the balm of advance statements is simplistic’.

In a research setting, intense facilitation has been found to increase the completion of advance statements, but the number of service users who do not complete one remains substantial. In a study by Reference Swanson, Swartz and ElbogenSwanson et al (2006), 61% of service users completed an advance statement following guided discussion on choices compared with only 3% of those who received information only.

Barriers to advance statements

The reasons for such a low uptake remain unclear, and even a study aimed at exploring the views of service users who decided against drawing an advance statement failed to recruit sufficient numbers of people (Reference Amering, Stastny and HopperAmering 2005a). Several possible explanations have been given by service users, clinicians and researchers, and involve barriers to completion as well as implementation of advance statements (Box 5).

Conclusions

Good psychiatric practice involves discussing and negotiating treatment plans and whenever possible honouring service users' wishes. Despite this, many service users do not feel involved in treatment decisions (Reference BorneoBorneo 2008). Introducing structured and formal discussions about wishes for future treatment through completing advance statements may help to actively involve service users in treatment planning and consequently raise standards of routine care. This could be achieved through incorporating discussion on advance statements into the care programme approach process.

Completing an advance statement may have many advantages, such as reducing coercion, improving the therapeutic relationship and empowering service users, and it should be seen as a process that is regularly reviewed rather than as a one-off decision. Implementing advance statements can be met with some obstacles that need to be addressed as ‘Rights are only as visible as the mechanisms put in place for their exercise’ (Reference Amering, Stastny and HopperAmering 2005b). Even when these obstacles are overcome, not all service users would wish to complete an advance statement and an individual's reasons for not completing one need to be respected.

Future experience and research will help to ascertain the general usefulness of advance statements, as well as identify which service users and in which therapeutic contexts advance statements would be particularly beneficial. At the same time, the use of advance statements is a right for all service users, independent of potential clinical or other benefits. Mental health services need to develop a routine practice to implement that right in the most appropriate manner.

MCQs

Select the single best option for each question stem

1. 1 Advance statements

   1. a were initially introduced by Szasz as a concept of ‘psychiatric will’

   2. b are based on a new concept first introduced by the Mental Capacity Act 2005

   3. c are irrevocable, and once drawn, cannot be altered even when a person has mental capacity

   4. d are unrelated to advance decisions to refuse treatment

   5. e always prevent involuntary admission.

2. 2 Advance refusals:

   1. a ECT can be given under the Mental Health Act 1983, against the service users' valid and applicable advance decision to refuse ECT

   2. b ECT can be given under the Mental Health Act 1983 even if an authorised attorney or deputy objects to ECT

   3. c are the only important aspect of advance statements as treatment preferences are not legally binding and therefore not important in treatment planning

   4. d psychotropic medication cannot be given against a person's valid and applicable advance decision to refuse it unless it the decision is overridden by the Mental Health Act

   5. e advance decision to refuse treatment can be revised by the service user at times of incapacity.

3. 3 Advance statements:

   1. a are synonymous with advance directives

   2. b are not included in the NICE guidance on any mental health disorder

   3. c can serve as a tool for empowerment

   4. d do not need to be updated

   5. e do not have any potential disadvantages.

4. 4 Advance statements:

   1. a include only refusals and preferences of medication

   2. b cannot include information about a surrogate decision maker

   3. c cannot include preferred methods to de-escalate a crisis

   4. d contain personal care instructions that can be very useful to inform a care plan

   5. e cannot include information on ECT.

5. 5 Barriers to advance statements:

   1. a lack of resources is not recognised as a potential barrier

   2. b everyone has a positive attitude towards advance statements

   3. c reviewing past experiences may be distressing for a service user

   4. d all treatment decisions have the same threshold for mental capacity

   5. e every service user wants to make an advance statement.

MCQ answers

1

a

2

d

3

c

4

d

5

c