Choice, dignity and access: our family’s VAD story
by Nicole Answer
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, a Glampa, a brother, an uncle, a father-in-law and brother-in-law, and a friend. He was a person who had a life he loved before MND slowly started taking pieces of it away.
He was also the person my mum planned to grow old with.
Shane and Mum met when I was about 15, around 30 years ago. They found each other later in life, and so many people have said to us that they wish Shane could have met Mum earlier. I feel that too. 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 through and through. He lived in the same area of regional Victoria his whole life. At one stage he was a small business owner, but the job he loved most was driving garbage trucks. He loved his work, took pride in it and built a great rapport with people around the area.
We were surprised by how many people reached out when we posted about his MND journey or our fundraising. People talked about missing him stopping for a chat. They told us how he'd get out of the truck and bring their bins out or put them back when he knew they were older or sick and couldn't manage it themselves. He was just a genuinely nice guy, and hearing those stories meant a lot to us.
He knew an incredible amount about cars, trucks and mechanics. He loved animals and he loved his family. He was practical, independent and happiest living the fairly simple country life he and Mum had built together. That's important to me when telling his story, because there was a whole person and a whole life before any of this. There are real people behind these problems with the system and all the red tape, and it's easy to forget that.
Living with MND in regional Victoria
Our family knew MND was terminal. We knew there was no cure and we knew things were going to get harder. What I don't think any of us were prepared for was how much of our energy would be spent trying to navigate the systems that were supposed to support Shane and Mum through it.
Living in regional Victoria affected almost every part of that experience. Finding occupational therapists, carers and other support wasn't simply a matter of making a phone call and booking someone. At different points we contacted provider after provider, trying to find people who could actually service the Alexandra area.
When you're dealing with MND, delays matter. Someone's needs can change significantly in the time it takes to get an assessment completed, a report written, funding approved or equipment arranged. Something identified as being needed today may already be inadequate by the time it arrives.
Shane experienced breathing difficulties relatively early. Around eight months before he died, he lost the ability to eat and relied on PEG feeding through a tube into his stomach. His mobility continued to deteriorate and he could no longer do many of the things that had made up his day-to-day life. Communication became increasingly difficult as well.
There is some amazing assistive technology available, but Shane had never been particularly comfortable with technology. He struggled to adapt to an iPad and was very slow typing on his phone. Sometimes we'd think he must be typing a whole story, then we'd look and he'd managed one or two words. He ended up using a whiteboard a lot to communicate, so when he started to lose some hand function, he knew his ability to communicate easily was being taken away as well.
We never really got to properly explore eye gaze technology with him. Could he have adapted to it? Quite possibly, with time and help. But I don't know whether the support he would have needed to get it working was available locally either. Would earlier access, different funding or more support have given him more independence? Maybe. Would it have changed his ultimate decision about VAD? Maybe not.
We simply don't know.
One of the hardest periods came when Mum desperately needed more support at home. Two of the things we were struggling most to find help with were PEG feeding and giving his prescribed medication through the tube. Mum was exhausted, Shane's needs were increasing and we were trying to find people with the skills to help.
When things reached a crisis and Shane said he wanted to use VAD, we contacted Carer Gateway and Dr Helen Haines MP, the Independent Federal Member for Indi. Helen and her office had helped us before when we'd hit serious roadblocks, including Centrelink delays. This time was no different. Her team went into action trying to find a solution.
They even appealed directly to the Hon Mark Butler MP, Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme. Unfortunately, that desperate appeal didn't bring the help we needed. It felt like it had fallen on deaf ears. Helen's office went above and beyond to try to help, and we are so grateful for that.
Eventually Carer Gateway found another support service in Alexandra that we hadn't even known existed. It turned out they had people skilled in the very things we had been struggling to get help with. The people we'd dealt with through My Aged Care hadn't pointed us towards them either. As far as we could tell, they didn't advertise and were almost invisible. That service hadn't come up once in the previous 23 months, and by then it was too late for us.
Finding that help took around two weeks, and it only came after we told people Shane had decided to use VAD. It shouldn't have taken that, and for us it came too late. During that period Mum rang completely distraught, and I still think about the months that might have been different if we'd known about that service earlier. We were making all these calls, trying to find help, and there were people locally with the skills we needed who we didn't even know about. That is incredibly frustrating.
