MY ADVANCE STATEMENT – WHY IT IS IMPORTANT TO ME AND HOW I DEVELOPED ONE
Graham Morgan
MWC Webinar 29 April 2021
I am going to speak for a wee while on the importance of advance statements to me and how I made one. But first of all a little health warning, I know they are important but personally I don’t find them very important at all, I generally find that I am treated well by people when I am in hospital and the things that I don’t like are not things that can be catered for in an advance statement.
The bits that upset me when in hospital or for that matter in the community are the small glances, the sigh that says a person would rather not be in my company, the reply to a question that means that a person has not listened to my concern, in fact made up their mind about me long before I tried to explain what I was going through or wanted them to understand. It is the tiny marks of respect and dignity that however much they are enshrined in human rights legislation cannot be backed up or challenged easily when vulnerable and in hospital.
However a personal statement might do the trick with this; in many ways I much prefer the idea of a personal statement to that of an advance statement. I would like to write a few pages saying who I am, what makes me tick, what makes me upset what makes me comfortable and safe, so that when I am in hospital and pleading for the right to die; there are people around me who, though they don’t know me, have some glimpse into me as a person. To me that is one of the key things I need when I am in hospital or in distress or some strange place. I need people to have some idea of me as a person and not as a just a case or a problem devoid of any of the needs any human has when unwell.
Anyway back to advance statements. If I had an advance statement that said what I think it should say rather than what I can get away with then I would be able to stop medication, able to act on my evil and rid the world of me and I suppose that this is where people can get stuck. Capacity is a difficult thing to come to terms with or at least I think it is and so too are our wishes.
If I step outside of myself, I find it hard to work out what I really want. I want to be real but the real me is what people think is a delusion. I want to die because of that so called delusion but equally I want stopped from dying. How do you untangle such things and how do you express such things in a legal document such as an advance statement?
I think ideas of capacity and impaired judgement and of illness and wellness are far more fluid and difficult to cater for when looking at legal definitions and policies and that despite the obvious need for advance statements that this can confuse both people promoting them and writing them.
Despite this advance statements are a vital part of our legislation and with the increasing emphasis on supported decision making as opposed to substitute decision making, when caring for people like me, need to be respected as far as possible. They may only come into force when we are sectioned but they are a powerful way of conveying our wishes for how we want treated when we have the capacity to give our opinions.
My very first advance statement was pretty much written on the back of an envelope when I was about to be admitted to hospital. My CPN had encouraged me to do it and because I was not in the best of places she indicated which areas of the statement I had capacity to make requests and which areas I did not. So, for instance, she agreed that I had the capacity to say things about medication and who I wanted informed about my stay but did not think I had the capacity to say I wanted incinerated because I was an evil devil.
The whole of that advance statement was overruled or maybe it was just not seen as valid. Either way some of my wishes, which my CPN said I had a right to say, were certainly acted against but to be honest, in the end I was glad that they were.
I have always assumed that advance statements would only be overruled when a patient had clearly asked for things that indicated their judgement was impaired or had asked for an action that was illegal or unethical to provide and had always assumed that such documents were clearly great ways of ensuring a good and person centred service but in preparing for this talk was told of a person who was not allowed to make arrangements for the care of her child, which was a request in her advance statement. There were good reasons that this did not happen but it can feel, when what you think you are asking for seems to you reasonable and yet is not being provided that there is little point to them. Equally, when we talk about asking for treatment and care, what we get can only be as good as the service is in reality. If that service is very poor then we are still likely to feel let down and dismissed.
I couldn’t be bothered to draw up an advance statement the last time I came out of hospital. It just did not seem that important and although I knew of its importance and its need and indeed was on the Milan Committee that made these things happen, I just did not have the energy or the motivation to do so: I couldn’t be bothered.
My new CPN pestered me very politely to create an advance statement; explained the reasons that I already knew, encouraged me gently until, some months after I was discharged, I wrote a ten page letter about how I would like to be treated.
Rather kindly my CPN helped me reduce that tome into about fifteen different bullet points and we incorporated much of the rest of it into my wrap plan which was also kept in my notes.
There are definitely some things I really want to happen if I end up back in hospital. I really want privacy; I don’t even share a room to sleep in with my partner because I snore so loudly. I want the least sedating drugs possible; I work hard and need to be alert to maintain the standard of my work. I want access to my lap top and though it is maybe hard to see that as a part of my care and treatment; self- expression and creativity are key to my wellbeing and ability to communicate at times when my world is fractured and I am on constant obs.
There are all sorts of things in the advance statement that seem to me to be very reasonable; seem basic. But I wonder now how achievable they are.
One thing I say is that I don’t want to be treated by people who don’t like me. To me that is vital; when you are in the company of someone who is meant to be caring for you but is obviously impatient with you or just plain fed up treating you then you can suffer hugely and have your recovery hugely delayed.
The last time my CTO was renewed, the tribunal made two recommendations. Although I had handed over my advance statement, the MHO had neglected to sign it, a basic mistake that can occur when people are in a hurry, so it is now signed and valid. But they also made a key point.
They said my advance statement is almost entirely about hospital admission and yet for many years I have been on a CTO in the community and that I would probably want to update it to take account of treatment at home.
When I did so I immediately noticed that this piece of paper which I fondly thought accurately stated my wishes, now no longer did. First of all it was out of date and referred to my wife when I am now divorced from her but also, crucially, I had originally said I wanted the minimum time in hospital and yet now I feel the opposite. Now that I no longer live alone but instead with my partner and her young children, the most important thing to me is that I am out of the house and elsewhere if life gets difficult. I do not want two beautiful and very innocent children to witness me in considerable distress talking about incomprehensible things and acting on my wish to die or self harm. So now, in contrast, I want in hospital for as long as I might damage the people I love.
And of course, for an advance statement to be of use it needs to be a living document. The last time I actually looked at my advance statement was just before my last tribunal one and a half years ago. To be honest I am not entirely sure what it says nowadays. I am a firm believer in advance statements and very much want you to encourage people to create their own ones; they are the one of the key tools we have to respecting our wishes when we are at our most vulnerable but, despite this, we are all too human. We do not fit into systems easily. We may agree they are a good idea but just might not have the energy or the motivation to create one or update one. It’s a bit like creating a will; of course we should do it but it took me eight years from deciding I needed to create my own will to actually complete one. I don’t think that is unusual and, of course, a will is legally binding unlike an advance statement. I think that is where your enthusiasm and support is so important for people like me who think
“Maybe one day I will have a look at how I want cared for; just not today.”
It is perhaps notable that my advance statement has been witnessed every time I have changed it over the last decade; that, although in some areas of my life people consider my judgement impaired, hence the fact that I am on a CCTO; that I am still seen as having the capacity to comment on how I want treated in most areas of my life. That reality should maybe also be thought about more when we are inpatients and still retain capacity to give views and make most decisions about what we do and don’t want in our care even though in some areas of our lives we have lost the ability to make the decisions we would normally make.
For me my advance statement is a liferaft – I know it may be leaky and might get run down and sink but it lets me communicate key things about my life and needs that I struggle to do when in a terrible place and prone to having some of my views discounted on account of this.
Thank you
For more information on the Mental Welfare Commission visit : https://www.mwcscot.org.uk/