One of the key findings in research on patients attitudes to involuntary treatment is the correlation between ‘not having a voice’ or ‘not being listened to’ and experiencing ‘coercion’.
An in-depth investigation of patients’ experience of coercion was conducted in the US by the MacArthur Research Network on Mental Health and the Law. This generously funded network under the direction of John Monahan comprised an expert multidisciplinary team. Their coercion project involved interviews concerning the admission process with over 400 patients as well as involved family members and clinicians.
Among their results were the following:
‘Legal status is only a blunt index of whether a patient experienced coercion in being admitted to a mental hospital. A significant minority of legally “voluntary” patients experience coercion, and a significant minority of legally “involuntary” patients believe that they freely chose to be hospitalized’.
‘The kind of pressures that others apply to an individual to obtain his or her admission to a mental hospital strongly affect the amount of coercion that the individual experiences: the use of “negative” pressures, such as threats and force, engender feelings of coercion; the use of “positive” pressures, such as persuasion and inducements, do not’.
‘The amount of coercion experienced is strongly related to a patient’s belief about the justice of the process by which he or she was admitted. That is, a patient’s beliefs that others acted out of genuine concern, treated the patient respectfully and in good faith, and afforded the patient a chance to tell his or her side of the story, are associated with low levels of experienced coercion’.
Thus the degree of coercion experienced was strongly associated with the degree to which the admission process followed what the researchers called ‘procedural justice’; that is, patients being allowed a ‘voice’, and being treated with respect, concern and good faith. This was true even for both involuntary and voluntary patients.
It comes as a surprise then that there has been virtually no research on whether it would make a difference to the frequency of use and perception of coercion if staff involved in admissions were trained in ‘procedural justice’ methods. I know of no relevant study.
However, there are methods that encourage patients to make choices that have been researched.
‘Advance statements’ and ‘psychiatric advance directives’
An ‘advance statement’ allows a patient, when well, to state treatment preferences in anticipation of a time in the future when, as a result of the effects of a mental illness, he or she may not be capable of making treatment decisions. The anticipated loss of decision-making capacity usually occurs during a crisis due to a relapse of illness or during a time of especially disturbing events. An important aim of an ‘advance statement’ is to give the person substantial influence over his or her treatment at such a time and thus to reduce the need for coerced treatment.
‘Advance statement’s vary along a number of dimensions: whether the process for arranging the ‘advance statement’ is patient or service provider led; whether it is legally binding or not; and, whether it is facilitated by a person independent of the clinical team. At least three major types of ‘advance statement’ have been used in mental health care: ‘crisis cards’, ‘joint crisis plans’ and ‘psychiatric advance directives’.
In a ‘crisis card’ patients state their treatment wishes or nominate a person who should be familiar with their preferences, with little or no discussion with their clinical team. It is entirely consumer led. In some jurisdictions, for example, under the Mental Capacity Act 2005 in England and Wales stated treatment refusals now have legal force, but can be overridden if the person is placed on an involuntary treatment order. The uptake of ‘crisis cards’ has been very limited.
Joint Crisis Plans
This is the type of advance statement with which I have been mainly involved. In contrast to ‘crisis cards’, the ‘joint crisis plan’ is the product of a structured discussion between patient (usually accompanied by a relative, friend or advocate) and the clinical team (usually the psychiatrist and case-manager) that aims to reach an agreement on what measures should be taken if a relapse should occur in the future. A critical element in our method is the involvement of a facilitator, independent of the clinical team, who ensures that the patient’s ‘voice’ is heard. A ‘joint crisis plan’ is not generally legally-binding (although as noted above specific treatment refusals – but not treatment requests – may have legal force in some jurisdictions, but may be overridden by a compulsory treatment order). The clinical team makes it explicit that while it will do its best to comply with the preferences and terms agreed in the ‘joint crisis plan’, it cannot guarantee to do so in all respects.
While the ‘joint crisis plan’ is service provider initiated, it aims at achieving an advance agreement in which the patient has played at least an equal role. Indeed, in our work, what finally appears in the ‘joint crisis plan’, including the exact wording, is determined by the patient (though agreed by the clinician).
