A right to choose

Having recently been involved in the preparation of a precedent advance decision for my department, I have been prompted to consider these documents and the way
in which they are used. The fact that there is no set 'advance decision form' may put practitioners off recommending them to clients, but they do have a useful place and should be discussed alongside lasting powers of attorney and wills.

Advance decisions are all about the refusal of treatment. As mentally competent adults, we all have the right to refuse medical treatment, even if that refusal leads to injury or death. An advance decision allows us to plan ahead and set out a refusal of treatment to apply at a time when we may lack mental capacity to make the decision.

Some clients may still refer to advance decisions as 'living wills' or 'advance directives', and these documents, if prepared before the Mental Capacity Act 2005 came in to force, will need to be checked to make sure they are still valid. Since October 2007, the documents have officially been referred to as advance decisions, and the rules regarding their creation, validity and applicability are now contained in legislation.

In order to be valid, the maker must be at least 18; have mental capacity; the document must set out the circumstances in which the advance decision will operate; and the document must specify the treatment that is being refused.

In order to be applicabe, the advance decision must apply to the treatment under discussion; the circumstances in the document must be the same as the current circumstances; and there can't be 'reasonable grounds' for believing that there has been a change in circumstances, which, had the person making the advance decision known about at the time they signed the document, would have affected their decision.

Life sustaining treatment can only be refused if the advance decision is valid, applicable and, in writing; signed by the maker (or at his direction); it must be witnessed in the presence of the maker; and be verified by a statement that it is to apply even if the maker's life is at risk.

It is the last point that may mean older living wills need to be reviewed and amended, as it's likely that they won't contain a statement confirming that they should apply even if life is at risk.

The effect of a valid and applicable advance decision is that a healthcare professional can withdraw or not give the specified treatment without liability. It needs to be made clear to clients that this is not the same as asking for an active step to be taken to help someone end their life. Despite the way in which advance decisions are sometimes presented in the press, they are not an attempt to get assisted suicide legalised.

Now, seeing as there is no prescribed form for an advance decision, what should be included in it?

The Code of Practice contains a suggested list of contents (paragraph 9.19) and this is a good place to start, although the detail in any advance decision will be determined by the particular views of the client. My precedent contains a statement confirming that "the refusals of treatment set out in this document are to apply even if my life is at risk or may be shortened as a result"; details of what type of treatment is being refused, for example, life support systems, artificial ventilation, artificial feeding - enteral or parenteral (tube feeding into the stomach or into a vein), invasive surgery, dialysis (using a kidney machine) or blood transfusion; a statement confirming consent to treatment to alleviate pain or distress; space for the maker and an independent witness to sign; space for the GP's details to be included; and a schedule containing statements about certain conditions, for example dementia, paralysis or cancer and how the maker feels their quality of life may be affected in those circumstances.

This schedule can assist the client in thinking about what may happen to them in the future, and any treatments that they might then want to refuse.

Of course, having a valid and applicable advance decision is only
going to be useful if it is known about.
I therefore recommend that clients lodge copies with their GP and immediate family members, as well as a notice card for clients to carry in their purse or wallet, which sets out who holds copies of the advance decision.

Sofia Tayton is a partner and head of care and capacity at Lodders Solicitors

She writes the regular in-practice article on care and capacity for Private Client Adviser