Starting the advance care planning conversation

Almost nobody puts off advance care planning because they have thought it through and decided against it. They put it off because the opening sentence is hard to find, and because it feels like a conversation you can safely have later.

Later usually turns out to be a hospital corridor at nine at night, with a doctor asking a daughter what her father would want and the daughter realising she has no idea.

This guide is about the conversation, not the paperwork. It is general information and not legal or medical advice, and the documents themselves are a job for a solicitor.

Why the conversation is the part that matters

The forms get the attention because forms are tangible. But a signed document that nobody has read, sitting in a drawer nobody knows about, does very little. What actually changes the outcome is that the people around you have heard you say, in your own words, what you care about.

Families who have had the conversation make decisions faster and fall out with each other less. Families who have not are left arguing about what he would have wanted, which is a question nobody can win, and which is really an argument about who knew him best. Our piece on when siblings disagree about care is about that argument in its everyday form.

Start before there is a reason to

The best time is a stretch when nothing is happening. No admission, no new diagnosis, no crisis. Raising it then is a planning conversation. Raising it the week after a stroke is a conversation about the stroke, whatever anyone intends, and everyone in the room hears it as a verdict.

If that window has already closed, start anyway. It is simply harder, not impossible.

How to open it

Do not call a family meeting. A summons raises the stakes before anyone has said anything, and it puts the person at the centre of a semicircle.

What works better is sideways and unhurried.

• Use someone else’s story. A friend’s hospital stay, something on the news, a neighbour whose family fought about it. “Did you ever think about what you’d want if that were you?” is a far easier question than one aimed straight at the person.
• Use a piece of paper that has arrived anyway. A hospital form, a GP asking about it, a renewal notice. Paperwork gives the conversation an innocent reason to exist.
• Go first. Say what you would want, and why. It turns the thing from an interrogation into an exchange, and it is much harder to refuse.
• Do it side by side. In the car, on a walk, drying up after dinner. Conversations that are hard to hold face to face are often easy to hold shoulder to shoulder.
• Let it stop. If it closes down, leave it. You are opening a subject, not finishing it. Most people come back to it themselves within a week or two, often with something they have clearly been thinking about.

What the first conversation needs to cover

Four things, and none of them require a decision on the day.

1. Who speaks for you. One person, named out loud. Not automatically the eldest, not automatically the nearest. The one who can hold a position under pressure in a room full of doctors, and who will actually say what you said rather than what they would choose.
2. What a good day looks like to you. This is the part people skip and it is the most useful. Living alone. Being at home. Recognising your grandchildren. Not being in pain. Being able to get to the mosque, or the garden, or the bowls club. Doctors can work with that. They cannot work with “do everything”.
3. What you would not want. Said plainly, in your own words, without medical vocabulary.
4. Where it will be written down, and who gets a copy.

Then write it down, and hand it out

An unshared plan is close to no plan. Copies should go to the person you have named, your GP, anyone else who might be called, and the hospital you would most likely be taken to. Keep the original with the rest of the papers that matter, which our documents worth sorting list covers.

The names of the legal documents, and who may witness them, differ in every state and territory, so use a national source rather than a form found online. The Australian Government funds the National Advance Care Planning Support Service at advancecareplanning.org.au, and the Department of Health publishes on it at health.gov.au. Take what you have agreed to a solicitor to put into effect.

Where a care provider fits

Not as a decision-maker. A provider’s job here is narrower and quite practical: to know that a plan exists, to know who the named person is, and to make sure both of those facts leave the house with you when an ambulance does.

At Aldera that sits in the One Story record, so it is not held in one worker’s memory or in a note on a fridge that nobody thinks to grab. Your Care Lead knows who to ring, and so does everyone in the Care Circle. If the conversation has turned toward comfort and quality of life, palliative care at home covers what support at that stage actually looks like.

The conversation is worth having on an ordinary afternoon, over an ordinary cup of tea, years before anyone needs it. That is the whole point of it.