Your choices matter: The ABC’s of advanced care planning

When it comes to planning for the future, ensuring your end-of-life decisions are heard is often overlooked, leaving too few of us without a voice when it matters most.

According to research conducted by Advance Care Planning Australia and Palliative Care Australia, despite 80 per cent of Australians considering end-of-life planning essential, only 14 per cent have gotten their wishes documented.

In honour of National Advanced Care Planning week, there’s no better time than now to start the conversation on planning for your future.

Advance care planning goes beyond just putting a plan in place. It involves reflecting on what living well means to you, who you want to make decisions on your behalf if you can’t, and what they would say.

It’s an opportunity for everyone to share their healthcare preferences in advance.

Why should I make an advanced care plan?

Life can change in an instant and it’s never too early to create a plan.

While you still have decision-making capacity, it’s crucial to talk to those closest to you and document an advance care directive.

To avoid a situation in which you’re unable to communicate your wants, it’s important to ask the hard questions like, “Who would I want to make my decisions if I was unable to do so? And what would I want them to say?”

Dementia Australia Dementia Advocate and a retired nurse living with Lewy Body Dementia, Ann Pietsch, said her diagnosis pushed her to make the decision to plan for her future by discussing her healthcare preferences with her husband, Timothy, and creating an advance care directive.

“After I was diagnosed at 59 years of age, I appointed my husband as my substitute decision-maker,” Ann said.

“Should the time come when I cannot make my own decisions, I know he will uphold my rights and values.

“I feel it is empowering to have a directive detailing what is important to me. I love my pets, fine music and being out in the garden. I want to stay home as long as practical. I would like visits from the church pastor, and I do not want to play bingo. I have covered how I want to be cared for. I don’t want extreme measures if I am very ill, and I don’t want tube feeding.

“My family will feel empowered to ensure I will be cared for as I wish as my advance care directive will go with me if I go into hospital or into care.

“I know it can be a shock after diagnosis of a condition like dementia but it is so important to get an advance care directive in place with tangible examples of what you do and don’t want.”

Advance Care Planning Australia Program Director, Xanthe Sansome, said ensuring you have an advanced care plan in place not only looks after your wishes in the end but also guarantees your loved one’s peace of mind as well. 

“Losing someone we love dearly is incredibly sad,” Sansome said.

“We wish we could stop them dying, but unfortunately, we can’t.

“Being able to honour their preferences for medical treatments, care or comfort is a deep privilege and makes the experience of dying uniquely personal for our loved ones.

“It encourages me to talk more to those I love so they are not left having to make a difficult decision in the dark during one of the worst moments in their lives.”

How do I make my wishes legally known?

To begin creating your advance care plan, consider what quality of life means to you and discuss it with your healthcare providers, family, or friends.

Once you’ve decided on your preferences and picked a substitute decision maker that you can trust to carry out your wishes, ask your GP to sign your advance care directive and upload it to My Health Record for accessibility when needed.

Be sure to share copies with your substitute decision-maker, friends, family, doctors, and caregivers to ensure everyone is aware of your choices.

Undertaking advance care planning while in good health and while you’re able to communicate your preferences clearly is crucial, as losing the capacity to do so due to conditions such as dementia can potentially render an advance care directive invalid. So planning early is important.

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.