Veteran Victorian firefighter Troy Thornton will die in a Swiss euthanasia clinic late on Friday, but before he goes, he has a desperate last wish.
He wants the nation to think deeply about the concept of dying well, and to challenge the notion that choosing death is somehow wrong.
The 54-year-old is scheduled for a lethal injection late on Friday, Australian time. His wife Christine will be there to hold his hand, but he will die without his two teenage children, Jack, 17, and daughter Laura, 14, by his side. He farewelled them on Sunday.
Mr Thornton desperately wishes he could legally end his life at home in Australia, with all those he loves around him.
But despite Victoria becoming the first state to legalise voluntary assisted dying, he doesn’t qualify.
His disease – multiple system atrophy – is a progressive neurodegenerative disorder. There are no treatments and there is no prospect of recovery but death can take years.
He hasn’t slept well since he arrived in Switzerland less than a week ago, waiting for his date with death.
“The hardest thing I’ve ever had to do is say goodbye to them (his children). It just destroyed me,” he told AAP, his voice weary from an incurable disease, overlaid with stress, emotional trauma and jet lag.
A father’s grief
He is still dealing with the grief of leaving them behind with their grandparents, on a one-way trip to the same euthanasia clinic where Australian scientist David Goodall ended his life last year.
For Goodall, at the age of 104, it was all about choice. He was tired, he said, of being old. He simply did not want to go on, having outlived so many of his friends and family members. He was choosing to die on his terms.
And so it will be for Troy when he keeps his own appointment with death, because for him, the alternative is unfathomable.
He admits to a strange mix of gratitude, sadness and an inevitable fear about presenting his arm to Swiss doctors who will administer the lethal injection.
But there’s no less fear associated with the alternative: his choice, dignity and freedom slipping away as his disease, multiple system atrophy, ultimately reduces him to a “vegetable”.
With no treatments for his disease, let alone a cure, the 54-year-old doesn’t see his decision to end his life as brave, rather, as pragmatism.
“It’s so surreal and sometimes I do think what the hell am I doing here? Why did I make this decision? But then you see what you’ve got and it’s not going away. I’m lucky to be here because the alternative is pretty ugly,” he said.
Troy ended up in Switzerland after realising he would not meet the criteria for Victoria’s voluntary assisted dying laws, which take full effect from the middle of this year.
‘You don’t die of it, you die with it’
He applauds those laws, even though they haven’t been of any help to him.
He could not find two doctors who would say, with certainty, that his neurodegenerative disease would kill him within 12 months, a requirement of the Victorian laws.
“Doctors have always told me that you don’t die of it, you die with it. You can live for quite a few years, but severely disabled I might add. You end up being a vegetable,” he said.
“After a while it attacks different systems, breathing, swallowing. I’d end up drowning in my own mucous, that’s what happens.
“It’s so surreal and sometimes I do think what the hell am I doing here?” the father of two said.
When Troy speaks to AAP he has about 24 hours left to live, give or take, but he chooses to spend one of those hours explaining why Victoria’s laws must be the start of the conversation about euthanasia in Australia and not the end.
He says the danger is people will think the issue has been resolved, “but what the guy in the street doesn’t understand is that those laws don’t help people like me who are also suffering. These laws need to evolve.
“The focus is on being terminal is wrong. It’s about the right to choose how you die, no matter how old you are, no matter what sickness, or non-sickness you’ve got. If you are of sound mind – and that’s important – you should be able to choose,” he said.
Troy says “it would just be perfect” if his children, and all of his family and friends could be with him too when he dies.
“My friend’s dad, he was 85, died recently. He had his whole family there. They were watching footy and he died with them all around him. That’s really nice, that’s how you want to go out,” he said.
“But I am lucky I’ve got my wife here. And I’m fortunate I have the means to do this. There are so many people that die a pretty bad death because they don’t have the means to go to Switzerland.”
In the four years since Troy was diagnosed, he and his family have had a lot of time to come to terms with his planned death.
“There’s been a lot of grieving already. We’ve prepared, my wife and children, they know what’s coming,” he said.
He adds that it might sound like “a bit of a wank” but believes he’s also worked out the meaning of life, which comes down to two things.
“The first one’s a no-brainer. We’re here to propagate, to evolve the species, to reproduce. The second one is that you’re here to inspire,” he said.
“Fundamentally, those two things underpin relationships and life is about people.”
With several strangers asking him if they could join him on Friday, Troy says he told them, “the more the merrier”.
“Just to be surrounded by human beings when you take your last breath, it’s a nice thought,” he said.