One family's long journey to a peaceful death

VAD has been available in South Australia since January 2023. But the law came too late for some. Sarah Gilbert tells the story of accompanying her father, David, to Switzerland. 

My brothers, Scott and Dan, and I never could have imagined that we would end up travelling to Switzerland so that our father could have a peaceful death. 

My dad, David, was diagnosed with Motor Neurone Disease (MND) in 2021. 

It started with small things—off balance, a limp in Dad’s left leg, then his foot began to drag and he couldn’t walk long distances. He stopped walking the dogs and by late 2020, stiffness crept into his movement. His mental health declined at the same rapid rate as his body. He was losing the things that made him himself —his independence, his pride in being fun and full of life.

Dad had always been fit and active. In retirement, he found a new love for golf, and was proud of the fact he looked young for his age -he would joke that he was George Clooney’s twin. He had a quick, cheeky sense of humour—sometimes wildly inappropriate, but always hilarious.

But as his body began to betray him, his sparkle started to fade.

He spent months in and out of doctors’ offices, undergoing every test imaginable. The thing about MND is that there is no single test for it—just the slow, painful process of ruling everything else out. We clung to hope, desperate for another explanation, but as time passed, those possibilities disappeared.

On May 7, 2021, I drove him to the neurologist. The car ride was quiet, heavy with the weight of what we feared was coming. After the appointment, Dad gripped his walking stick, moving slowly toward the car. Before he even spoke, I knew.

“It’s not good,” he said softly. “I don’t know if I should tell you while you’re driving or wait until we get home.”

I pulled over and he said the words that shattered our world. My family suddenly found ourselves living another nightmare

In 2018, my brothers and I had already lost our mum [Karen] to breast cancer at age 58. She fought with everything she had, but cancer is cruel. It was horrendous, watching her fade and being powerless to stop the inevitable. I never wanted to see it happen again.

Dad was already talking like he couldn’t face what was ahead.  As I wrapped my arms around him, it was the first time I noticed how small he felt, how much weight he had lost. We clung to each other, his whole body shaking as we cried, shocked by our reality.

In the weeks that followed, we watched MND take hold. The falls became more frequent—Dad fell at home, in coffee shops, in the street, trying to get out of the car. One time, he hit his head so hard he needed stitches. 

I want to go to Switzerland

The day he collapsed trying to get out of bed, his legs completely seizing up beneath him, I knew things would never be the same. I woke to him calling my name from the next room and found him on the floor, half-dressed, shaking from shock. He lost a part of himself with every blow. 

My brothers and I took on the role of Dad’s carers to help him do the simplest things—getting dressed, putting on his socks, getting in and out of the shower. And then, one day, he said it out loud.

“Sarah, I’m done. I don’t want to do this anymore.”

I knew exactly what he meant.

“I’ve looked into euthanasia,” he said. “It’s not legal here, and I’m not eligible anywhere else in Australia.” He paused. “But it’s legal in Switzerland. I want to go to Switzerland.”

Once his decision was made, you could see how he let go, knowing the suffering was almost over. As surreal as it was, he was himself again. 

We spent the most special last few days together

On December 5—his birthday—we boarded the flight to Switzerland, in the middle of winter, and a pandemic.

The journey was an enormous undertaking. Dad was so weak, so navigating airports, long flights and getting around a European city was tough. My brothers would lift him in and out of plane seats, taxis, and beds, wheel him through the cobblestone streets and carry him up and down snow-covered stairs. 

If another week had passed, I don’t think Dad would have been able to travel. Once in Basel, Dad was lighter and at peace. For the first time in over a year, we had our Dad back. We spent the most special last few days together, which we will cherish forever. He was still dying, but the fear and suffering were gone.

There was so much love, and the closeness of our family was further cemented during this time.

On December 9, we arrived at the lifecircle centre in Basel. It wasn’t cold or clinical like I had feared. The staff were warm and kind and it felt like someone’s home. Still, the anxiety that had been building in my chest reached its peak.

When it was time, we helped Dad onto the bed. My brothers and I held each other as we took turns saying our final words to him, holding his hands, telling him how much we loved him. He told us how much he loved us and how proud he was to be our Dad. Through tears, we told him it was okay. That he could go to be with Mum now.

And in true Dad fashion, he recited his favourite joke—his humour shining through until the very end. We laughed amongst the tears.

When he was ready, he administered the medicine. We stood together as we watched his breath slow. And then, it stopped. He was at peace. 

If MND had taken him, it wouldn’t have been this way. Instead, he got to choose to leave with dignity, the way he wanted to.

But we should never have had to go to Switzerland. The travel was logistically difficult, expensive and emotionally exhausting. Flights, accommodation and the fees added up to thousands. The hardest part was knowing we were taking a one-way trip with our dad and that we would be returning home without him.

It is not about choosing death. It is about choosing dignity. 

If he’d been diagnosed only a few years later, we could have had VAD at home in Adelaide, where it became legally available in January 2023. 

VAD is so important. It is not about choosing death. It is about choosing dignity. 

I share this story in the hope that it reminds people how precious life is, and how precious these VAD laws are. For those suffering from terminal illness, choice should be a fundamental right. Just as we choose how we want to live, people whose lives have been stripped of them from illness deserve the right to choose how it ends.

We are so proud of Dad for making the decision he did and I am proud to be able to share my story in the legacy of both my parents.