I’ve done a little research on advance decisions to refuse treatment (ADRT) forms in dementia for an upcoming BBC Radio 4 episode of Inside the ethics committee, to be broadcast on 31 July 2014 at 9am.
The Alzheimer’s Society have a form and a fact-sheet. Dementia Care also has some information on their website which includes a link to an Age UK factsheet.
Personally, I prefer the Compassion in Dying form (plus accompanying guidance notes) to the Alzheimer’s Society form. The main reason for this is that the triggering condition for the refusal (i.e. when the refusal is to become effective) is rather strange in the Alzheimer’s Society form. It’s when ‘the gravity of my condition/suffering is such that treatment seems to be causing distress beyond any possible benefit’. The goal of an ADRT is to refuse treatment which others would or might think is in your best interests (otherwise there’s little point – if everyone agrees the treatment is not in your best interests then it would not be lawful to give it under the Mental Capacity Act 2005). This triggering condition doesn’t seem to me to leave much (if any) scope for this. If the treatment causes distress beyond any possible benefit then it is hard to see how it could be given as it would not be in your best interests. The balancing of burdens against benefits is exactly what the courts (and the Mental Capacity Act Code of Practice) require in order to reach a decision on your best interests.
You can contrast this with the triggering conditions (there is a choice) in the Compassion in Dying form, the most relevant one of which is: ‘I suffer serious impairment of the mind or brain with little or no prospect of recovery together with a physical need for life-sustaining treatment/interventions’. Here it is quite possible that different people will have different views on whether life-sustaining treatment is in your best interests as the ADRT will be triggered (in dementia patients) once their condition constitutes a serious impairment and there is little or no prospect of recovery. So the ADRT will have a role to play.
Compassion in Dying also have a free phone line you can call to get help in filling out the form; details are provided within the form as well as on their website.
NB: Compassion in Dying has a relationship with Dignity in Dying. They are separate organisations but they work out of the same offices.