A gag clause prohibiting physicians from initiating conversations about voluntary euthanasia with the terminally ill is one of many outdated legislative safeguards that should be abolished, say doctors and families pushing for a major reform of the landmark legislation ahead of a review.
Cherie Loncar and her two brothers Dave and Mick Goodman want Victoria’s assisted dying laws to be reformed after their father Daryl was locked out of the laws.Credit:Jason South
Doctors argue several of Victoria’s 68 safeguards are now obsolete. They are pushing to abolish residency requirements for the terminally ill, lobbying to decriminalise telehealth appointments on assisted dying and calling for a review of both the specialist doctor requirement and six-month terminal diagnosis safeguard.
The state government must hold a review into the fourth year of the law’s operation and has confirmed it will commence this year after June.
They also want federal law, preventing doctors from communicating about voluntary assisted dying via telehealth and modern technology overturned, describing as it as an “extraordinarily prohibitive” measure for people living with a disability and those dying in rural areas.
Many people had “beautiful and brilliant” stories about the life and death changing nature of Victoria’s 2019 euthanasia laws, said Dying with Dignity Victorian vice president Jane Morris, but for some others, particularly in rural and regional areas, “it has been a horrendous and heartbreaking experience”.
Daryl Goodman had wanted to die sitting in his favourite chair on his front veranda, where he had spent hours watching the world go by, his three children and rescue dog Mia, by his side.
The 72-year-old Geelong man had planned to wait until it was a warm day, so he could feel the sun on his face, as he swallowed a lethal medication that would kill him swiftly. He had wanted to place a photo of his beloved wife Gail, who died in 1994, next to him, so her smiling face was the last image he saw.
Cherie Loncar with her father Daryl.
Instead, Daryl, who was diagnosed with terminal prostate cancer, which spread to his bones, died in excruciating pain after becoming too ill to finish the final stage of his application for voluntary assisted dying.
Despite being given a terminal diagnosis, his daughter Cherie Loncar, said her father struggled for months to find an oncologist in Geelong, who had undertaken the mandatory training, and able to determine that Daryl had six months left to live.
“In the end, we were dragging Dad around from pillar to post to get things signed off, and he was so sick,” Loncar said. “It was just so cruel.”
Daryl was initially given a prognosis from an oncologist of two to five years in 2019, but he was dead within nine months.
“It was very, very obvious to us that he was dying, and it wasn’t far away,” Loncar said. “He wanted to be able to die peacefully and with dignity, but he was robbed of that.”
Daryl was adamant he wanted to use the state’s voluntary assisted dying laws to end his own life. But in the end, Daryl, who spent the final years of his life rescuing animals through the Geelong Animal Rescue, was no longer able to feed himself. His legs were swollen and covered in bed sores. For five days, his children kept a vigil at his bedside, taking turns to care for him through the night.
“If anyone needed help, Dad was always the first one there and the last one to leave,” Loncar said. “It breaks my heart we weren’t able to do that one last thing for him and give him the death he wanted.“
Victoria’s laws allow access to a lethal substance for terminally ill adults who have only about six months to live – or no longer than 12 months for those with a neurodegenerative diagnosis – and who meet other strict eligibility criteria such as being able to give informed consent.
But Loncar said the six-month rule should be lifted, arguing people who receive a terminal cancer diagnosis be permitted to start the process sooner.
“You can draw on your super fund when you get a terminal diagnosis because everybody accepts you’re dying,” Loncar said.
Melbourne oncologist Cameron McLaren, who has helped dozens of Victorians end their lives lawfully with a lethal substance, said Victoria must start looking at states, such as Queensland, which has implemented a 12-month terminal prognosis for cancer.
He said there was an argument to allow terminally ill people to undergo an assessment as soon as they are informed they are dying, with the proviso medication would be dispatched only when they have about six months to live.
“There are so many ways this could be addressed to stop people from having to go through this process when they are very frail and ill,” he said.
McLaren is also pushing for a law mandating patients must have lived in the state for at least a year, to be scrapped.
“Now that we’ve got every other state with legislation it’s not a safeguard anymore, it’s a barrier,” he said.
He said there had been several cases of terminally ill people locked out of the state’s voluntary assisted dying scheme and living out their final days in intolerable pain because they did have permeant residency, despite living in Victoria for decades.
McLaren said Queensland offered exemption applications for long-term residents who were not officially Australian citizens, something Victoria must consider.
Doctors also want a legal ban on Victorian doctors initiating conversations about voluntary euthanasia to be reviewed, which has previously been described as an “unprecedented, unwarranted infringement on communication” between health practitioners and their patient.
Queensland, NSW, WA and Tasmania have all passed their own assisted dying laws without the same gagging clause. South Australia is the only state to have copied the Victorian provision.
“Doctors should be able to initiate that conversation in the context of a broader discussion on care options,” McLaren said. “We should be able to inform patients of what their rights and options are. That’s just good medicine.”
Oncologist Cameron McLaren: “We should be able to inform patients of what their rights and options are. That’s just good medicine.”Credit:Justin McManus
The latest government figures show 1035 permits to die using prescribed lethal medication have been issued, and 604 people have died from taking the substance between June 19, 2019, and June 30 last year. With 68 safeguards, Victoria’s voluntary assisted dying act has been described as one of the most conservative in the world.
Access remains most problematic for the terminally ill in regional and rural areas, where there is a shortage of doctors who have undertaken the mandatory training. This has meant bedridden Victorians, who are in intolerable pain, are being forced to travel hours to Melbourne to visit specialist doctors.
There remains only one euthanasia accredited neurologist in rural Victoria.
Melbourne GP Nick Carr, who has helped 48 people lawfully obtain a permit to end their lives, is preparing to fight the Commonwealth law preventing doctors from communicating about voluntary assisted dying via telehealth in the federal court later this year.
Under the code, it is illegal for a person to discuss suicide through a carriage service, which includes phones, text messages, emails and telehealth services. Anyone caught breaking the communication laws can be fined up to $222,000.
Dr Nick Carr has helped 48 people lawfully obtain a permit to end their lives.Credit:Jason South
But Carr argued it was a “completely ridiculous interpretation” of the code.
“It is all based on, in my view, a misinterpretation of the wording of the Criminal Code act.”
Carr said he would argue in court assisted dying was not suicide, a consensus shared by many in the medical community. “Voluntary assisted dying is about giving patients who are already dying a choice about how they die,” he said.
Carr also wants the government to consider increasing funding or training a group of pharmacists in regional areas, who could dispatch the medication to rural Victorians.
He said pharmacists at The Alfred hospital in Melbourne, who mix and deliver the lethal doses across the state, were being overloaded, causing delays in getting lethal medication delivered to people in remote areas.
The St Kilda GP said incentives to encourage more doctors to consider undertake the mandatory training were also desperately needed, such as specific Medicare rebates. Carr provides his voluntary assisted dying services pro bono.
”Despite all the challenges overwhelming experience over the last almost five years is the look of relief and gratitude on people’s faces that this is an option in Victoria,” Carr said.
“When you’re there when these people die, it is genuinely beautiful. It’s gentle. It’s so peaceful, and it actually is a beautiful death.”
The terms of reference of the review are yet to released, but the government confirmed a range of safeguards will be examined.
A Victorian government spokesman said the government continued to advocate to the Commonwealth to amend the criminal code.
More than 600 medical practitioners have registered to complete voluntary assisted dying training, a third based in regional Victoria.
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