Why you're never too young for an advance care plan

With everyone is focused on health for themselves and their loved ones, it's time to talk about what we would like to happen when we can no longer make decisions.

This week - from March 23-27 - is Advance Care Planning week, when you are encouraged to speak to loved ones about your health decisions if you couldn't speak for yourself.

Advance care directives, or living wills, are usually directed towards older Australians and those going into aged care but these are relevant at any age.

They need to include the people you would like to act on your wishes, and guidance on the decisions you would like made.

To complete one, you must be able to make decisions and sign it with a witness and a medical professional who can explain the implications of your directive.

Bina Brown, director of Aged Care Matters, says she is most often called to assist with an advance care directive when someone is preparing to move into aged care.

"All aged care facilities now hand them out as part of their welcome pack and then it's up to people to fill them out and return them," Brown says.

It's not always something people do right away; one woman told Brown she took two years to complete her mother's directive.

"Decisions can be complex, for example, do you want to be resuscitated in any circumstance [such as] if you couldn't eat, or if you couldn't speak?" Brown says.

"Do you want CPR if it might result in survival but a lessened quality of life?"

The decisions you make at 50 might be different from those at 70 or 80, so the directive should be reviewed at regular intervals, like your will, suggests Brown.

Just 30% of Australians over 65 have them, according to data from Advance Care Planning, and only 15% of those aged between 18 and 65.

An advance care directive (known as an advance care plan in some states) is not a legally binding document but they are important as they provide direction for those left to make decisions.

Advance care directives and COVID-19

Respiratory specialist Dr Keren Detering, a spokesperson for Advanced Care Planning, says the coronavirus outbreak means advance care directives are particularly important.

"If someone has older parents, even if they are incredibly well, try to get them engaged while they're well and good," she says.

"And with COVID-19 conversations, they are those whose risk is highest. Ask them what they would like if things were not to go so well for them.

"Almost every day where I work I think, if only this person and their family had this conversation, and I see families trying to find out what their parent would want to do.

"It's so hard for them, one because they're grieving and then we're talking about what's the best choice out of three not optimal decisions."

According to Detering, there are three stages where people consider advance care directives.

"We encourage relatively well people to think about who their substitute decision maker might be and talk to them and potentially consider appointing them and giving them broad instructions," she says.

"At a second stage, people might start developing illness - heart disease, cancer, and at that point people will start offering a bit more information, on possible treatments and outcomes.

"And the third part is in that advanced stage of illness and that is when we might update planning again and it's more likely to be about preferences not to have certain treatments."

These decisions should be revisited on key birthdays, before a hospital stay, if their social situation changes or if they start to experience memory loss.

"One of my respiratory patients aged 65 had a lung condition which he'd had for a while and each time he came in he was a little worse.

"We did a little advance care directive, where he made his own decisions.

"He said if I reach a point where I'm really unwell and it looks like I won't be able to get back home. I want my family to call the ambulance and want to be brought to hospital but not have any treatment.

"That happened and he came to hospital and instead of treating him to save his life we kept him comfortable he had a peaceful death and essentially that meant he got what he wanted and his family was so grateful because they knew what he wanted to do."

Another example was a colleague of Detering who had discussed with her husband what his health wishes would be.

"He was 50, fit and well, and one day had a major heart attack. He had some treatment but it became clear he wasn't going to do well.

"She said, 'I'm his decision maker and he doesn't want this', and then they stopped his life support.

"That period could have gone on much longer, he may have survived in intolerable situation, his brain had been deprived of oxygen and it would have been incredibly difficult to say turn this ventilator off but she knew she was doing the right thing.

"In the moment when this happening, no matter how much planning people have done it's a wholly stressful decision."

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