‘We wouldn’t let a dog go through this’: The state wouldn’t help him die, so Glenn stopped eating

Warning: Distressing content

Glenn Mack had lived a wonderful life, but in April, the former university lecturer decided it was time to go.

After being knocked back from the state’s voluntary assisted dying scheme, the 85-year-old resolved to stop eating and drinking to hasten his death.

Glenn Mack has decided to end his life by refusing food and waterCredit: Justin McManus

“It’s not the death I would have preferred,” Mack told this masthead as he sipped a glass of rose in front of a crackling fire at a pub in Trentham, in central Victoria, on June 12, the day before he started refusing food and fluids.

“The ideal death would have been to have had all the family there and to receive the medication and then 20 minutes later, lights out. Instead, it has dragged on like this.”

Mack died on Sunday, July 6, after refusing food and fluids for three weeks. He sucked on ice cubes to relieve his parched throat until a week before his death.

It is not known exactly how many Victorians choose what’s known as “voluntary stopping eating and drinking” as a means of speeding up their death.

But doctors say those who choose this pathway have often been refused access to the state’s voluntary assisted dying scheme, don’t have time to go through the onerous process of applying for it or know they won’t qualify.

This masthead is aware of another recent case of a patient who stopped drinking and eating after realising that they would not qualify for the scheme.

The scheme, which was groundbreaking when it was established seven years ago, is now considered conservative compared to other states.

In Victoria, residents can request assisted dying if they have an advanced disease that is likely to cause their death within six months (or within 12 months for neurodegenerative diseases). Their advanced disease must also cause them unacceptable suffering.

Mack was refused access to the scheme because his specialist doctors were unable to definitively say that his host of medical conditions would kill him within six months.

Glenn Mack sitting at his favourite table at the Cosmopolitan Hotel in Trentham a month ago.Credit: Justin McManus

While Mack still had a good quality of life, frequent ministrokes had left him unable to properly move his legs. He used a mobility scooter to navigate his way from his nursing home to the Trentham shops.

A chronic lung condition – a legacy of decades of breathing in fumes while working as a stained-glass artist – made the father-of-five cough uncontrollably.

He feared his health would deteriorate further and he’d end up spending his days sitting in front of a television like some of the other residents in his nursing home.

“I’d like the state government to remove the obligation for specialists to sign that the patient will be dead within six months,” he said. “My health conditions will kill you, but the specialists can’t say exactly when. It’s absurd to ask that as a requirement.”

Mack had the support of his nursing home, with staff providing him with pain relief and other palliative care as he slowly slipped away. He was assured that he would be in no pain.

Dr Tom Callahan helped Mack navigate the application process for assisted dying and discussed the case with a dozen other doctors. He was unable to find anyone who would say that Mack had a six-month prognosis.

“That was devastating for Glenn,” Callahan told this masthead before Mack died. “He has a disease that will cause significant disability and it will kill him but it will happen slowly. Glenn’s fear is not death, it is disability. He is an intelligent man and has led a very fulfilling life and he doesn’t want to be bed bound and disabled at the end of his life.”

Callahan said Mack was his only patient to voluntarily stop eating and drinking, an option that he described as “very unappealing” for most people.

“Glenn is unusually motivated and dogmatic,” he said. “I think it would take a substantial amount of willpower when his health is OK. There are a lot of people clinging on in a much poorer state. But he values his health and mobility so much that he can’t fathom living without it.”

Callahan would like to see changes to the six-month life expectancy rule to allow people like Mack to access the scheme. He points out that in the ACT, one of the last jurisdictions to introduce a scheme, applicants must be diagnosed with a terminal illness but there is no timeframe-to-expected death requirement.

Under proposed changes to be brought before Victorian parliament later this year, doctors would be allowed to initiate conversations about voluntary assisted dying with patients and the eligible timeframe for all terminal diagnoses would be increased to 12 months, up from within six months for certain conditions. It’s unclear whether these mooted changes would have given Mack an alternative to death by starvation and dehydration.

