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‘Advance statements’ in psychiatry
coercion and community care
‘Advance statements’ in psychiatry
(JCPs). The Care Programme Approach contains a crisis plan component which could provide the basis for an AS, but at present it is conventionally generated by the treatment team and not the patient.
George Szmukler
Psychiatric advance directives Psychiatric advance directives (PADs) are advance statements that are legally binding. In the USA, the Patient SelfDetermination Act of 1990 requires that admitted patients to federally funded hospitals, including psychiatric patients, must be notified of their right to make an AD. Furthermore, some 22 states have enacted specific PAD statutes. In England and Wales, advance directives for treatment refusal are included in the Mental Capacity Act 2005, but they can be ‘trumped’ if a clinician can employ the Mental Health Act 1983. In Scotland, the Mental Health (Care and Treatment) Act 2003 (which came into effect in October 2005) makes possible ‘advance statements’ containing the patient’s preferences for treatment. The clinician must take into account the AS, and if the patient’s expressed wishes are not followed, he or she must send to the Mental Welfare Commission (and others) a written record giving the reasons. Although PADs as implemented in the USA are said to be legally binding, there is some uncertainty about when they can be overridden.1 Civil commitment legislation may do so if it specifically authorizes involuntary treatment as well as detention; however, if a separate decision concerning consent is required before involuntary treatment can be imposed, then a PAD may prevail. Some PAD statutes, for example in Pennsylvania, stipulate that the patient’s wishes may be overridden if they violate ‘accepted standards of care’. How this should be interpreted is not clear and relevant legal cases are currently being considered. Among other controversial issues is the question of whether a PAD bearing a treatment refusal which is very likely to lead to a life-threatening risk should be respected or not.2 The directives in a PAD may be of three kinds: first, specific instructions about treatments which are refused or requested; second, statements about personal values or general preferences to guide decision-making; and third, nomination of a person to act a ‘substitute’ or ‘proxy’ decision-maker for the patient. A PAD assumes that the patient had decision-making capacity at the time of its formulation, and that the circumstances in which capacity is lost and the PAD becomes triggered are those which were anticipated. A variant of PADs, termed facilitated PADs (F-PADs) has recently been introduced. This innovation followed research in the USA which demonstrated a large latent demand for PADs among patients, who were deterred from developing a PAD by difficulties in understanding some of their implications or by the practical complexities involved. A trained facilitator through a structured discussion explains what a PAD involves and, if the patient chooses to opt for one, provides assistance with its completion.3
Abstract An ‘advance statement’ allows a patient to state treatment preferences in anticipation of a time in the future when, as a result of a mental disability, he or she may no longer be able to make treatment decisions. A number of types of advance statements in psychiatry can be described: ‘advance directives’ (and ‘facilitated advance directives’); ‘crisis cards’; and ‘joint crisis plans’. They differ according to a number of characteristics – the degree to which they have legal force, whether the clinical team is involved in their formulation, and whether a third party acts as a facilitator. There is accumulating evidence that some forms of advance statement empower patients and reduce the need for coercive treatments.
Keywords advance directives; advance statements; coercion; crisis cards; empowerment; joint crisis plans
An ‘advance statement’ (AS) allows a patient, when well, to state treatment preferences in anticipation of a time in the future when, as a result of a mental disability, he or she may not be able to make treatment decisions. In psychiatry, the anticipated loss of treatment decision-making capacity usually occurs during a relapse of a psychosis or as a dementing illness progresses. The term AS is used here in a generic sense as there are a number of specific forms that such statements may take. These are described below. The value of ASs may be both ethical and practical. From an ethical point of view, informed consent to future treatment is obtained, supporting the expression of a patient’s autonomy. An important aspect of this is the potential for a reduction in the use of coercion in psychiatric treatment. From a practical point of view, the information contained in an AS may help clinicians to choose the most appropriate treatment when information from other sources may be difficult to obtain.
