John and Michelle: Australian law gave our son peace and dignity

John and Michelle: Australian law gave our son peace and dignity

Our son Robbie was diagnosed with motor neurone disease at 34. He was a gym junkie and loved his sport. He was absolutely devastated.

Robbie put up a good fight but he also knew his own mind. He did his research and knew about the option for voluntary assisted dying in other countries. When the legislation passed here in Victoria he brought us together as a family and told us his choice. He said he wanted dignity and he didn’t want to die in bed with tubes hanging out of him.

Of course, it was a hard decision but it was his decision. It was measured. There was nothing spare of the moment about it; it was the biggest decision of his life.

Whenever Robbie talked about his choice, it was all about him. It had to be. We understood it was about what he needed. This disease was robbing him of everything.

He always said to us he didn’t want motor neurone disease to win. He still wanted to be able to say the words “I love you Mum”. And his last words to me [Michelle] were actually “Mum, will you scratch my nose?” – because Robbie couldn’t do that at the end.

Robbie was one of the first people to use the voluntary assisted dying laws here in Victoria. It wasn’t an easy process. There were a lot of checks and legal forms to complete. It’s hard to see how coercion could happen; the whole thing took months. It’s a very carefully considered piece of legislation that gave our son immense peace and dignity.

Robbie organised his own funeral. He chose the songs. He met the celebrant. The words she spoke at the funeral were actually his own words to us. It was very special. He also left us all voice messages. None of us have listened to each other’s; they’re our personal time with him.

On the day it was due to happen, we said “Would you like us to light some candles and put some music on?” And he said “No, open my blinds and put my TV on!” We joked! We laughed. We cried.

I [Michelle] actually said goodbye to him because I felt I needed to say those words, but he said “It’s not goodbye, Mum. We’ll meet again.” So when I made his cards that we handed out at the funeral, I actually wrote those words. Because it’s not goodbye – it’s until we meet again.

He looked so peaceful. He just drank what he had to drink and we sat with him and he slowly went to sleep. There was no more pain. He just looked like our little boy again. He was our baby.

As he died, it was just us, his brother and his uncle. That was it. The doctor came to our house afterwards to sign the death certificate. For people who can’t physically take the medication themselves, like Rob did, then a medical practitioner would be present.

Even as we talk to you now, we can picture it. It’s not easy. But when we think about how much suffering and anguish and stress it took off him, we’re just relieved on his behalf. It’s not about us – it was always about Robbie.

It was a way for Robbie to take control. It gave him peace and solace. It’s painless and reasonably quick. The medicine, which he drank, might have tasted horrible – but we put some good stuff in there for him!

The good thing about his death being planned is that all his friends and family were able to come and visit beforehand. He didn’t miss anyone. Everyone was able to say how they felt about him. We had grown men crying, hugging, kissing each other. Really he left nothing in the tank when he left. It was a really beautiful send-off.

That’s what it all boils down to – the person who is dying can decide what way they want to go. Of course, they can stop the process at any time if they decide they don’t want to carry on. But the decision must lay with the terminally ill person.

Nobody wants someone they love to die. No parent wants to watch their child suffer. But our family has this to hang onto: we got to spend that final time with Rob. Nobody can take that from us.

There’s no law written that every human being has to suffer until the very end. It’s not right to us – morally or ethically.

It may not affect you now, but somewhere down the track it might affect you or someone you love. If you love that person – vote yes.