Professor Ken Hillman is one of Australia's most outspoken critics of unnecessary, invasive and often harmful treatments among elderly patients in their final months of life.
But when his own mother neared death, he became one of the many Australians clinging to medical intervention to keep their loved one alive.
"I couldn't bring logic into it," said the UNSW intensive care specialist.
"We got caught on the conveyor belt of treatment: a little bit here, and a little bit there."
"I wanted to do the best for my mother and trusted the system. It's full of well-meaning people," he said.
"But we're all programmed to cure and make people better not to stand back and ask 'what would they like?'."
After 22 hospital admissions over the last six months of his mother's life, her geriatrician intervened.
"He said 'your mother's dying and 'I had a chat to her and she doesn't want to come back [to hospital] again'," Professor Hillman said.
"It was an enormous relief for both us and my mother."
"It if happens to me it must be pretty universal," Professor Hillman said.
More than a third of elderly patients hospitalised at the end of their life received invasive and potentially harmful medical treatments, showed the largest international systematic review of the issue published on Monday.
"After two decades of talking about unbeneficial end-of-life treatments we're still doing it," said UNSW Dr Magnolia Cardona-Morrell, lead author on the study with Professor Hillman and their international counterparts.
The review of 38 studies from ten countries found widespread use of invasive treatments and tests including surgeries, chemotherapies, diagnostic imaging, transfusions, admissions to intensive care and in some cases CPR on patients with 'do-not-resuscitate' orders.
"We're talking about interventions that are not going to make any difference to the patient's survival but could cause pain and suffering.
"They aren't prolonging life, they're prolonging death," Dr Cardona-Morrell said.
Clinicians were torn between acting on their training to treat and respecting a patient's right to die and advances in medical technologies had fostered unrealistic expectations.
"Families put undue pressure on doctors, refusing to accept the fact that their loved one was naturally dying of old age, Dr Cardona-Morrell said.
In many cases family members push for every possible treatment simply because they don't know what their loved one would have wanted.
"Our research tells us that in the majority of cases elderly patients don't want these interventions," she said.
"It's incredibly important that people are having conversations with their families and their GPs about how they want to die," Dr Cardona-Morrell said.
"What do they think is unacceptable suffering or unacceptable quality of life? What treatments don't they want?" she said.
"These conversations aren't happening," she said.
The uptake of advanced care directives in Australia was so low that many intensive care specialists had never seen one, Dr Cardona-Morrell said.
"Some patients an advanced care directive is signing your death sentence. It's absolutely not.
"If you change your mind about certain treatments, or if new technologies come along, then you can make alterations," she said.
But advanced care plans alone could not combat chronic overtreatment.
Lyn Green's mother Agnes was prepared.
"She had already written her entire funeral service. She knew what was going to happen," Ms Green said.
But when Agnes caught pneumonia in hospital her treating doctor prescribed antibiotics, in defiance of her advanced care directive.
When her blood pressure dropped hospital staff intervened again.
"I thought, how can we stop this?" Ms Green said.
Days later Agnes was transferred to a nursing home. '
The once lucid, though frail, woman who fiercely protected her independence had become shrivelled, incontinent and "off her tree", Ms Green said.
"[The nursing home staff] had to get her up on a frame to take her into the shower where she has to lean on her frame and they hose her down.
"Now, where is the dignity in that?"
Two months later her blood pressure dropped again and she died peacefully in bed.
"Why did she have to go through all that? It was totally unnecessary," Ms Green said.
Some doctors may fear the legal repercussions of doing nothing if the advanced care directive is not legally binding, Dr Cardona-Morrell said.
"In other cases the patient's family can' accept the inevitable," she said.
There needed to be a fundamental cultural shift among the medical and wider community about how we treat people in their final months of life, Dr Cardona-Morrell said.
"We all need to start talking openly about what we want to happen to us when we are dying and respect those decisions," she said.
End-of-life planning checklist
- Have a frank conversation with your GP about your prognosis and treatment options
- Tell your family how you want to die: what do you deem unacceptable suffering? What is an unacceptable level of quality of life? What treatments would you refuse?
- Fill out an advanced care directive
- Take your advanced care directive with you if you are admitted to hospital.
- Nominate a strong advocate; a family member or friend who will ensure you advanced care directive is followed.