Finding out about VAD
I've followed the debate about voluntary assisted dying in Australia since I was a teenager. I even wrote an essay about it in high school, based on my aunty, who also had MND. I think I was 12 or 13 when she died. I'm 45 as I write this, and I still think about watching her decline and knowing that, at times in the later stages, she wanted her suffering to end but couldn't access VAD.
We were close to her, her husband and her kids, although we didn't have the same close involvement that we later had with Shane. Even so, watching that as a kid stayed with me. I still wonder what might have been different for her. It made me a firm supporter of VAD, and I felt it was a positive change when Victoria passed its legislation in November 2017, with access beginning on 19 June 2019.
One thing I found frustrating was what people often call the gag law. In Victoria, health practitioners couldn't bring up VAD with Shane themselves, although they could respond if he asked. That meant he first had to know it existed. He might have come across it himself, or someone outside his treating team had to tell him. It bothered me that this responsibility could fall to a family already trying to cope with a terminal diagnosis.
So I first broached the subject with Mum. I said Shane might never want to use it, but it was important he knew it was an option. There were strict eligibility requirements and a process to go through. I worried that, with MND, he might find out too late and struggle to travel or communicate his wishes. Losing speech doesn't in itself rule someone out of VAD; people can communicate through gestures or other means. But knowing how hard communication and travel would become for Shane, I didn't want him to miss the chance to explore it, if that were his wish.
When I first mentioned it, Mum was really angry with me, and I understood. I think some of that anger was at Shane having MND, at what he was facing and at the future she would have without him. Maybe it was also that we even had to be the ones to have this conversation. Maybe she was angry at me too. I don't know. I'm not Mum, and I don't want to speak for her. I'm only guessing, and I guess she'll tell me when she reads this.
I printed the information and put it in a folder so Mum could have some time to process it. A bit further down the track, she spoke to Shane and gave him the information to read. It didn't come up again for many months.
As Shane declined further, he raised the subject of seeking approval for VAD himself. From memory, it came up when he and Mum were at a medical appointment. He was referred on, the process was explained and he went through the assessments. At that stage he hadn't said for sure that he would use it. He wanted to have the option.
From 19 April 2027, doctors and specified other registered health practitioners in Victoria will be able to raise VAD when discussing end-of-life care options, under the new requirements. I think that matters. The rules aren't the same everywhere; South Australia also restricts health practitioners from initiating the conversation.
I think we need to become more comfortable talking about death and dying generally. Talking about VAD doesn't make somebody choose it. Simply knowing the option exists may give someone with a terminal illness some control over what lies ahead. Someone might start the process and change their mind, or decide the care they're receiving is enough and they want every possible day. They need the information to work that out for themselves. Avoiding the conversation doesn't help.
Having VAD available and deciding to use it
I want to be clear about the difference between Shane deciding he wanted VAD available to him and eventually deciding it was time to use it. He had been approved long before that care crisis. We firmly believe he would have chosen to have VAD available regardless of the failures we experienced in accessing care.
When Shane started the approval process, he could still walk. He was struggling with eating and had experienced a substantial decline, but he was still mobile. As time went on, he made it clear that if he reached the point where he couldn't walk or couldn't use his hands, he would want to use VAD. That was confronting for us, but we understood and supported him.
That was Shane's line. It wasn't a medical definition of quality of life, and it certainly doesn't mean another person with MND should feel the same way. Someone else could reach exactly the same physical stage and, with the right care and support, continue to have a life they find fulfilling. They might adapt more easily to mobility equipment, communication devices, eye gaze technology and increasing levels of personal care. They might want every possible day, and that choice deserves exactly the same respect.
For Shane, being able to walk and use his hands mattered to his remaining independence. He'd already lost the ability to eat, communicating was difficult and he couldn't do many of the things he enjoyed. His hands also helped him communicate through the whiteboard. He knew his own limits better than any of us could.
But when Shane told us he'd had enough, he could still walk, although not well, and he needed a walker for support. From what he told us, not being able to get the care and seeing his family struggling around him also mattered to his decision about timing. Maybe he would have lost the ability to walk the next day. Maybe it was weeks away or months away. We just don't know.