Types of ‘advance statements’ To date, three types of AS can be described: ‘psychiatric advance directives’ (PADs); ‘crisis cards’ (CCs); and ‘joint crisis plans’
Crisis cards In a CC patients state their treatment wishes or nominate a person who should be familiar with their wishes without reference to their treatment team. Although advocated by some patient groups, their uptake has been very limited.4
George Szmukler DPM FRCPsych is Dean of the Institute of Psychiatry, King’s College London, UK, and Consultant Psychiatrist, South London and Maudsley NHS Trust. His interests include social, ethical and legal aspects of psychiatry. Developing methods for reducing coercive treatments is a particular interest. Conflicts of interest: none declared.
PSYCHIATRY 6:2
49
© 2006 Elsevier Ltd. All rights reserved.
coercion and community care
Types of ‘advance statements’ and how they differ
Legally binding* Independent facilitator Formulated collaboratively with clinical team
Psychiatric advance directive (PAD)
Facilitated psychiatric advance directive (F-PAD)
Crisis Card (CC)
Joint Crisis Plan (JCP)
+ − −
+ + −
− − −
− + +
*The extent to which PADs and F-PADs are legally binding is unclear, with legal challenges being mounted in the USA (see text). It is clear in the UK that powers under the Mental Health Act prevail over a PAD.
Table 1
refuse all treatments, though most refused specific medications; and that at 1 month follow-up, those with an F-PAD reported a significantly better working alliance with their clinicians and were significantly more likely to say that they received the services they needed.3 A randomized controlled trial of JCPs. reported that almost 40% of patients who were eligible took up the opportunity to complete a JCP.6 Eligible patients were those with a psychosis and at least one admission to hospital in the previous 2 years. The study found that the rate of compulsory admissions to hospital was halved among patients with JCPs, a significant difference. There was a non-significant trend for reduced hospitalizations. Although the numbers were small, there was also a significant reduction in violent incidents in the JCP group. An earlier qualitative study found that patients who had JCPs reported that their advance statements were un-coerced, that they felt more empowered and more in control of their treatment, and they would recommend JCPs to others.5
Joint crisis plans In contrast to CCs, the JCP involves a particular kind of discussion between the patient and the service provider and seeks agreement on what should be done in the case of relapse.5,6 Those taking part include the patient; a relative, friend or advocate; the patient’s care coordinator; the psychiatrist; and, importantly, a facilitator – to date, a mental health professional who is independent of the clinical team. The role of the last is to ensure that the patient’s voice is heard, and that he or she has the last word on what should be included in the JCP. A successful discussion results in an agreement between the patient and clinical team on the content of the JCP. This may comprise much more than a statement of treatment preferences or refusals in the event of a crisis. It may include early signs of relapse, what has proven helpful in the past in aborting a relapse, what treatments have proven successful (or unsuccessful) when relapse has become established, informal or formal carers who should be contacted, when admission would be indicated, adverse drug effects, and practical needs (e.g. who should look after a pet in the event of hospitalization). The JCP’s specificity of content, based on a collaborative analysis of past illness episodes, is a great strength. It is made clear that treatment under the Mental Health Act could prevail over JCP instructions, but that every effort will be made to follow the agreed crisis plan.
