On the balcony of their Melbourne home, Liz Tower held her fiancee Alex Blain for the last time.
Their families had already said their goodbyes.
Now the young couple were alone. They put on one of their favourite songs.
"Alex took the medication … He said: 'Fuck cancer.' And then we sang [David Bowie's] 'Heroes' to each other until he went to sleep," Liz tells ABC RN Breakfast.
Warning: This story contains discussion of voluntary assisted dying and terminal cancer which some readers might find distressing.
Alex Blain was 28 years old on January 5, 2021, the day he ended his life by taking legally prescribed drugs.
He's one of the more than 331 people who have died since Victoria allowed terminally ill patients to access life-ending drugs through its voluntary assisted dying laws.
When those laws passed the state parliament in 2017, they broke a national taboo around euthanasia that's existed since the federal government overturned the Northern Territory's breakthrough legal reforms in 1997.
Since then, every state has legislated its own version of voluntary assisted dying, with New South Wales the final state to pass its laws this month.
Alex's experience provides a rare insight into what this will mean for the people who use these laws and their families.
How Alex chose assisted dying
Alex's family describe him as an engineer intent on changing the world. He had hoped his training could be turned to problems like food shortages and climate change.
"You'd never find anyone who could get more animated over a topic most people wouldn't be able to understand," his sister Julie Blain says.
His partner Liz agrees. When they first met, Alex explained how it was possible to save an injured bee by giving it sugar water.
"I think that reflects his kindness and the way he observed the world," she says.
But in 2019, Alex found a lump in his leg.
A month later, he was diagnosed with Ewing's sarcoma, a rare and deadly cancer. Suddenly he was undergoing chemotherapy and losing hair.
The treatment didn't work.
"[Alex had] started to be in pain and had stopped being able to go for walks more than a couple of hundred meters," Liz says.
As tumours spread in his lungs and his pain got worse, he made a considered decision.
Alex asked his oncologist to help him apply to end his own life
"This gave him peace of mind," Liz says.
"If Alex was happy, I love him and that made me happy.
"But it was also hard because these conversations meant that, at some point, I would have to live without him."
In Victoria, patients can only be given access to life-ending drugs under a strict set of circumstances.
They must be over 18 and have an incurable disease or illness that is already advanced and expected to cause death within six months — or 12 if they have a neurodegenerative condition. There must be no other way their suffering can be relieved in a way they find tolerable.
They must also have the capacity to make the decision free from coercion. Two specially trained medical practitioners have to assess their eligibility.
Alex was found to be eligible. So he set a date and a time.
'Immeasurable' peace of mind
Before the day arrived, Alex's family prepared a book with photos from his life and goodbye messages from friends.
"Thanks Alex," his parents Gillian and David wrote. "We have loved every bit of our time with you and you always will be with us."
That morning started like any other, as Alex and Liz waited at home for their families to arrive.
After everyone had said their goodbyes, the couple stepped out onto the balcony. At 1pm, Alex took the medication that would end his life.
Before he died, Alex wrote a brief note explaining his experience with voluntary assisted dying, hoping it might raise awareness for other patients in need of the service.
"I had 19 rounds of chemo, I handed my treatment and body over to medical professionals for over a year and in many ways lost autonomy over my body," he wrote.
"I can show myself compassion and choose not to die of cancer.
"It is a small thing but the peace of mind it has created is immeasurable."
Now his family is raising money for research at the University of Sydney's Nano Institute in his honour.
To them, cancer and assisted dying are the least interesting things about Alex.
More doctors needed
Palliative care doctor Greg Mewett has been watching how Victoria's assisted dying laws have been implemented.
An early supporter of the laws, he's since helped around 50 terminally ill patients end their lives.
When Victorian patients aren't able to take the drugs themselves, doctors are allowed to assist them. It's something Dr Mewett has only had to do once.
"It was a profound moment, I can't get away from that. I felt a sense of inner calm and satisfaction," he says.
In Victoria, it is illegal for a doctor to raise the possibility of voluntary assisted dying — the patient has to raise it first.
Most of the people Dr Mewett has assessed as eligible have had cancer.
The state's formal reporting on the implementation of its voluntary assisted dying laws show that's typical.
The average age is 72 but applicants have ranged from 18 to 101. There's a roughly even gender split, and just over a third of people who apply are from regional areas.
Associate Professor Charlie Corke, acting chair of Victoria's Voluntary Assisted Dying Review Board, says there's no evidence anyone has been pressured to die against their will since the laws were introduced, which was something opponents raised as a potential concern.
He says the major issue has been supplying enough doctors to meet demand.
"More people have used the service than anticipated," he says.
"I think the board would be happy if there were more doctors who were trained and available, particularly in regional areas."
Concerns remain
Every state has now followed Victoria's lead with slight variations.
However, both the ACT and NT have been prevented by federal law from introducing their own reforms.
Australian Medical Association president Dr Omar Khorshid says the state schemes need to be carefully monitored to make sure people don't turn to voluntary assisted dying because other treatments are too expensive.
"It's too early to know for sure whether any of these changes are starting to happen in our society," he says.
Samantha Connor, the president of People with Disability Australia, has long argued against the laws. Her concern is that people with disabilities may resign themselves to death because of hopelessness or depression.
"If you don't have good support through the NDIS, if you don't have good care management, if your suffering is intolerable not because you're in pain but because you feel like a burden, what does that look like?" she asks.
While she doesn't know of any specific cases of concern yet, she's worried safeguards might not be working. She's also concerned there isn't enough data available about how and why people with a disability are accessing the schemes.
She says ultimately it might not be that hard to convince a doctor you need life-ending drugs in a society that often fails to value people with a disability.
RN in your inbox
Get more stories that go beyond the news cycle with our weekly newsletter.
