Advance decisions (living wills)

An advance decision to refuse treatment — the older name is a living will — records medical treatment you would not want, in circumstances you define, for a time when you can no longer say so yourself.

It is not a statement of preferences. Where it is valid and applies to the situation that has actually arisen, it is legally binding on the clinicians treating you, in exactly the same way as if you had refused that treatment in person.

What it can and can’t do

It can refuse specific treatment. Named treatments, in circumstances you describe. That’s the whole of its legal force, and the precision is the point: “I wouldn’t want to be kept going on machines” is a sentiment, not a decision anyone can act on.

It cannot demand treatment. No document can require a clinician to provide treatment they don’t consider clinically appropriate.

It cannot refuse basic care. Warmth, cleanliness, and the offer of food and drink by mouth are not treatment and cannot be refused in advance.

It cannot ask for anything unlawful. An advance decision has nothing to do with assisted dying and cannot be used to request it.

For everything outside those limits — where you’d like to be cared for, who you’d want present, what matters to you — the right vehicle is a statement of wishes accompanying the decision. It guides without binding, which is the correct treatment for matters of judgement.

The formalities, which are where these usually fail

An advance decision refusing treatment that isn’t life-sustaining doesn’t have to be in writing at all, though it plainly should be.

An advance decision refusing life-sustaining treatment must be:

• in writing;
• signed by you, or by somebody else at your direction and in your presence;
• signed by a witness in your presence; and
• expressly stated to apply even if your life is at risk.

All four. That final statement is the one people writing their own leave out, and without it the refusal simply doesn’t operate at the moment it was written for.

Beyond validity there’s applicability, which is where careless drafting does its damage. An advance decision doesn’t apply if the treatment or the circumstances aren’t the ones described, or if there are reasonable grounds to believe circumstances have arisen that you didn’t anticipate and that would have affected your decision. A document that is vague about which treatments and which circumstances invites exactly that argument, at exactly the moment nobody has time for it.

Where my job starts and stops

I draft the document, I make sure it meets every formality, I arrange the witnessing, and I make sure it says clearly what you have decided so that a clinician reading it under pressure can act on it.

What I don’t do is tell you which treatments to refuse. That is a medical question and it belongs with you and your doctor — and for most people the conversation with the GP should come first, so that what you’re refusing is grounded in your actual health and what is realistically likely.

I’ll also make sure it doesn’t collide with your other documents. If you have, or are thinking about, a health and welfare LPA, the order in which the two are made determines which one wins on any treatment they both cover. That interaction is genuinely important, almost never explained, and something I’ll go through with you before either is signed.

Afterwards

The document only works if it can be found. I’ll give you a copy for your GP so it goes on your medical record, copies for your attorneys and family, and a note of where the original is kept.

Review it every few years, or whenever your health changes materially. An advance decision written when you were well and healthy may read very differently once you’re living with a specific condition — and you can withdraw or change it at any time while you have capacity, with no formality at all.