Australians encouraged to have conversations about end-of-life care as new online tool launched

Friday 17 OctoberFri 17 Oct 2025 at 9:08pm

Bonnie Jantke looks down as she plays piano. — Bonnie Jantke approached the conversation around care in her final stage of life with pragmatism. (ABC News: Stuart Carnegie)

In short:

Bonnie Jantke's husband was reluctant to discuss end-of-life care after his cancer diagnosis, but she says she embraced the conversation.

Advocates and doctors say it is valuable to discuss the subject early, to avoid stress during illness and before death.

The charity Violet has created an online tool to help families begin the conversation about care in the final stages of life.

Many people struggle to approach the subject of death with family, and what kind of care they want to receive in their final months or years.

But for 89-year-old Bonnie Jantke, there was no hesitation.

"Well, if I didn't, who was? Somebody had to," she said.

It was different for her husband of 66 years, Keith Jantke, which caused problems for his family.

"He never planned for the future. Never. It wasn't important,"

Mrs Jantke said.

A photo of a photo of an older man with grey hair, smiling at the camera. — Keith Jantke died two years ago after being diagnosed with prostate cancer. (Supplied)

When Mr Jantke was given paperwork to fill out after his aggressive prostate cancer diagnosis, he ignored it.

"He knew what was happening, but he didn't really want to admit it,"

Mrs Jantke said.

"He didn't like being fussed over, medically. He used to cancel a lot of doctor's appointments."

This reluctance caused frustration of his daughter, Leanne Newick.

"As far as an advanced care directive and power of attorney, he didn't have a bar of it," Ms Newick said.

"So the catalyst was coming into residential care because it was one of the requirements for him to have, but it wasn't an easy discussion."

An older woman sits in a chair and her daughter sits on the arm of the chair, with her arm around her. They smile. — Leanne Newick and her mum Bonnie Jantke. (ABC News: Stuart Carnegie)

Mrs Jantke said towards the end, her husband "had to change, he wasn't well".

But the drawn-out experience taught Ms Newick a valuable lesson, and she has advice for others.

"Just have that conversation, it's not scary,"

she said.

"It's scarier to leave it to the end than it is to start talking about it now."

'Aggressive' care not always the best

Professor Imogen Mitchell has seen the fallout from a lack of planning many times through her work at Canberra Hospital.

An intensive care specialist, Professor Mitchell said families had a tendency not to talk about the subject of a care directive.

Imogen, a woman with short grey hair, smiles in the camera, wearing a stethoscope. — Professor Imogen Mitchell is an intensive care specialist at Canberra Hospital. (ABC News: Stuart Carnegie)

She said she was sometimes faced with the question: "Is this patient appropriate for intensive care or actually, is this something that's not going to be important to them?"

"The issue for me is that when I'm called to an emergency, and there is no decision, there is seemingly no conversation, I then have to rummage through the notes to find the next of kin to then ring them," she said.

She said that "9.9 times out of 10" a conversation has not been had between the individual and their loved ones about their wishes.

"It's the lack of conversation which means you have to have these terrible emergency conversations, sometimes in the middle of the night, which I don't think is good for the loved one and it's certainly not very good for the patients,"

she said.

She said that without a care directive, the choice had to sometimes be made between an "aggressive" form of treatment or a pathway that allowed "comfort care".

Elderly patient — Conversations in later life can be challenging, but are inevitably valuable, experts say. (Supplied: Rosie O'Beirne)

Aggressive forms of care, she said, were often not appropriate when the patient was already in their final days with a terminal condition.

"If you think about that final chapter, that last chapter can be so much better,"

she said.

A conversation had the advantage of making sure all members of the family were "on the same page", she said, which was not always the case.

New tool to start conversations

In a bid to address the challenge of creating a care directive, the charity Violet has created the Care Compass, an online tool that people can fill in and share with those closest to them.

It is designed to to help people have "meaningful conversations about future care with your loved ones" and takes just 15 minutes to complete.

Violet chief executive Melissa Reader said a care directive was not just about someone's death, but also the years that led up to it.

Melissa Reader in a black suit smiling — Melissa Reader is the chief executive of Violet, a non-profit charity that helps people plan for the final stage of life. (Supplied: Violet)

"It can be quite frightening, quite confronting for many, but we are trying to normalise this as a stage of life," she said.

She said the phrase they most often heard was: "I don't know where to start".

"And we can see that the current paper-based tools, despite best of intentions, they're a little frightening and technical for a lot of people and they feel a little 'once and done'," she said.

"So what we're really endeavouring to do here is to give people that place to start, but do it in a much more gentle and reassuring way."

Bonnie's hands play the piano. — Advocates say having conversations early can make way for a more enjoyable later life. (ABC News: Stuart Carnegie)

The Care Compass was designed to be non-binding, after it became clear that many people were intimidated by the more legally binding documents, and therefore didn't begin the conversation at all.