Conclusions These findings suggest ASs may indeed empower patients and result in improved outcomes. JCPs show that patients can effectively voice their treatment wishes outside a legal framework and this may result in less use of coercive treatments. The dialogue between patient and service provider is probably a critical success factor. JCPs could be a useful option even in jurisdictions where PADs are possible. They may also be able to exist alongside legislation permitting involuntary outpatient commitment, where they could be regarded as a less restrictive alternative. ◆
A comparison of AS instruments It will be seen from the descriptions above that PADs, F-PADs, CCs and JCPs differ according to a number of characteristics – the degree to which they have legal force, whether the clinical team is involved in their formulation, and whether a third party acts as a facilitator (Table 1). Research evidence ADs in medicine, usually relating to end-of-life decisions, have not proven as popular nor as effective in influencing care, as had been hoped.7 However, PADs, especially in psychosis, have a significant advantage. Patients and clinicians are able to predict quite accurately what problems a relapse will present for an individual, since they will have occurred before and tend to be similar each time. A randomized controlled study of F-PADs has shown: a very significant increase in the number of patients who decide to make a PAD (61% vs 3% of controls); that no patients used a PAD to
PSYCHIATRY 6:2
References 1 Swanson JW, McCrary SV, Swartz MS, Elbogen EB. Superseding psychiatric advance directives: ethical and legal considerations. J Am Acad Psychiatry Law 2006; 34: 385–94. 2 Brock DW. Trumping advance directives. Hastings Cent Rep 1991; 21: S5–S6. 3 Swanson JW, Swartz MS, Elbogen EB, et al. Facilitated psychiatric advance directives: a randomized trial of an intervention to foster advance treatment planning among persons with severe mental illness. Am J Psychiatry 2006; 163: 1943–51.
50
© 2006 Elsevier Ltd. All rights reserved.
coercion and community care
4 Sutherby K, Szmukler GI. Crisis cards and self-help crisis initiatives. Psychiatr Bull 1998; 22: 4–7. 5 Sutherby K, Szmukler GI, Halpern A, et al. A study of ‘crisis cards’ in a community psychiatric service. Acta Psychiatr Scand 1999; 100: 56–61. 6 Henderson C, Flood C, Leese M, Thornicroft G, Sutherby K, Szmukler G. Effect of joint crisis plans on use of compulsory treatment in
PSYCHIATRY 6:2
psychiatry: single blind randomised controlled trial. Br Med J 2004; 29: 136–40. 7 Teno J, Lynn J, Wenger N, et al. Advance directives for seriously ill hospitalized patients: effectiveness with the patient selfdetermination act and the SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1997; 45: 500–07.
51
© 2006 Elsevier Ltd. All rights reserved.
‘Advance statements’ in psychiatry
(JCPs). The Care Programme Approach contains a crisis plan component which could provide the basis for an AS, but at present it is conventionally generated by the treatment team and not the patient.
George Szmukler
Psychiatric advance directives Psychiatric advance directives (PADs) are advance statements that are legally binding. In the USA, the Patient SelfDetermination Act of 1990 requires that admitted patients to federally funded hospitals, including psychiatric patients, must be notified of their right to make an AD. Furthermore, some 22 states have enacted specific PAD statutes. In England and Wales, advance directives for treatment refusal are included in the Mental Capacity Act 2005, but they can be ‘trumped’ if a clinician can employ the Mental Health Act 1983. In Scotland, the Mental Health (Care and Treatment) Act 2003 (which came into effect in October 2005) makes possible ‘advance statements’ containing the patient’s preferences for treatment. The clinician must take into account the AS, and if the patient’s expressed wishes are not followed, he or she must send to the Mental Welfare Commission (and others) a written record giving the reasons. Although PADs as implemented in the USA are said to be legally binding, there is some uncertainty about when they can be overridden.1 Civil commitment legislation may do so if it specifically authorizes involuntary treatment as well as detention; however, if a separate decision concerning consent is required before involuntary treatment can be imposed, then a PAD may prevail. Some PAD statutes, for example in Pennsylvania, stipulate that the patient’s wishes may be overridden if they violate ‘accepted standards of care’. How this should be interpreted is not clear and relevant legal cases are currently being considered. Among other controversial issues is the question of whether a PAD bearing a treatment refusal which is very likely to lead to a life-threatening risk should be respected or not.2 The directives in a PAD may be of three kinds: first, specific instructions about treatments which are refused or requested; second, statements about personal values or general preferences to guide decision-making; and third, nomination of a person to act a ‘substitute’ or ‘proxy’ decision-maker for the patient. A PAD assumes that the patient had decision-making capacity at the time of its formulation, and that the circumstances in which capacity is lost and the PAD becomes triggered are those which were anticipated. A variant of PADs, termed facilitated PADs (F-PADs) has recently been introduced. This innovation followed research in the USA which demonstrated a large latent demand for PADs among patients, who were deterred from developing a PAD by difficulties in understanding some of their implications or by the practical complexities involved. A trained facilitator through a structured discussion explains what a PAD involves and, if the patient chooses to opt for one, provides assistance with its completion.3
Abstract An ‘advance statement’ allows a patient to state treatment preferences in anticipation of a time in the future when, as a result of a mental disability, he or she may no longer be able to make treatment decisions. A number of types of advance statements in psychiatry can be described: ‘advance directives’ (and ‘facilitated advance directives’); ‘crisis cards’; and ‘joint crisis plans’. They differ according to a number of characteristics – the degree to which they have legal force, whether the clinical team is involved in their formulation, and whether a third party acts as a facilitator. There is accumulating evidence that some forms of advance statement empower patients and reduce the need for coercive treatments.
