Australian Carers Guide to Planning Ahead

Sisters Heather and Sue have just participated in a new Advance Care Planning Australia video, ‘The Questions that Matter Most’. In the video, they explore the big questions as they share their heartbreaking experiences supporting their mum and dad through the most challenging times.
Sue and Heather did their best to support their dad as he struggled to decide whether they should accept life-prolonging treatments for their mum who had sadly deteriorated with dementia and could no longer make her own decisions.

“Mum and Dad had not discussed end-of-life care in any shape or form. So when the doctor said to him, ‘there’s nothing else we can do for your wife,’ I literally saw his heart break in that moment because he had no idea that was coming,” Heather said.

Dad “took a while to process that and to make any decisions and he found it extremely hard to make any decision based on end-of-life care. They had nothing in place. They had not discussed that between the two of them.”

Sue added, “Even though Mum was going through dementia, we didn’t expect the end-of-life to come so quickly. To discuss it beforehand and have that plan in place would’ve been so much easier.”

Heather explained just how hard it was. “Dad had to make those decisions about the person he’d loved for almost sixty years. And the doctors were saying, well, we need an answer now.:”

“After Mum died, I think he thought, ‘I don’t want the kids to go through that’. So he did an advance care directive and discussed it with all of us. As we found out in the end, it made things a lot more straightforward for all of us. He didn’t want us to have to make those decisions and go through that guilt and regret.”

After Heather and Sue’s dad was diagnosed with terminal cancer and later had a heart attack, the sisters and their extended family cared for him. He became confused in hospital towards the end. As Sue said, “He wasn’t in the state of mind to be able to make decisions for himself” but fortunately, he already had his advance care directive in place.

Their dad’s advance care directive documented his values and preferences clearly so the family were able to make choices that reflected his wishes. Sue explained, “To be able to confidently make those decisions and have some information behind those decisions made a huge difference”.

Heather added, “Dad said, ‘I don’t want any heroic efforts’…We could just make sure that he was settled… We then got to spend three days and nights, 24 hours a day with him holding his hand, telling him we loved him.”

Ask the person you care for the questions that matter most during National Advance Care Planning Week, and develop your advance care directives together. Help your loved one make their future treatment their choice – now and always.

Remember advance care planning is not only about dying. It gives us the opportunity to think about, discuss and record our preferences for the type of care we would like to receive and the outcomes we would consider acceptable.

It’s a powerful statement about who we are, how we want to live and what we value most about living. It’s also one of the most important gifts we can offer our family, carers and loved ones who might otherwise be left to make difficult decisions.

See Heather and Sue’s story along with other families’ stories in the new ‘Questions that Matter Most’ video. Visit to access a free email starter pack and other information.

You can also find face to face and online awareness raising events Australia-wide during National Advance Care Planning Week.

For free, personalised advice, call the National Advance Care Planning Support Service on

1300 208 582
from 9am – 5pm (AEST) Monday to Friday

Advance Care Planning Australia is funded by the Australian Government and administered by Austin Health.