He was absolutely entitled to change his mind about where his limit was, for whatever reason. I don't want any of this to sound as though we didn't support his decision, because we absolutely did and we still do.
We're also frustrated that he and Mum couldn't get the help they needed. The care failures didn't create his decision to apply for VAD, but they did matter to when he decided he'd had enough. I don't think we should have to leave that out of his story in order to make it clear that we respect his choice.
Could better support have given Shane more time that he personally considered worth living? We'll never know. We can only talk about the circumstances he actually lived in and what he told us. I think we should be able to look honestly at the failures in care without taking his decision away from him.
Accessing VAD from regional Victoria
Getting VAD approved had its own difficulties. Victoria has a legal VAD scheme, but having a legal right to apply for something and being able to practically access it aren't always the same thing. The assessments and safeguards are important. Finding appropriately qualified practitioners when you don't live in Melbourne or another major centre is the difficulty.
For someone with MND, getting to an appointment can mean getting dressed, transferring, managing mobility equipment, communication difficulties, fatigue, toileting, feeding and everything else that comes with the disease. Then there's the travel itself. Sometimes you have to travel to a VAD doctor, and sometimes you have to pay for one to come to you.
As a family, we'd made the decision to sell Mum and Shane's car and self-fund a small imported accessible van. Fortunately Mum had it by the time Shane was going through his VAD approval appointments, so she was able to transport him. But having the van didn't make the trips easy.
On the way home from one appointment, it was 37 degrees. They stopped so they could both use the toilet, but unfortunately Shane had an accident. Mum had to help him undress and clean him up in a public toilet. Here he was, already dealing with this awful disease, having to go through that as well. It wasn't the only time it happened, but it was the first, and I think about how hard that must have been for both of them.
I don't share that to take away Shane's dignity. Shane was okay with me sharing his story in its entirety. I want people to understand what we're asking of someone when we say they have to attend an appointment in person. Shane had already been seeing neurologists and GPs. I understand the VAD assessments still had their own requirements, but I just don't understand why an appropriate part of that process couldn't have been done by video with proper safeguards.
The Victorian Government's own review of the VAD system recognised that telehealth restrictions disproportionately affect regional and rural people and people with mobility difficulties. Our experience showed us exactly why. Travelling for a medical appointment isn't necessarily a simple inconvenience when you're terminally ill.
We were incredibly fortunate to find a lovely doctor from the Shepparton area, who was involved in Shane's approval process and later travelled to our home to assist in administering the medication. She was wonderful. She treated Shane with respect and compassion and never made something so personal feel cold or clinical.
Something people might not realise is that we paid $300 privately for her attendance on the day Shane died. That cost wasn't covered by Medicare. It was handled very respectfully, and there was no rush. I think she was with us for a couple of hours, as well as her travel time, and that took her away from seeing other patients.
I don't begrudge her being paid for that work at all. It's an important and difficult role, and doctors need to be properly supported to do it. But $300 was manageable for us. What about a family who doesn't have it? I don't know whether a cost like that has stopped someone from accessing VAD, but I worry that it could. I also don't think that amount properly reflects her time and medical training.
Medicare can help with eligible VAD counselling and assessment appointments, but it doesn't cover the procedure itself or services directly related to it. Families have enough to deal with at that point. I don't think being able to afford an appointment should be another worry.
Why telehealth matters
Telehealth has become a normal part of healthcare. Yet Commonwealth laws about using a phone, video or other carriage service restrict its use for important parts of the VAD process. Victorian guidance requires the relevant discussions and assessments to happen face to face, and Victoria's five-year review identified this as a barrier to access.
There is now a bill before the Senate that would change the Commonwealth law so these restrictions no longer applied to VAD that is lawful under state or territory law. It was introduced on 13 August 2026 and, as I write this in September, we're still waiting. I hope it gets through, because people who are terminally ill don't have time to keep waiting for the system to catch up.
I understand that people have concerns about coercion and how a doctor can be sure someone is making their own decision. Those concerns matter. But I feel like we should be trying to work out how to manage them, rather than treating them as the end of the conversation about telehealth.
Could a local GP or nurse help support a remote assessment with a qualified VAD practitioner? Could we use the healthcare people already in an area, instead of requiring a seriously ill person or a doctor to travel for hours? The doctor would still need to make a proper assessment and be satisfied the person was deciding freely. I don't have all the answers. I just think these are things we should be willing to work through.