Keywords advance directives; advance statements; coercion; crisis cards; empowerment; joint crisis plans
An ‘advance statement’ (AS) allows a patient, when well, to state treatment preferences in anticipation of a time in the future when, as a result of a mental disability, he or she may not be able to make treatment decisions. In psychiatry, the anticipated loss of treatment decision-making capacity usually occurs during a relapse of a psychosis or as a dementing illness progresses. The term AS is used here in a generic sense as there are a number of specific forms that such statements may take. These are described below. The value of ASs may be both ethical and practical. From an ethical point of view, informed consent to future treatment is obtained, supporting the expression of a patient’s autonomy. An important aspect of this is the potential for a reduction in the use of coercion in psychiatric treatment. From a practical point of view, the information contained in an AS may help clinicians to choose the most appropriate treatment when information from other sources may be difficult to obtain.
Types of ‘advance statements’ To date, three types of AS can be described: ‘psychiatric advance directives’ (PADs); ‘crisis cards’ (CCs); and ‘joint crisis plans’
Crisis cards In a CC patients state their treatment wishes or nominate a person who should be familiar with their wishes without reference to their treatment team. Although advocated by some patient groups, their uptake has been very limited.4
George Szmukler DPM FRCPsych is Dean of the Institute of Psychiatry, King’s College London, UK, and Consultant Psychiatrist, South London and Maudsley NHS Trust. His interests include social, ethical and legal aspects of psychiatry. Developing methods for reducing coercive treatments is a particular interest. Conflicts of interest: none declared.
PSYCHIATRY 6:2
49
© 2006 Elsevier Ltd. All rights reserved.
coercion and community care
Types of ‘advance statements’ and how they differ
Legally binding* Independent facilitator Formulated collaboratively with clinical team
Psychiatric advance directive (PAD)
Facilitated psychiatric advance directive (F-PAD)
Crisis Card (CC)
Joint Crisis Plan (JCP)
+ − −
+ + −
− − −
− + +
*The extent to which PADs and F-PADs are legally binding is unclear, with legal challenges being mounted in the USA (see text). It is clear in the UK that powers under the Mental Health Act prevail over a PAD.
