Mar 20, 2023

Families need to stop avoiding the questions that matter regarding a loved one’s care

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Families know so much about their loved ones. Yet often families avoid important conversations about their treatment preferences for the future – even as they age.

If you were too unwell to speak for yourself, who would speak for you and what would they say?

Research shows that over 50 per cent of people will be unable to make their own decisions about their health care at the end of their lives. We don’t know when we may get critically ill and lose the ability to make complex decisions for ourselves, nor when we will die. We want to live life to its fullest but also plan for ‘what if’ situations.

Advance care planning offers us the opportunity to discuss our preferences early, preparing ourselves and our families for a time when we can’t make, or communicate, our own decisions.

With National Advance Care Planning Week (20 – 26 March) currently upon us, there is no better time to ensure plans are in place for your healthcare and for those you love.

‘The Questions that Matter Most’  

Sisters Heather and Sue shared their family’s story through an 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 parents 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 have 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, it made things a lot more straightforward for 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.”  

The time is now to ask these questions

Could you make similar life and death decisions for those you love? Would you know what decisions they would want you to make?

Ask your loved ones the questions that matter most during National Advance Care Planning Week, and develop your advance care directives together. Appoint a substitute decision-maker to be your voice if you can’t speak for yourself. Make your future treatment your choice – now and always.  

Ask your GP to sign your advance care directive. Check if they can upload advance care planning documents to My Health Record or upload yourself. If your documents are on My Health Record, they can be accessed when they’re needed most wherever you are – at home or travelling. Share copies with your chosen substitute decision-maker, family, carers, local hospital and other health providers.

Visit advancecareplanning.org.au to access a free email starter pack, and resources in 18 languages. You can also find events and online webinars available Australia-wide during National Advance Care Planning Week at acpweek.org.au

For free, personalised advice, to make a referral or request a printed starter pack, call the National Advance Care Planning Support ServiceTM on 1300 208 582 from 9am-5pm (AEST/AEDT) Monday to Friday. 

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

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