Stephanie Wood spent 12 days nursing her unconscious father in a hospital 'dying room' on Queensland's Sunshine Coast, an experience that underscored the critical importance of advance care directives. Her father had signed a legally binding advance health directive (AHD) after his prostate cancer diagnosis in 2005, specifying he wanted no life-sustaining treatments such as CPR, ventilation, or artificial nutrition. This clarity spared the family from agonizing disputes, but most Australians lack such certainty.
Low Uptake of Advance Care Planning
According to a 2025 study by Advance Care Planning Australia, only 33% of Australians have undertaken some form of advance planning, and just 6% have formally completed an advance care directive (ACD). Without a legally binding document, dying patients may receive interventionist treatments they would never have wanted, while families face conflicts over care decisions.
Associate Professor Davinia Seah, head of palliative medicine at St Vincent's Hospital in Sydney, frequently witnesses family disagreements. 'We've had situations where one daughter will say, "Mum really wanted to be comfortable, let's just dose her up on morphine" and the other family member will say, "No, I want everything done, they need to be in ICU, they need to be intubated," ' Seah says. 'It's very hard to know which family member you should be listening to because there's no documentation.'
The Consequences of No Directive
Seah notes that people's manner of death often reflects how they lived: 'If your family has been arguing for many years, unfortunately that's probably going to manifest itself in someone's death as well.' Queensland's AHD form even includes space to note individuals who should not be involved in discussions.
When there is neither documentation nor a legally appointed enduring guardian, doctors face uncertainty. Seah describes a current patient with mild cognitive impairment: 'A range of neighbours have been really supportive but no one has actually been appointed to make decisions, so we've got to figure out, "Are these neighbours trustworthy, are they really thinking of this patient's best interests?" That's a tricky situation to be in.'
Even when a directive exists, accessing it can be problematic. Seah recalls an 87-year-old patient with an ACD, but 'when I asked where it was she said it was with her solicitors. Do you know how hard it is to get that paperwork?!'
A Doctor's Personal Struggle
One doctor who requested anonymity shared her own efforts to help her parents finalize directives. 'Mum is fiercely independent and would rather die than have someone help her shower, for example, but she is still resistant to talking about what might eventually happen,' the doctor says. 'I have too often watched older people die in hospitals or be maimed by well-meaning CPR/life-sustaining measures when their wishes are not set out formally.'
John Groves: A Case Study
John Groves, a retiree from Port Macquarie, New South Wales, completed an ACD after multiple near-death experiences over the past year. He developed cardiomyopathy about 15 years ago, and by late 2024 his condition deteriorated rapidly. In September, he collapsed at his cardiologist's office, was resuscitated, intubated, and airlifted to St Vincent's Hospital in Sydney. There, he received a mechanical heart pump but later developed a liver infection.
A palliative care specialist suggested an ACD. 'She would come in and have the discussion with us and then after a couple of visits, she'd leave some paperwork for us to have a look at,' Groves says. His directive reflects concern for his wife, Dawn: 'I was in hospital for four months! I've had a million needles and a million tests. It's a lot. And it's not just a lot for me, it's a lot for Dawn.' He points to his heart pump: 'If this thing fails, just let me go.'
Groves' ACD specifies he wants to be cared for at home if possible, to be kept pain-free, and accepts resuscitation/CPR but not renal dialysis or life-prolonging drugs. He also requests cremation and organ donation, noting, 'I said they could have whatever bits and pieces they wanted but I said to the doctor, "I don't know what you're going to want because nothing's any good any more!" '
Values and Quality of Life
ACDs allow space to outline values relevant at end of life. NSW guidelines suggest stipulating preferences like flowers in the room, time in the garden, or favorite music. Seah has seen directives stating, 'If I can't eat chocolate, I can't wipe my bottom, I can't play golf, life's not worth living … there's no point in trying to prolong it.'
Wood reflects on what made her father's life worth living: enjoying food, walking to buy a newspaper, reading to grandchildren. In his last weeks, none of that was possible. A friend without children or a spouse advised, 'When you don't have children, when you don't have a spouse, you really need to get it sorted out.'
Wood concludes by finding an ACD form on the NSW Health website and hitting print, urging others to do the same.