In some of the online conversations I've had, people say they oppose telehealth, but when you talk to them it turns out they actually oppose VAD. That isn't everyone, and someone can support VAD and still have concerns about telehealth. I think it's important to understand which conversation you're having. People don't have to choose VAD for themselves, but I don't think that should mean they get to prevent somebody else from making that choice.
Telehealth doesn't have to mean removing safeguards, and it doesn't mean every part of the process has to happen remotely. The people trying to access this are terminally ill. There isn't a cure for what they have. We need to keep them, and what we're asking them to go through, at the centre of these decisions.
VAD and palliative care should not be opponents
At the National MND Conference in Adelaide, I listened to a discussion involving Andrew Denton. One of the things that stayed with me was the conversation about VAD and palliative care working together. I think we do ourselves a disservice when we talk about them as though choosing one means rejecting the other.
Good palliative care matters enormously. So does access to carers, equipment, allied health, communication technology, symptom management and enough support to remain safely at home if that's where someone wants to be. We should be doing everything reasonably possible to help someone with a terminal illness live as comfortably and meaningfully as they can, for as long as they want to.
The Victorian VAD system requires a person's decision to be voluntary, enduring and fully informed, including being informed about treatment and palliative care options. But there may still come a point where, despite good care and symptom management, their suffering is more than they're prepared to endure. That point wasn't for me, Mum, my sister, his grandchildren, our extended family, his friends or any health professional to decide for Shane.
It was his decision.
I want people like Shane to have access to VAD if they decide it's right for them, and I want them to have good palliative care and enough help at home. It worries me that someone could feel they'd run out of options because they couldn't get that care. We need to fix those failures. VAD should be a choice someone can make alongside proper support.
Someone who tells us their suffering has become more than they can tolerate needs to be heard too. I don't want the failings in Shane's care to be used to dismiss what he was telling us or make it harder for somebody else to access VAD.
Compassion goes both ways
I'm a huge animal lover. I've been known to say that dogs are the best kind of people and, honestly, I hold animals in incredibly high regard. There's something about the way we respond to suffering in animals that I've always found interesting.
When one of our pets reaches a point where their quality of life is gone and they're suffering, we understand that sometimes the hardest and most loving thing we can do is let them go. We don't keep them alive simply because we aren't ready to lose them. As heartbreaking as it is, we try to put their suffering ahead of our own wish for more time.
I'm not suggesting decisions about animals and VAD for humans are the same. With VAD, the person themselves is making the decision. There are eligibility requirements, medical assessments and safeguards for good reasons. But I do think we can bring that same compassion to the conversation about suffering. When an adult with a terminal illness has the capacity to decide, understands their options and keeps telling us they've reached their limit, we should be able to hear them without making the subject itself taboo.
Loving someone doesn't mean asking them to suffer for you
Our whole family was devastated at the thought of losing Shane. Mum was losing the person she'd planned to grow old with. My sister and I were losing our stepdad, his grandchildren were losing their Pop, and our extended family and friends were losing somebody they loved. Of course we wanted more time with him.
But none of us wanted more time if it meant Shane had to keep suffering purely for our sake. I think that's one of the hardest parts of loving someone with a terminal illness. Your instinct is to hold onto them for as long as possible, but you also have to recognise that their experience of the illness matters more than your fear of losing them.
Supporting Shane's decision wasn't about wanting him to die. He didn't want MND. If somebody could have taken it away and given him his old life back, he would have stayed here with Mum. That choice wasn't available. What he could choose was how far he was prepared to let the disease take him.
What we didn't know as a family
One thing I don't think we were prepared for was the day itself. We didn't really know what to expect or where to go to ask. We'd been dealing with MND for more than two years, watching Shane lose parts of his independence and trying to get enough help. You're grieving someone before they've gone, and doing that for a long time takes its toll.
Looking back, there are things I might have done differently if we'd talked them through earlier. There was that last-minute rush around whether he wanted music playing or something else, who Shane wanted with him and what else had to be organised. I don't think we'd really planned that side of it very well. We were doing the best we could, but I wish we'd had someone to help us think about those things before the day arrived.
