Advance care planning

Also called Advance decision, Living will, ReSPECT, Advance statement

Saying now what you would want later, while you can. Four different documents, and only some of them are legally binding.

What it is

Deciding in advance what treatment and care you would want if you became too unwell to say, and writing it down so it counts.

Four things get muddled together, and the differences matter:

An **advance statement** records preferences and values: where you would want to be, what matters to you, your routines and beliefs. It is not legally binding but must be taken into account.

An **advance decision to refuse treatment** is legally binding in England and Wales. It refuses specific treatments in specific circumstances, and if it refuses life-sustaining treatment it must be written, signed and witnessed, and say that it applies even if life is at risk.

A **lasting power of attorney for health and welfare** appoints somebody to decide for you. It has to be registered with the Office of the Public Guardian, which takes weeks, and it does not work until it is.

A **ReSPECT form or DNACPR** is a clinical recommendation about emergency treatment, made with you rather than by you. A DNACPR refers only to cardiopulmonary resuscitation and to nothing else, which is the single most damaging misunderstanding in this whole area.

None of this shortens life or reduces care. What it does is stop somebody being given treatment they would have refused, and stop a family being asked to guess in a corridor at three in the morning.

Signs you might notice

Moments when this becomes urgent rather than sensible: a diagnosis of dementia or another condition that will affect capacity, a diagnosis of a life-limiting illness, repeated emergency admissions, increasing frailty, or somebody starting to say what they would and would not want.

A person with a progressive neurological condition such as motor neurone disease or Huntington's disease should be offered this early, while communication is easy.

Signs it has been done badly: a DNACPR nobody discussed, a form that cannot be found in an emergency, or paperwork that names treatments but nothing about the person.

How it can affect day-to-day life

A completed plan that nobody can find is the same as no plan. Ambulance crews and out-of-hours services need it in minutes, which means it has to be on the electronic record, not only in a drawer.

Blanket DNACPR decisions applied to groups of people, particularly people with a learning disability or in care homes, have been repeatedly found unlawful. Each decision must be about one person and discussed with them or with those close to them.

People change their minds, and are allowed to. A plan made three years ago should be revisited after any significant change.

Families who have had the conversation describe the same thing afterwards: it was much less frightening than expected, and it removed a burden rather than adding one.

Supporting someone well

Start earlier than feels necessary. Capacity has to be there when the document is made, not when it is used. See mental capacity.

Do the lasting power of attorney first, because registration takes weeks and the others do not.

Be specific about circumstances rather than about feelings. "I would not want ventilation if I could not recognise my family" is usable; "no heroics" is not.

Make sure the GP record carries it and that it is on any ReSPECT or emergency care summary. Ask for confirmation that it has been uploaded.

Check that a DNACPR has actually been discussed, and if not, challenge it. It is a conversation, not a form.

Give copies to the attorney, the family, the care service and the GP.

Review after any significant change, and know that a person may withdraw an advance decision at any time while they have capacity.

Where to get help

A GP practice, and the specialist nurse or palliative care team if there is one.

Compassion in Dying provide free forms and an information line, and are the clearest source on what is binding and what is not.

Marie Curie support line: 0800 090 2309.

Age UK for lasting power of attorney and practical help with the paperwork.