Table 1
refuse all treatments, though most refused specific medications; and that at 1 month follow-up, those with an F-PAD reported a significantly better working alliance with their clinicians and were significantly more likely to say that they received the services they needed.3 A randomized controlled trial of JCPs. reported that almost 40% of patients who were eligible took up the opportunity to complete a JCP.6 Eligible patients were those with a psychosis and at least one admission to hospital in the previous 2 years. The study found that the rate of compulsory admissions to hospital was halved among patients with JCPs, a significant difference. There was a non-significant trend for reduced hospitalizations. Although the numbers were small, there was also a significant reduction in violent incidents in the JCP group. An earlier qualitative study found that patients who had JCPs reported that their advance statements were un-coerced, that they felt more empowered and more in control of their treatment, and they would recommend JCPs to others.5
Joint crisis plans In contrast to CCs, the JCP involves a particular kind of discussion between the patient and the service provider and seeks agreement on what should be done in the case of relapse.5,6 Those taking part include the patient; a relative, friend or advocate; the patient’s care coordinator; the psychiatrist; and, importantly, a facilitator – to date, a mental health professional who is independent of the clinical team. The role of the last is to ensure that the patient’s voice is heard, and that he or she has the last word on what should be included in the JCP. A successful discussion results in an agreement between the patient and clinical team on the content of the JCP. This may comprise much more than a statement of treatment preferences or refusals in the event of a crisis. It may include early signs of relapse, what has proven helpful in the past in aborting a relapse, what treatments have proven successful (or unsuccessful) when relapse has become established, informal or formal carers who should be contacted, when admission would be indicated, adverse drug effects, and practical needs (e.g. who should look after a pet in the event of hospitalization). The JCP’s specificity of content, based on a collaborative analysis of past illness episodes, is a great strength. It is made clear that treatment under the Mental Health Act could prevail over JCP instructions, but that every effort will be made to follow the agreed crisis plan.
Conclusions These findings suggest ASs may indeed empower patients and result in improved outcomes. JCPs show that patients can effectively voice their treatment wishes outside a legal framework and this may result in less use of coercive treatments. The dialogue between patient and service provider is probably a critical success factor. JCPs could be a useful option even in jurisdictions where PADs are possible. They may also be able to exist alongside legislation permitting involuntary outpatient commitment, where they could be regarded as a less restrictive alternative. ◆
A comparison of AS instruments It will be seen from the descriptions above that PADs, F-PADs, CCs and JCPs differ according to a number of characteristics – the degree to which they have legal force, whether the clinical team is involved in their formulation, and whether a third party acts as a facilitator (Table 1). Research evidence ADs in medicine, usually relating to end-of-life decisions, have not proven as popular nor as effective in influencing care, as had been hoped.7 However, PADs, especially in psychosis, have a significant advantage. Patients and clinicians are able to predict quite accurately what problems a relapse will present for an individual, since they will have occurred before and tend to be similar each time. A randomized controlled study of F-PADs has shown: a very significant increase in the number of patients who decide to make a PAD (61% vs 3% of controls); that no patients used a PAD to
PSYCHIATRY 6:2
References 1 Swanson JW, McCrary SV, Swartz MS, Elbogen EB. Superseding psychiatric advance directives: ethical and legal considerations. J Am Acad Psychiatry Law 2006; 34: 385–94. 2 Brock DW. Trumping advance directives. Hastings Cent Rep 1991; 21: S5–S6. 3 Swanson JW, Swartz MS, Elbogen EB, et al. Facilitated psychiatric advance directives: a randomized trial of an intervention to foster advance treatment planning among persons with severe mental illness. Am J Psychiatry 2006; 163: 1943–51.
50
© 2006 Elsevier Ltd. All rights reserved.
coercion and community care
4 Sutherby K, Szmukler GI. Crisis cards and self-help crisis initiatives. Psychiatr Bull 1998; 22: 4–7. 5 Sutherby K, Szmukler GI, Halpern A, et al. A study of ‘crisis cards’ in a community psychiatric service. Acta Psychiatr Scand 1999; 100: 56–61. 6 Henderson C, Flood C, Leese M, Thornicroft G, Sutherby K, Szmukler G. Effect of joint crisis plans on use of compulsory treatment in
PSYCHIATRY 6:2
psychiatry: single blind randomised controlled trial. Br Med J 2004; 29: 136–40. 7 Teno J, Lynn J, Wenger N, et al. Advance directives for seriously ill hospitalized patients: effectiveness with the patient selfdetermination act and the SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1997; 45: 500–07.
51
© 2006 Elsevier Ltd. All rights reserved.