What advance care planning actually involves, and why to do it early

The situation advance care planning exists to prevent is specific and common. A person becomes acutely unwell and cannot communicate. Decisions have to be made quickly. The family is asked what they would have wanted, and has no idea — so they choose based on their own fear, guilt and disagreement with each other, under time pressure, in a corridor.

Studies of surrogate decision-makers consistently find high rates of distress, and substantial rates of inaccuracy when their choices are compared with what the patient actually wanted. The problem is not that families choose badly. It is that they are being asked a question nobody prepared them for.

The components

Terminology varies enormously by country, which is itself a source of confusion. Broadly there are three things.

A statement of wishes and preferences. Not usually legally binding, but often the most useful document. What matters to you, what you would find unacceptable, where you would prefer to be cared for, what you would want the people making decisions to know. This is where the substance lives.

An advance decision to refuse treatment — called a living will in some jurisdictions, an advance directive in others. This is legally binding in many places when properly made, and refuses specific treatments in specific circumstances. It can only refuse; it cannot demand treatment a clinician does not consider appropriate.

Appointing a decision-maker — lasting or durable power of attorney for health and welfare, a healthcare proxy, an enduring guardian. This names a person to decide on your behalf if you cannot. In many systems this is the most powerful single step, because a person can respond to circumstances a document did not anticipate.

Why early is different from later

The obvious reason is capacity: these documents can only be made while the person can understand and weigh the decision. Dementia in particular has an unpredictable trajectory, and the window can close sooner than anyone expects.

The less obvious reason is that a conversation held in good health is a different conversation. Discussions initiated after a serious diagnosis carry an implication — that death is being anticipated — that makes people defensive. The same conversation at seventy, over a kitchen table, is abstract enough to be honest.

What to actually discuss

The documents ask about treatments. The useful conversation is about values, because no document can anticipate every scenario and a decision-maker who understands what you care about can extrapolate.

Questions that produce useful answers:

• What makes life worth living for you? What would have to be lost for that to change?
• Are there states you would find unacceptable — being unable to recognise family, permanent tube feeding, being unable to communicate?
• If you were seriously ill, would you want everything possible done to extend life, or would comfort take priority at some point? Where is that point?
• Where would you prefer to be cared for, and where would you prefer to die, if there were a choice?
• Who do you want making decisions — and, just as importantly, who do you not?
• What should the person deciding know about how you would weigh things?

That last question is the most useful one in the list, and the one most often skipped.

Resuscitation, which is badly understood

Public understanding of cardiopulmonary resuscitation is shaped substantially by television, where survival rates are depicted at around 70 per cent. Real survival to hospital discharge after in-hospital cardiac arrest is far lower, and in frail older adults with multiple conditions it is very low indeed, with a meaningful proportion of survivors having significant neurological injury.

A DNACPR decision refers only to cardiopulmonary resuscitation. It does not mean withdrawal of other treatment, and this is very commonly misunderstood by patients and families — and occasionally communicated badly by clinicians. Antibiotics, fluids, oxygen, surgery and admission to hospital all continue to be considered on their merits.

Making it stick

A document nobody can find is worthless. Give copies to your named decision-maker, your GP, and anyone likely to be involved. Ask that it be recorded in your medical record — many systems have specific flags for this. Keep a copy somewhere accessible at home rather than in a bank vault.

Review it every few years and after any significant change in health, because preferences shift with circumstances. People frequently find that what seemed unacceptable in the abstract becomes tolerable in reality, a phenomenon well documented in the literature on disability and quality of life.

Starting the conversation

Most families find this hard to raise. Two openings that work reasonably well: doing your own first, and telling them about it — "I've written down what I'd want, and I want you to know" reverses the direction and removes the implication that you think they are dying. Or using someone else's situation as a prompt: "when Margaret was ill, nobody knew what she wanted, and I don't want that for us."

The conversation, done once, properly, removes an enormous burden from people who will otherwise carry it. That is the actual purpose. The paperwork is secondary.