Edmonton

Edmonton man granted right-to-die succumbs to ALS

John Tuckwell, an Edmonton man granted the right to die, died naturally Wednesday morning. On May 6, Tuckwell became one of the first Canadians to granted the right to medically-assisted death.

'He just kept trying, he kept putting his head against it and fighting against ALS'

John Tuckwell and his dog Bruno in 2013. (Facebook)

John Tuckwell always had a twinkle in his eye. 

It never left. Not in 2012 when he was diagnosed with ALS; not when the disease took his ability to walk; and not when it forced him to communicate through electronic means.

No, the twinkle was always there, until the very end.

"He was a great joker, he would come up with things so quickly," said his sister Cathy Tuckwell. "He was very witty. It would just shock you. 

"He was a kind guy and we're all going to miss him very much." 

Tuckwell, a man granted the right to die, died Wednesday morning from natural causes. 

When his home caregiver realized something was wrong, he was taken to the hospital where he began to asphyxiate.

There was little hope at that point, said his mother Lynda Tuckwell.

"The doctor spelled it out that John's wishes were to just be comfortable and, of course, we respected his wishes," she said. 

"He just sank lower and lower and his best friend and I were with him when he died."

'All the decisions were John's'

Before ALS, the 54-year-old used to be very fit, taking only five sick days off work in 17 years.

Tuckwell worked in government communications for years and "took great pleasure in debating, talking and laughing with friends and family," as he wrote earlier in a court document.

He was diagnosed with Bulbar ALS, which paralyzes from the top down, so the first thing he lost was his ability to eat and speak.

I have believed for a long time that we need to offer people the choice of medically-assisted death when they are contemplating end-of-life care.- John Tuckwell

Tuckwell became well known when the Supreme Court struck down the ban on doctor-assisted death last year. He worried legislation would not come in time to help him.

"I have believed for a long time that we need to offer people the choice of medically-assisted death when they are contemplating end-of-life," he told CBC in an interview last month. "My diagnosis made it more urgent for me."  

So Tuckwell took his case to Alberta's Court of the Queen's Bench, winning a decision on May 6. With that ruling, he became one of the first Canadians to granted the right to medically-assisted death. 

"I feel relieved that I have the exemption, given the uncertainty around the issue," he said at the time.

John Tuckwell, who suffers from ALS, offers a unique view of what Bill C-14 will mean for Canadians 1:29

He decided that when the disease took his ability to communicate away completely, he would seek out a doctor who would help him cease to live.

On Thursday, his mother said that to an extent she is relieved that her son didn't have to make such a hard decision as ending his life. 

"All the decisions, all along, were John's. That was going to be the most difficult decision he, or anyone, would have to make. I am just so thankful he didn't have to make that choice," Lynda said. 

He just kept trying, he kept putting his head against it and fighting against ALS.- Cathy Tuckwell

But both Lynda and Cathy say that if John decided that it was his time to go, they would have supported his decision to bring his life to an end.

"It would have been a very hard call to make but we would have stood by and supported him," said Cathy.

"I understood the reason why he would want to do that and I would have supported him in that."

'A human rational thing'

His mother and sister said they were proud of John and what his battle began to mean to other people. 

"One thing that he wanted to do is make sure is that people didn't think that making this call for yourself and having the power to do that was a shameful thing," said Cathy. "It was totally a human rational thing that rational intelligent people would want to do."

He was a fighter until the very end, Cathy said.

"He was not willing to go down easily. He just kept trying, he kept putting his head against it and fighting against ALS."

And all the while, through all the fighting and all the battles — the twinkle remained, they said.

About the Author

Mack Lamoureux is a reporter with CBC Edmonton. He's a lover of strange and odd stories. He counts writing about himself in the third person among his least favourite things to do. mack.lamoureux@cbc.ca, @macklamoureux

With files from Roberta Bell