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When the beloved broadcaster and saxophonist James Valentine passed away this week it was on his terms – he was at home, surrounded by his family, after making the choice to use voluntary assisted dying (VAD).

“Throughout his illness, James did it his way, which lasted all the way until the end,” his wife, Joanne, and two children, Ruby and Roy, said in a statement.

“Both he and his family are grateful he was given the option to go out on his own terms.”

As tributes flow in for Valentine, advocates for VAD hope his loss will encourage the federal government to address structural barriers to accessing the end-of-life care that are preventing some Australians from doing the same.

Every Australian jurisdiction excluding the Northern Territory has legalised VAD, which represents about 2% of all deaths, or 5% of cancer deaths. The NT government has committed to draft and debate a VAD law, with no timetable in place.

But while VAD applications rose by 41% in 2024-2025 compared with the previous reporting period, four in 10 patients who started the process did not complete it.

Dr Linda Swan, the chief executive of Go Gentle Australia, a charity that advocates for VAD, said people were “dying waiting to get access to assisted dying” because they couldn’t overcome the regulatory barriers in time.

“Stories like James’s are incredibly powerful at helping the general community in Australia understand that voluntary assisted dying is a legal choice,” she said.

“He’s been a long-term supporter of voluntary assisted dying … So he was in a very fortunate position of being well informed. Some people aren’t. And what can happen is that they don’t understand that it’s quite a long process and they apply too late.

“They can actually be denied access just because it takes too long to get through the process.”

Swan said part of the difficulty of starting the process too late was that in some instances, “it’s just too complicated” to navigate.

Typically, applicants (who must be terminally ill) undergo a process between two and five weeks, which includes being assessed by at least two independent doctors and submitting three separate requests, demonstrating decision-making capacity throughout.

Swan pointed to the fact that Australia remains the only nation in the world with commonwealth legislation preventing patients from using telehealth during the VAD process as a huge regulatory barrier. VAD also isn’t included as an option within high-quality end-of-life care clinical standards and guidelines.

“It is so frustrating that we are struggling with this [telehealth] barrier when common sense says these are exactly the people that you should be helping to access care,” Swan said.

“There is absolutely concern about what happens in rural and remote areas that are so dependent on telehealth, but even for somebody who lives 20 minutes from their doctor, if you’re in a state of dying and suffering then you’re not highly mobile.

“It’s just a horrendous process to ask people to go through when they could safely access that care using telehealth.”

The attorney general, Michelle Rowland, said VAD was a “very sensitive and personal issue” and sent her “deepest condolences” to Valentine’s circle.

“The Albanese Government understands there are a range of complex issues arising out of the interaction between Commonwealth legislation and state and territory VAD schemes,” she said. “The Minister for Health and I continue to consider these issues in consultation with the states and territories.”

Swan said although VAD still represented a small percentage of Australian deaths, it was expected to double to about 5% over the next decade, which would require a boost in resourcing, training and awareness.

Since 2019, 14,686 terminally ill people have sought access to VAD, and of those, 7,082 have died using a VAD substance. There were 3,329 VAD deaths in 2024-2025, a 48% increase on the previous year.

A Go Gentle report released this month found services were reaching an “inflection point” where demand would soon exceed their capacity to deliver.

It pointed to “process complexity, difficulties finding trained practitioners limits on open conversations and … obstruction of VAD choice”, including faith-based aged care homes and hospitals refusing to facilitate access to care.

One in three respondents to the 2025 Australian VAD survey said it had not been easy to find a doctor to support their VAD request.

The president of Voluntary Assisted Dying Australia and New Zealand, Dr Andrea Bendrups, said jurisdictions were delivering “high-quality end-of-life care” but the system was under strain and could not “rely indefinitely on the goodwill of practitioners”.

“Without adequate remuneration, the system risks collapsing under the weight of unpaid labour and practitioner burnout,” she said.

Speaking with ABC Radio Sydney, Roy Valentine said his father’s cancer diagnosis had been a “heavy time period” but also one of “pure joy with him and love”, in part because they were able to spend so much time with him and plan his final moments.

Valentine intended it to be publicised that he had chosen VAD, which his daughter, Ruby, told the public broadcaster had been “really important” to him.

“We were all able to be together. It was really beautiful,” she said.

“He wanted it to be something people knew that he did. That he could lend his voice to the argument of why this is such a necessary thing for so many people. It was really important to him that we mentioned that.

“In his final moments, he was still concerned about making a difference.”