Alan Clark finally got approved for Victoria's voluntary assisted dying scheme after spending months trying to access it.
But the terminally-ill man died a day before he was scheduled to end his life.
"By the time all the approvals went through, it was too late," his wife Zenda Clark said.
"The choice was taken out of his hands."
Mr Clark was diagnosed with progressive supranuclear palsy in 2020, which would slowly degrade his ability to use his muscles, and eventually kill him.
Frightened by this prospect, Mr Clark started the journey to get approved for voluntary assisted dying in January this year.
But he could not find a neurologist to declare he would definitively die within 12 months, as required under the law.
To complicate things, Mr Clark had to see his doctors in person due to a federal law criminalising the discussion of assisted dying via telehealth.
This was difficult, as he lived in Warragul in south-east Victoria, more than an hour's drive from Melbourne, and his declining health was making travel harder.
Mr Clark told ABC Radio Melbourne in August he wanted access to voluntary assisted dying as soon as he could.
"I don't want to take my life today," he told Virginia Trioli.
"I would rather be here and have the option at some time when I'm really at the end of my life or suspect I am."
'Horrific' end after more barriers to access
In the months that followed, Mrs Clark said her husband's health plummeted.
He was admitted to hospital in September with pneumonia, and was bedridden, overcome with severe pain, had slurred speech, and was choking on everything he ingested.
"Everything he dreaded happened," Mrs Clark said.
"What was unacceptable for Alan was to be totally dependent on other people for his care and not be able to communicate, and that is what happened."
Mr Clark was then taken to an aged care facility in early October for palliative care.
Across the next few weeks, two voluntary assisted dying accredited doctors saw Mr Clark and agreed he had less than 12 months to live.
He was granted access to voluntary assisted dying around November 1, and was scheduled to be administered the life-ending drugs on November 4.
But two further barriers surfaced.
Mr Clark had "basically lost consciousness", which meant he could not consent to voluntary assisted dying – a requirement under the law.
And Mrs Clark found out "at the 11th hour" that the nursing home did not allow patients to access voluntary assisted dying.
It is lawful for nursing homes in Vic not to allow voluntary assisted dying.
It meant Mr Clark would have to be transported to his home by ambulance to be administered the medication.
Overwhelmed by these last few hurdles, Mrs Clark decided they would not follow through with voluntary assisted dying.
Hours later, and having not eaten for a week, Mr Clark passed away at the age of 82 with his wife by his side.
"It was just the most horrific end anyone could ever have to see a loved one go through," Mrs Clark said.
Problems with legislation
Mrs Clark said the legislation had too many barriers.
"I think the intention of the law is good," she said.
"But there are just so many barriers and so many hurdles that it takes a genius to work your way through it."
Mrs Clark said the Commonwealth law criminalising the discussion of suicide over telehealth and the lack of assisted dying doctors in regional Victoria made the process difficult.
Dying with Dignity Victoria vice-president Jane Morris said she had been in contact with people who had experienced similar problems in rural areas.
"The inequity of access for people living in rural areas has to be addressed," she said.
Ms Morris said the "time frame issue", where doctors had to determine whether their patient would die within 6 or 12 months to be eligible for assisted dying, was restrictive.
"Any illness doctor will tell you trying to give a prognosis is very difficult — you can't say everyone will follow a certain path," she said.
She also said patients should be able to access voluntary assisted dying in any residential facility, as allowed by South Australian law.
Voluntary Assisted Dying Review Board chairperson Julian Gardner said the organisation was also calling for the appeal of the telehealth law.
But he said the Victorian law was otherwise "operating safely".
The board, which monitors the safety and quality of the VAD system, will provide advice to state government when the Voluntary Assisted Dying Act 2017 is reviewed from June 2023.
Dying With Dignity Victoria will also provide a submission and encourage Victorians who have had experience with voluntary assisted dying to give feedback on the scheme via a survey on its website.
Push for access via telehealth
A Victorian government spokesperson said the government was actively trying to improve access to voluntary assisted dying for regional residents.
"We are doing everything we can to increase the number of medical practitioners who are trained to participate in voluntary assisted dying, which will give more regional Victorians access," the spokesperson said.
"We continue to advocate to the federal government to allow telehealth appointments."
Federal and state attorneys-general discussed the telehealth restriction during a meeting in August and it is understood the matter will be discussed again when they meet on Friday.
According to the Review Board's report from June, 1,425 Victorians have been assessed to access voluntary assisted dying since the law came into effect in June 2019.
A total of 1,035 permits have been issued and 604 died from taking the prescribed substance.