An independent review of Victoria’s assisted dying laws released in February also proposed removing a ban on non-Australian citizens and non-permanent residents from accessing the scheme. These recommendations have been accepted by the state government.

“We are reforming our Australian-first voluntary assisted dying laws to make sure Victorians have the dignity of making their own decisions about the timing and manner of their death, no matter where they live,” a state government spokeswoman said.

The proposed changes – which Labor MPs will be given a conscience vote on – come as demand for assisted dying rises, with 597 permits issued in 2023/24, a 50 per cent increase since 2021/22.

Dr Nick Carr, who serves on the board of Dying with Dignity, said it was shameful that people with advanced and progressive disease were having to resort to starving themselves because they couldn’t access the scheme.

He recently treated a patient with early-stage dementia who stopped eating and drinking after realising he would be denied access to assisted dying.

Carr has been advocating for the scheme’s eligibility criteria to be expanded to include patients with dementia – something that was not recommended in the recent review.

The patient, who Carr described as “gregarious, intelligent and socially connected”, left his aged care home in March and returned to his apartment before he stopped eating and drinking.

“We didn’t have any confidence that the facility would be prepared to follow this through with him,” Carr said.

He said it was distressing for the patient’s family to watch their loved one die over eight days from starvation and dehydration.

“The first two or three days were not too bad,” he said. “But then he started becoming very dry, he got confused and quite agitated at times. When he finally lapsed into a coma, his suffering was over.”

While the experience was tough for the family, Carr said the alternative of them watching their loved one die from dementia over many years was much worse.

“What he heard was comforting music and the voices of people he loved,” he said. “He was in his own bed being looked after. So in the end, his demise was comfortable and peaceful, just the way he wanted.”

Mack had also been surrounded by family and friends in his final weeks – some travelling from across Australia and overseas to say goodbye. He wanted to make sure his family was on board with his decision.

“They wish it was otherwise, but they support my decision,” Mack said last month.

Some friends unsuccessfully tried to talk him out of it, saying he still had a lot to live for.

Denise Stevens, Mack’s partner of 13 years, remained by his bedside for 23 days while he slowly slipped away. The official cause of his death was renal failure due to dehydration.

“It was a very sad way to end what had been a very productive life,” she said. “We wouldn’t let a dog go through what Glenn endured. It’s an awful way to go.”

Stevens said Victoria’s assisted dying scheme needs to more clearly define what constitutes “unacceptable suffering”.

“It’s too subjective,” she said. “In Glenn’s view, the life that he was leading amounted to unacceptable suffering. He had lost his independence.”

She plans to write to the Voluntary Assisted Dying Review Board to raise her concerns.

Mack’s daughter, Catherine, said that while she was devastated to lose her dad, she understood his decision.

“He was so scared about what might happen when he has a bigger stroke and is then stuck in a state that he doesn’t want to be in,” she said before her father died. “I want him to stay but more than that, I want to respect whatever it is that he wants.”

Catherine said her dad taught her the importance of rest, going slowly and “sitting and watching”.

“He’d put on jazz music, he’d have a glass of wine and he’d just sit and watch the night fold in,” she said. “Those simple things were very profound when I was growing up. I have such beautiful memories.”

She said her dad spent his final days resting peacefully.

“This seems like such an awful process to go through but... he feels empowered that he can have some kind of control.”

During his long working life, Mack was a stained-glass artist, a sociology lecturer at RMIT, a researcher at the Department of Education, an ABC scriptwriter and a teacher.

In Trentham last month, he reflected on his time working as a teacher at a tiny school in a remote paddock in South Gippsland.

The school’s seven students would arrive for class wet and cold after milking the cows before dawn.

“I’d light the fire and read a story to them each morning until they warmed up and make them some soup and then we’d think about maths,” he recalled, tears welling in his eyes.

“I’ve done everything on my terms all my life, and this was about deciding when I finish on my terms, in my place of choosing, my time of choosing.”

Lifeline 13 11 14; Beyond Blue 1300 22 4636

The Morning Edition newsletter is our guide to the day’s most important and interesting stories, analysis and insights. Sign up here.