4 things to think about before starting your Advance Care Plan

You wouldn't go on holiday without booking your accommodation and arranging your transport. This journey, instead of being through the world to a particular place, is through time: your own lifetime from today, through your future life, to the end of it.

Palliative Care Physician and member of Violet's Clinical Committee, Dr Kathryn Mannix, shares 4 important things to think about ahead of starting an Advance Care Plan.

4 things to think about before starting your Advance Care Plan

You wouldn't go on holiday without booking your accommodation and arranging your transport. This journey, instead of being through the world to a particular place, is through time: your own lifetime from today, through your future life, to the end of it.

Palliative Care Physician and member of Violet's Clinical Committee, Dr Kathryn Mannix, shares 4 important things to think about ahead of starting an Advance Care Plan.

Advance Care Planning (ACP) is really just planning ahead. You wouldn't go on holiday without booking your accommodation and arranging your transport. This journey, instead of being through the world to a particular place, is through time: your own lifetime from today, through your future life, to the end of it.

Most of us won't die suddenly. We'll develop an illness or a long-term health condition (or more than one, especially if we live long enough) and our health will gradually deteriorate. Most of us will manage that process surprisingly well: we'll find new ways to do things we enjoy, we'll take different pleasures, and life will still feel sweet even if it's more limited than it used to be. We humans are very resilient.

But as time goes by, and our health gets more challenged, we may not feel well enough to make decisions about medical treatments, or whether to remain in our own home, or what kind of care to opt for. This is why planning ahead is so important.

Completing an ACP doesn’t have to be daunting - especially if you spend some time thinking about the key choices that could be ahead of you. 

Consider who would act on your behalf

Your Attorney can accept care options on your behalf, or turn down medical treatment that is offered to you, in exactly the same way we all can when we can speak for ourselves. We have the right to refuse antibiotics, for example, if the doctor offers them for an infection. So it's clear that if you nominate an Attorney or several, they need to understand how you would approach those important decisions to act faithfully for you.

What they (and you) can't do is demand a treatment that won't work, like antibiotics for a viral sore throat (antibiotics don't kill viruses). So our medical contract with our advisers is that they help us to stay as well as possible, make diagnoses when we become unwell, and advise about options for treatment that we have the right to accept or to decline. Our Attorney gets to decline on our behalf if we are too unwell to make that decision - provided we have an Attorney, and provided we have told them what we would want them to say in the future.

Define what’s important to you

Advance Care Planning is the process of thinking ahead, and starting to make people aware of the way you would want those decisions to be made. It's hard to make a list of every possible event and the decisions. So instead we tell people what matters the most to us: what's really important? Then, when a decision needs to be made, if we're not well enough to make the decision, our Attorneys, or our beloveds who will be consulted by the professional who has to reach a decision, can tell them what matters most to us. The medical decision then becomes the option that matches best with our personal values.

For example, let's imagine a person who has been living with a long-term health condition for many years, they are weary, not sure how much longer they will relish living. They may think that having the very best quality of life they can have matters more to them than living another decade. Quality, rather than length of life, is their priority. Let's call them Sam.

Let's imagine another person who had exactly the same circumstances up until now, but who last week heard that their first grandchild is due to be born in 6 months time. They are desperate to meet that baby! Last week, they would have said quality of life was their priority: this week, living to meet the baby is more important. Let's call them Lou. 

Of course, we all have lots of priorities, so maybe these two imaginary people have priorities that include seeing their family often, being well enough to read their newspaper or listen to a favourite radio programme. If they had a sudden medical event next week, and there were options for life-sustaining treatment using a ventilator in an Intensive Care Unit (ICU) with a 50-50 chance that they would survive and an 80-20 chance that they wouldn't be well enough to live their current lifestyle any more, then their doctors would want to know whether Sam and Lou would accept that ventilator offer.

Can you see where this is going? Neither Sam nor Lou has ever had a discussion with their loved ones about ventilators. But they have been very clear about their priorities. 

Consider your existing health conditions

To plan ahead, we need good information about our health and our health risks. If we already have a condition that might, eventually, be life-limiting, then we need honest information about what we might need to plan for. It may be about gradual loss of mobility; changes in eyesight or hearing; memory and thinking loss; breathlessness; risk of heart attack or stroke. By knowing our own risks we can have clear discussions with our families/trusted others about how we think we would respond to future health problems.

Make space for the process to continue

What matters most to us can change over time, and almost certainly will. This means that planning ahead isn't an event, it's a process. It's a conversation to begin, put aside, pick up again, review, and that process can and should continue for the rest of our lives.

Resources

Advance Care Planning Australia 
My Values 
With The End in Mind by Dr Kathryn Mannix 

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