Our type of ‘joint crisis plan’ usually comprises much more than a statement of the patient’s treatment preferences or refusals in the event of a relapse or crisis. For instance, it may include details of the current treatment plan (including medication and dosages), early signs of relapse; what has proven helpful in the past in arresting a relapse; what treatments have proven successful (or unsuccessful) when relapse has become established; who should be contacted to help; what symptoms or behaviours would indicate that admission would now be the right step; adverse drug effects or allergies; and, practical issues that need attention, for example, who will make sure the patient’s home is secure in the event of hospitalization, who will look after pets or plants, cancel milk deliveries, and so on). The specificity of content in a ‘joint crisis plan’, based on a careful analysis of past illness episodes, is an important advantage since relapse in most people tends to occur in a rather stereotyped manner.
This is what a ‘joint crisis plan’ might say:
JOINT CRISIS PLAN
If I appear to be experiencing ‘mental health’ difficulties that require decisions to be taken ether against my wishes or in the absence of my agreement then I request that my sister, Mrs JX, be contacted immediately, be informed of what is happening and requested to attend as a matter of urgency. She has agreed to this.
My current Care and Treatment Plan
My mental health problem or diagnosis: I have a diagnosis of schizophrenia
Physical illnesses and allergies: I am allergic to penicillin; I am a diabetic and take Metformin PR 2000 mg daily
My current care/treatment plan: I see my care-coordinator, PJ, every two weeks, and my consultant, Dr PS, every month.
Current medication and dosage: I take clozapine 500 mg daily.
Circumstances that may lead to me becoming unwell or have done in the past: Not getting enough sleep, stopping my medication, arguments with my sister
What happens when I first start to become unwell: I become suspicious of people and jump to conclusions about their intentions. I sleep badly. When I start to hear voices – even though I don’t believe they’re voices at the time – then I am definitely ill and need treatment.
Treatments or other things that have, or have not, been helpful during crises or relapses in the past: My sister has a calming influence on me. It is better if I don’t see my mother when I am in a bad state as she gets too distressed and it makes me feel worse.
Care in a Crisis:
What I would like to be done when I first start to become unwell: I shouldn’t be left alone for too long as I get more paranoid when I feel isolated. If possible, I would like to stay with my sister for a few days
Preferred treatment or social care during a crisis or relapse: Lorazepam(even IM) helps to calm me until my clozapine is re-established (if I have stopped it or missed doses).. I am happy for the Home Treatment Team to see me, but I would like to be warned when they are coming.
Specific refusals regarding treatment during a crisis or relapse: I don’t want haloperidol as its side-effects are intolerable
Circumstances in which I would wish to be admitted to hospital for treatment: If I haven’t slept for more that 3 hours a night for 3 nights; when I stop answering my phone; when the voices say I’m a target of MI5; when I start accusing the neighbours of spying on me.
Practical Help in a Crisis: If I am admitted to hospital I would like my sister or mother to check that my flat is secure and to dispose of all perishable food. Please ask them to also bring me my iPod to hospital if it’s still at home, and my Bible.
Agencies or people that have copies of this card or agreement: A record in my case notes and on the electronic records system for hospital staff; my GP; my sister (JS); A&E department at my General Hospital.
With my colleagues at the Institute of Psychiatry, Graham Thornicroft, Kim Sutherby and Claire Henderson, I have been an investigator on a series of studies looking at the feasibility and effectiveness of ‘joint crisis plans’. Considerable time was spent developing with patients the best way of implementing the intervention. We showed it was feasible and found that patients formulating joint crisis plans said the agreements with the clinicians were made without pressure. They said they felt more in control of their mental health problems as a result of making a ‘joint crisis plan’, and that they would recommend the intervention to others.
Two randomized controlled trials followed. The first involved 160 patients from eight community mental health teams in South-east England who had a diagnosis of a psychotic illness or bipolar disorder, and who had had at least one admission in the previous two years. Almost 40% of patients who were eligible took up the opportunity to complete a ‘joint crisis plan’. We found that compulsory admissions over a 15 month period were halved compared to the control group who did not make a crisis plan(13% versus 27%). Given the success of this trial, we gained funding from the Medical Research Council for a larger trial – indeed a huge trial for a complex intervention of this kind – this time involving 64 mental health teams from Birmingham, Manchester and Preston, as well as London. Five hundred and sixty-nine patients participated. To our disappointment, we failed to replicate the finding of a reduction in the use of compulsion for those who had made a ‘joint crisis plan’. We believe this was because of the lesser degree of ‘buy-in’ from clinicians this time. There was less enthusiasm to be part of the research project. Nonetheless the patients were again positive. There was also a small randomized controlled trial of joint crisis plans for patients who repeatedly self-harm. There was no difference in the rates of self-harming on follow-up, but 85% of the patients said they would recommend the intervention to others. These positive endorsements perhaps suggest that what was important was the opportunity for patients to voice their preferences and for them to be respected.