Even a simple guide, or a number families could call to ask what to expect, would have helped. What might the day look like? What happens after the person dies? Who do you call? We were having this strange conversation with a funeral home while Shane was still alive, and it felt odd to be talking about what would happen afterwards. But those are things families need to be able to ask about.
I think part of the problem is that we don't talk about death very comfortably at all, and people can get more uncomfortable again when it's VAD. We all know we're going to die one day. Talking about it doesn't change that fact, and planning doesn't mean you're giving up on someone. I have also contributed to a book due for release in 2027, intended to help families through this experience, because I think there's a real gap in that practical support.
The day Shane chose
Once Shane decided it was time to use VAD, I never saw him second-guess that decision. Even on the day he died, he was given opportunities to change his mind. MND had made physically communicating difficult, but there was no uncertainty about what he was telling us. He knew what he wanted.
On 19 April 2026, Shane chose to use VAD at home, surrounded by people who loved him. It was peaceful.
I don't think any family would describe the death of somebody they love as a good day. It was heartbreaking and it still is. But there's a huge difference between being devastated because someone you love has died and being traumatised by the way they died.
We knew Shane was dying regardless of whether VAD existed. When he decided he'd reached his limit, VAD meant he didn't have to wait for MND to decide what happened next. It gave him back some of the control the disease had taken away, and for that I'll always be grateful.
Listening to families
Something else stayed with me from the National MND Conference in Adelaide in September 2026. I listened to Mark Butler's keynote and came away feeling that it hadn't shown much understanding of the problems families are actually dealing with. That's how it landed with me, as someone who had recently been through this with Shane and Mum.
I really wish he had stayed for the lived experience discussions that followed. People were sharing what MND had meant in their lives, from different perspectives. I wanted him to sit and listen to those stories and understand the people behind the names, applications and policies.
As the federal Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme, he has responsibilities that affect these families directly. I came away wanting less justification of the policies and more willingness to hear where they aren't working, then use that position to help change things.
It felt like chalk and cheese compared with Blair Boyer, South Australia's Minister for Health and Wellbeing, who spoke the day before. My impression was that he was willing to learn about the challenges without pretending to understand them intimately. I remember him talking about a friend who had died from MND. That isn't the same experience as living with someone and being involved in their care every day, but it is a personal connection to the disease. Perhaps that helped him speak about it in a way that felt more understanding to me.
I don't expect a minister to know exactly what it's like for every family. I do expect them to listen to the people who do know, especially when those people are right there in the room. Their stories need to help shape the policies and services they're relying on.
What I want people to understand
Since Shane died, I've spoken publicly about our family's experience because I don't want the difficult parts of his journey to disappear with him. We can't change what happened to Shane, but perhaps talking about it can make things a little easier for the next family.
Shane had already been approved for VAD before the care crisis helped bring him to the point of deciding to use it. We supported him, and we also wish he and Mum had received the help they needed. We can't know whether better care, earlier access to technology or different services would have given him more time he considered worthwhile. It would be wrong for me to pretend I know the answer.
Good palliative care and appropriate support should be there. VAD, for those who are eligible and decide it's right for them, shouldn't be treated as though it represents a failure of palliative care either. We need to respect the person who wants every possible day and the person who decides they've reached their limit. Neither should feel pressured towards a decision they don't want or have to justify it just to make the rest of us more comfortable.
For regional families, distance changes things. Regional Victoria is home to around a quarter of the state's population. Nationally, around 27% of Australians live in rural and remote areas. That's a lot of people whose needs have to be considered when decisions about services and policy are made.
A system that may work when there are several practitioners and services within a short drive can be very different when they're scarce and every appointment means significant travel. Telehealth won't fix shortages of doctors, carers, occupational therapists or palliative care services, but it could remove some of that travel. Better information could help families find services that already exist. These things wouldn't have cured Shane's MND, but they could make life easier for the next family.
Shane deserved good care, palliative care and the support to remain at home. He also deserved to decide for himself when his suffering had become too much. Those things should never have been in competition with each other. He was fortunate that, in the end, he could make his choice and die peacefully at home. But getting there was much harder than it should have been.
I'm sharing his story because access to compassionate end-of-life care shouldn't come down to your postcode, how persistent your family is or whether you happen to find the right person at the right time. Families dealing with terminal illness already have enough to fight.
They shouldn't have to fight the system as well.