Out in the Open

'He didn't want to die. But he didn't want to live with Huntington's more'

Having the death he wanted didn’t come easy for Huntington’s disease sufferer John Schreurs, even with Canada’s new medically-assisted death legislation.
John Schreurs did not qualify for a medically assisted death in Canada under the new federal law so he travelled to Switzerland to end his life on September 8, 2016. (Courtesy Erin Schreurs)

Erin Schreurs' late husband John was "one of the most intelligent people" she had ever known, but that was before he began suffering from Huntington's disease. 

After his diagnosis, Erin says John became apathetic. 
John Schreurs (Courtesy Erin Schreurs)

"He was never happy, he was never sad, he was never angry, he was always just neutral...just there."

At first, the disease primarily affected John's mental processes. For instance, he was unable to cope with being unexpectedly interrupted if he was performing a simple task, like opening the mail.

John's mother had suffered from the disease, so the couple knew what toll it would take on their lives as it progressed. They agreed long before John got sick that neither one of them "ever wanted to be a vegetable."

So, when Canada changed its laws around assisted dying, John believed he was on his way to a dignified death in the country where he spent his life. 

"That was going to be his ticket. He was happy. He was proud of his country that they were finally getting into that more liberal way of thinking, and he truly believed that now he would be able to end his life with dignity in Canada."

Once the details of the new law were rolled out, however, John found himself in a legal catch-22. 

"You had to have competency and foreseeable death, which a Huntington's patience will never have at the same time."

Huntington's was ravaging John's mind and body and all he wanted was to die with grace, without becoming a burden to those he loved.

John attempted suicide several times before Erin organized a trip to Switzerland for John, herself and their children. There John was able to get what he wanted.

Erin tells Piya about  the incredible lengths she went to in order to ensure her late husband had control over his own death. 

"He didn't want to die. But he didn't want to live with Huntington's more." 

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This story originally aired on April 30, 2017