A smaller study from Holland has shown a reduction in court-ordered involuntary hospitalisations for patients with a crisis plan.
Thus a clear conclusion concerning the impact of ‘joint crisis plans’ on involuntary admissions is not possible at present. There is a suggestion that they may be effective, but only if clinical teams implement them fully. What is striking about our studies, though, is the frequency of readmissions. In the large study, approximately 20% of patients were readmitted on a compulsory order within 18 months, with a further 10% or so on a voluntary basis.
Psychiatric Advance Directives
Advance directives are in principle legally binding. The directives may be of three kinds: first, specified treatments that are refused or requested; second, statements about personal values, attitudes or general preferences that may be used as a guide to those making decisions about treatment for the patient; and third, nomination of a person to act a ‘substitute’ or ‘proxy’ decision-maker. A psychiatric advance directive assumes that the patient had decision-making capacity when it was made, and that the circumstances in which the psychiatric advance directive is triggered are those that were anticipated.
Medical advance directives have legal force in the US. However, while specific psychiatric advance directive legislation enacted in some 25 states in the US makes them ostensibly legally binding, there is some uncertainty about circumstances in which psychiatric advance directives may be overridden. Civil commitment legislation may do so if it specifically authorizes involuntary treatment. In some cases the directive may be overridden it conflicts with ‘generally accepted community practice standards’, or if it conflicts with emergency treatment. However, if a separate decision concerning consent is required before involuntary treatment can be imposed on a patient following detention in hospital (the detention being based, for example, on a separate dangerousness criterion) then a psychiatric advance directive may prevail. The significant case here is one (Hargrave v Vermont) heard by the US Court of Appeals, Second Circuit, which upheld an advance directive refusing all medication for a psychosis on the grounds that failure to do so would amount to discrimination against persons with a mental disorder. The court ruled that if advance directives for those with other disorders cannot be overridden, it should also be so for those with a mental disorder.
It is noteworthy that the evidence from the US on psychiatric advance directives to date shows that refusal of all treatment alternatives is rare. We have also found this in our studies of ‘joint crisis plans’.
A variant of the psychiatric advance directive, termed a facilitated psychiatric advance directive has been introduced following research revealing an apparently widespread appeal of psychiatric advance directives to many patients, yet few actually making one. Difficulties in understanding the implications of a psychiatric advance directive and the practical complexities in their execution act as deterrents to their adoption. In an facilitated psychiatric advance directive, an attempt is made to overcome these obstacles by employing a trained facilitator who explains what a psychiatric advance directive involves and, if the patient chooses to opt for one, assists with its completion. The service provider may also be asked to become involved in planning the psychiatric advance directive.
A randomised controlled study of facilitated psychiatric advance directives has indeed shown that facilitation results in a highly significant increase in the number of patients who decide to make a psychiatric advance directive (61% v 3% of controls). Noteworthy is that at one month follow-up, those with a facilitated psychiatric advance directive reported a much better working alliance with their clinicians and were more likely to say that they received the services they needed. A later report from this study found that the number of ‘coercive interventions’ over the succeeding two years for those who made an advance directive was considerably fewer compared to patients who chose not to make one.
Overall then it appears that some forms of ‘advance statement’ can reduce coercion and improve outcomes. Patients may be empowered by the process; from a practical point of view, the information contained in an ‘advance statement’ may ensure that the most appropriate treatment is given when information from other sources is unavailable. Independent facilitation, either in a ‘joint crisis plan’ or a facilitated psychiatric advance directive, may be an important factor.
The dialogue between patient and mental health professionals may be a key ingredient. My personal experience, having been a consultant who negotiated a joint crisis plan with a number of my patients in the early stages of the development of the intervention, was that I established a different kind of relationship with those patients. I felt I knew them much better and I believe that they trusted me more.