Shane's choice and the care our family needed.
My stepfather Shane lived with motor neurone disease for more than two years before choosing voluntary assisted dying.
When people hear that, it can be easy to reduce his story to those two things, MND and VAD. But Shane was a husband, a dad, a stepdad, a grandfather and a friend. He was also the person my mum planned to grow old with. They met when I was about 15, around 30 years ago. They had all those years together, but it still feels like they were robbed of the time they should have had.
Shane was a country boy who loved his family, animals, cars and trucks. The job he loved most was driving garbage trucks. When we started sharing his MND journey, people told us how much they missed his chats and how he'd bring bins out for people who were older or unwell. Those stories meant a lot to us. There was a whole person and a whole life before MND.
Trying to get help
Living in regional Victoria affected almost every part of our experience. We contacted provider after provider trying to find people who could service Alexandra. With MND, someone's needs can change before an assessment is completed, funding is approved or equipment arrives.
Shane had breathing difficulties relatively early and later relied on feeding through a tube into his stomach. Communication became harder too. He struggled with technology and used a whiteboard a lot, so losing hand function threatened another part of his independence.
One of the hardest periods came when Mum desperately needed help with his tube feeding and medication. She was exhausted. When things reached a crisis, we contacted Carer Gateway and Dr Helen Haines MP, the Independent Federal Member for Indi. Helen's office went above and beyond trying to help.
Eventually Carer Gateway found a local service with the skills we needed. We hadn't known it existed, and the people we'd dealt with through My Aged Care hadn't pointed us towards it. Finding that help took around two weeks, and it was only after we told people Shane had decided to use VAD. It shouldn't have taken that. I still think about what might have been different if we'd known about the service months earlier. We also don’t know for sure they had capacity as it was ultimately too late for us to explore that path by the time it was found.
Having a choice and deciding it was time
Shane had already been approved for VAD long before that care crisis. We firmly believe he would have wanted it available regardless of the difficulties getting care.
I had first raised the subject with Mum because I wanted Shane to know his options. I printed information, Mum later shared it with him, and it didn't come up again for months. As he declined, Shane himself raised the subject of seeking approval. Initially, he hadn't said for sure he would use it. He wanted the option.
He later told us that being unable to walk or use his hands would be his line. That was his personal limit, not a judgement about anyone else's life. Another person at the same physical stage might want every possible day, and that choice deserves the same respect.
When Shane said he'd had enough, he could still walk, although not well and with a walker. From what he told us, the difficulty getting care and seeing his family struggling also mattered to his decision about timing. We don't know whether better support would have given him another day, weeks or months that he considered worthwhile. He was entitled to change his mind about his limit. We supported his decision completely, and we still do. We can also ask why he and Mum couldn't get the help they needed. I don't think respecting his choice means we have to leave that part out.
What distance meant for Shane
Accessing VAD brought its own difficulties. The assessments and safeguards matter, but getting to the practitioners who provide them can be an ordeal.
Our family sold Mum and Shane's car and self-funded an accessible van. On the way home from one appointment, in 37-degree heat, they stopped to use a public toilet and Shane lost control of his bowels before he made it. Mum had to help him undress and clean up.
Shane was okay with me sharing his story in full. I share this because I want people to understand what travel means when you're seriously ill. Getting to an appointment can involve feeding, toileting, transfers, fatigue and communication difficulties before the journey even begins.
Commonwealth laws restrict telehealth for important parts of the VAD process. Victoria's review recognised the disproportionate effect on regional people and those with mobility difficulties. I want us to work through safe ways to reduce that travel, including whether local health professionals could support an appropriate remote assessment. I don't have all the answers, but I think we should be willing to find them.
We were fortunate to find a lovely doctor from the Shepparton area, who treated Shane with compassion and respect and came to our home on the day he died. We paid $300 privately for her attendance. I don't begrudge her being paid; I don't think that amount properly reflects her time and training either. Medicare can help with some VAD counselling and assessment appointments, but it doesn't cover the procedure itself. I worry about a family having to find money for an appointment at that point, on top of everything else.
Care and choice belong together
At the National MND Conference in Adelaide, a discussion involving Andrew Denton reinforced something I feel strongly: VAD and palliative care should work together. People need good care, equipment, communication support and help to remain at home. They may still reach a point where their suffering is more than they are prepared to endure. That point was Shane's to decide.
The conference also left me wanting the people making these policies to spend more time listening to lived experience. Families' stories need to shape what changes, especially when the services that look adequate on paper aren't reaching them.
Our family wanted more time with Shane, but not at the cost of asking him to keep suffering for us. If someone could have taken MND away, he would have stayed here with Mum. That choice wasn't available.
On 19 April 2026, Shane used VAD at home and died peacefully, surrounded by people who loved him. Even that day, he had opportunities to change his mind. He remained clear about what he wanted.
We weren't always sure what to expect or how to prepare. Earlier help with the practical questions, including what Shane wanted on the day, would have made a difference for us as a family.
It was heartbreaking and still is. But there's a difference between being devastated because someone has died and being traumatised by the way they died. VAD gave Shane some control back, and I'll always be grateful for that.
He deserved support to live the life he still wanted, and to decide when his suffering had become too much. Families dealing with terminal illness already have enough to fight. They shouldn't have to fight the system as well.
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