‘Walk in my shoes for a bit’: Cyril’s fight to die on his own terms

When Cyril Land’s voice began to fail, changing overnight into a croaky whisper, his wife, Lee, knew something was wrong.

It took another seven months before the Wodonga man received a devastating diagnosis: motor neurone disease.

But that was just the first hurdle. Cyril would spend another four months fighting for the right to die on his own terms.

“The legislation doesn’t really add the human factor,” Lee said of the gruelling process that forced the pair to drive for hours to secure approval for voluntary assisted dying from two medical practitioners.

A new national report shows that these struggles are common, and have led to a disproportionately low number of Victorians applying for and accessing voluntary assisted dying.

While Victoria was the first state in Australia to legalise voluntary assisted dying (VAD), its proportion of deaths attributed to the scheme is at least half that of other states.

“There is some sort of access block,” said Dr Linda Swan, the chief executive of Go Gentle Australia, which compiled the 2026 State of VAD report.

There were 799 applications for voluntary assisted dying in Victoria last financial year, compared with 2146 applications in NSW, 2039 in Queensland and 878 in Western Australia.

While 389 VAD deaths were recorded in Victoria, 1028 were recorded in NSW, 1072 in Queensland and 480 in Western Australia. This means 0.9 per cent of all deaths in Victoria were through voluntary assisted dying, compared with a national average of 2 per cent.

Swan said the legacy of Victoria’s gag clause, which has prevented doctors from raising the topic of voluntary assisted dying with patients, had stifled access to the scheme.

While the state government has recently passed legislation to lift this clause following a review of Victoria’s VAD scheme, this change will not come into effect until April 2027.

“When a gag clause is introduced, it creates a real stigma that gets embedded in the belief systems of people, and it’s hard to undo,” Swan said.

“It has been cemented in the belief systems of not only health professionals but aged care facilities, who somehow interpret it to mean they’re not allowed to talk about it either.”

A Victorian government spokesman said its reforms would make the law fairer, and it was improving access to the scheme by growing the voluntary assisted dying workforce in regional and remote parts of the state.

He said the state government was also advocating for the Commonwealth to remove restrictions on the use of telehealth for VAD assessments.

“[This] has a disproportionate impact on Victorians in regional and remote areas,” he said.

A spokesman for the Albanese government said it was considering the complex issues arising from the Commonwealth legislation and voluntary assisted dying schemes, in consultation with the states and territories.

In Victoria, two independent, specially trained medical practitioners must agree that a patient is eligible for voluntary assisted dying before a permit is approved.

One of the biggest hurdles for Cyril Land was finding a VAD doctor in regional Victoria. There is only one such doctor in Albury/Wodonga, but they work on the NSW side of the border so can’t treat Victorian residents.

The 75-year-old’s next best option was a voluntary assisted dying doctor in the northern Victorian town of Tatura, which is a 2½-hour drive from his home.

Cyril then faced another long drive to Wangaratta to visit a neurologist, who signed his application and stated that he was expected to die within 12 months.

It’s a situation that Jo Whitehouse, MND Victoria general manager support services, knows all too well.

“Individuals may need to travel four to six hours to access a specialist MND clinic or appropriately trained practitioners,” she said, adding that the cost of this travel could be prohibitive.

“As MND progresses, mobility and respiratory function are often significantly compromised, making travel increasingly difficult.”

The report found that voluntary assisted dying now accounted for about one in 20 cancer deaths nationally and about one in three motor neurone disease deaths. The median age of participants across Australia was 75.

Cyril first toyed with the idea of voluntary assisted dying while sitting around a fire and chatting with a group of friends last winter.

When a peer expressed opposition to VAD, Cyril got fired up. “I’d like you to walk in my shoes for a bit,” he said. “Just imagine what it’s like to be told you’ve got three to five years left to live.”

When he returned home that night, he told his wife of 20 years that he wanted to apply for VAD.

The couple have spent the past few years ticking off things on Cyril’s bucket list. They have flown over Antarctica, taken a cruise around New Zealand, travelled through the Australian outback on The Ghan and whale watched in Eden.

“We’ve done a lot. We certainly have,” Lee said.

As the disease has progressed, Cyril’s voice has become difficult for many people to understand and his fingers have bent inwards. Lee blends his meals in a food processor to prevent him from choking.

The former bus driver, Tax Office employee and competitive cyclist struggles to regulate his temperature, so often walks about the house without a shirt.

He intends to access voluntary assisted dying from home when he becomes bedridden.

But a complication looms over his plans. If Cyril needs to be admitted to hospital it will be in Albury, which means he won’t be able to access VAD because his approval is for Victoria.

A feeding tube has been placed in Cyril’s stomach to make it easier to administer his daily medication, and when the time comes, it will be used to release his VAD medication.

His doctor will have to drive for more than two hours to administer the medication – a journey that attracts no Medicare rebate.

Under the law, Cyril’s doctor will have to ask him one last time if he wishes to proceed.

Cyril plans to respond with a simple, silent gesture.

“His fingers are curled up, but he can stick his thumb up or down,” Lee said.

“Thumb up, thumb down is the one we will go for.”

With Kate Aubusson