Advance Statements: what are they?
The following is a paper my community psychiatric nurse Alison Bass and I gave in 2004, the first professional engagement I had as an expert patient. I have now passed 1200 engagements.
A Reflection on the Use of Advance Statements in Clinical Practice: A Service User and Service Provider Perspective by Alison Bass CPN and Clive H Travis
An advance statement (also known as an "advance directive", "advance refusal" or "living will") is a way of making a person's view known if he or she should become mentally incapable of giving consent to treatment, or making informed choices about treatment, at some future time. Doctors and healthcare workers must usually take these wishes (advance statements) into account. There are however certain conditions which need to be satisfied before an advance directive can be valid and there are some limits to what a person can direct - Mind 2004
The British Medical Association has developed a code of practice (BMA 1995) about advance directives and advance statements, the use of which has increased over recent years and this has raised ethical and legal issues throughout the profession. The code takes a practical approach and acknowledges a “limited value” in the use of advance directives (refusals) and advance statements (preferences) in relation to the treatment of recurrent episodes of mental illness, especially in the light of the overriding powers of the Mental Health Act 1983 - BMA 2004
How do advance statements apply to Mental Health service users and professionals?
The use of advance statements in mental health practice was clearly advocated by the NICE Guidelines for Schizophrenia (National Institute for Clinical Excellence 2002). The guidelines gave a brief description of what an "Advance Directive" is and what it could be helpful in achieving. They, however, did not provide advice on producing these directives, although they pointed out that there were limitations regarding choice of treatment and that doctors may not follow the directive for "medical reasons". As a health professional working in the community I could see the potential of the advance directive in enabling the service user to feel listened to and having some “choice”. Early in 2003 I was engaged in discharge planning with a client who had received treatment for a relapse in schizophrenia. The gentleman concerned (who I shall refer to as “H”), had become familiar with admissions to psychiatric hospitals, and has a 10 year history of mental health problems. Despite recurrent episodes of psychosis, H remains extremely articulate, and intelligent. The experiences that H had regarding care and treatment of his mental health problems were negative from the very start. His treatment with medication had resulted in distressing negative side effects and he has now lost count of the different types of medication he has been prescribed, usually under the Mental Health Act, in hospital. H felt like he was being experimented on, not in a delusional context, but as a result of having been given so many different medications as treatment, that had made him feel, in his words, "depressed, agitated, restless, and sometimes suicidal". He expressed distrust and open disgust at psychiatric services. This anger and hurt magnified significantly when he became unwell. Following each admission H would discontinue his medication and there began the slow inexorable slide towards the next relapse. As I gained a better understanding of the illness experience from H’s perspective I began to appreciate that for him, being "ill" was preferable to being "treated for illness". Having read about them in the NICE guidelines, I introduced the possible use of an advance directive to H in discussions about relapse prevention. The intention was that by addressing the issue of his fear of being prescribed medication that had given unwanted side effects, that H would feel listened to, and by ensuring effective distribution of his treatment wishes, these would be respected where possible. These discussions engendered a more positive approach to treatment options, despite the fact that the resultant directive was quite simple. At this time there was little guidance available to me about formulation of an advance statement. Therefore I followed the basic guidelines from Rethink (Rethink 2003). H at the time of compiling the advance statement/directive, was competent to make those decisions, but I failed to provide formal evidence for this. It is not imperative to have a witness signature for an advance statement, however, in retrospect it would have been advisable for me to have done this as a health professional, especially given that H has a long history of relapse in his mental state and episodes where he has not had the competence to make appropriate decisions in his own best interest. It was also suggested by Rethink that such statements should be carefully drafted so that its terms are clear and makes it obvious as to what treatment is being refused or consented to. Unfortunately the preferred treatment, also produced some "intolerable side effects" namely akathisia and a period of depression which were the reasons “H” had declined to continue on this treatment from May. A further relapse did occur, towards the end of 2003, and despite being treated under the Mental Health Act, which overrides an advance directive, the treatment prescribed was the preference expressed in the advance statement. I have subsequently appreciated the need to revisit advance statements as part of care plan reviews or if treatment preferences change; it is appropriate to do so as long as the individual is competent to make those decisions. When H's insight fully returned in April 2004 it enabled him to consider possible alternative treatments for future relapse episodes as again, he was clear that the drawbacks to his current treatment outweighed the benefits. He discontinued this treatment prior to discharge. Providing valid and effective information to H about medication based on his experiences, he explored the possible use of an alternative atypical antipsychotic and even discussed this with fellow patients on the ward at the time. He carefully read through the information leaflets and researched side effect profiles. Discharge planning again involved the use of a further advance directive, super-ceding the previous one. (practitioners should note that it needs to be made clear on the most current advance statement that it super-cedes any or all previous statements) This time use was made of a format produced by Rethink, which includes issues wider than just medication preferences. Again it does not provide for a witness signature. Despite being discharged on no medication H subsequently commenced Olanzapine, of his own volition, to avoid future relapses, something he has never done before. The use of an advance statement was by no means the only reason for this but I feel that it played a valuable part in changing H's experience of mental health services. By viewing the client as an authority on their illness, a sentiment strongly advocated in the use of "The Tidal Model" (Buchanan-Barker 2004), and relapse episodes as a learning opportunity, it is possible in collaboration, to enable the client to reach their own conclusions about their need for treatment and for them to exercise some control over what that may constitute.
A service user perspective by Clive H Travis (patient H) July 2004
Nobody should underestimate the lengths a person will go to in order to avoid the side effect terrors of drugs prescribed for schizophrenia. For me, living anonymously on the street in another part of the country is easily the preferable alternative to drugs like Depixol (though I have observed just because one medication doesn't suit one patient it may well suit another). Any legal document lessening the possibility of the patient being terrorised with them is likely to reduce the possibility of the patient running away, or worse committing suicide. I think it a vital part of treatment, as long as you get it right.