‘My dad gave us a gift’

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Daughter opens up on father’s medically assisted death

Jen Wiles, far left, and Shanaaz Gokool, CEO of Dying with Dignity Canada, second from the right, pose with other speakers ahead of an end-of-life speech on Saturday, June 2, 2018.

By Zach Laing

As with thousands of other Canadians, Robert Wayne Nelson had the chance to die on his own terms.

Nelson’s earlier diagnosis of Parkinson’s disease was enough to handle in the years leading up to his spring 2016 diagnosis of progressive supranuclear palsy — a disease his daughter, Jen Wiles, described as Parkinson’s “evil big brother.”

Doctors didn’t know what to do. The severe brain disorder holds no effective treatments.

However, as a biologist throughout his life, the then-71-year-old had always followed legislation surrounding medical assistance in dying.

“My dad was the first medically assisted death in our community,” said Nelson’s only daughter, Wiles, of her father who died on Feb. 15, 2017, in Camrose.

“He really understood that there was a place for this — not that he ever thought he would use it.”

In February 2015, the Supreme Court of Canada ruled in Carter v. Canada that parts of the Criminal Code prohibiting doctor-assisted death would need to change to satisfy the Canadian Charter of Rights and Freedoms.

The ruling opened the door for medical assistance in dying and on June 17, 2016, federal legislation allowed people to die on their own terms, under certain circumstances.

In October 2017, Health Canada released numbers showing there were 2,149 medically assisted deaths in Canada between Dec. 10, 2015, and June 30, 2017.

As of April 30, 2018, Alberta Health Services reported 364 Albertans had received medical assistance in dying — of those, cancer, multiple sclerosis, ALS and advanced lung disease are the most-cited health conditions.

Those who wish to end their life on their own terms must have a grievous and incurable condition. Then, they have to make their initial request before two required assessments, followed by a 10-day waiting period — one that can be waived.

Wiles said their fight for her father to undergo doctor-assisted death was a challenging one.

“We didn’t have community support because of our faith-based community, which was really challenging,” said Wiles.

Robert Wayne Nelson pictured in an undated photo, died with medical assistance on Feb. 15, 2017.

“It was really hard to find assessors in central Alberta.”

It took nearly a year for Nelson to get his wish of assisted death, but it was something that left his family at peace.

“Despite the fact that we went through this really challenging couple of months … for us, it was really good,” said Wiles.

“The outcome for our family was positive — it was what he wanted. After his death we felt good, which is a strange thing to say. We did everything with him. We went to the funeral home, we picked up a column burial together, we did all this stuff with him.

“Through all those months, we came to a place that was really kind of beautiful and we have felt good since. We were able to really grieve ahead of time. He was relieved, we were relieved. We got up the next morning and we felt good.”

Knowing he was able to go out on his own terms only help the family he left behind.

“He did not want to go into palliative care, he did not want to see the end of his disease process,” she said.

The day after Nelson died, Wiles’ mother went to her coffee group sharing the story of the day before.

There, a woman who lost her husband nine years prior to a terrible battle with cancer wept openly as she wasn’t able to be over the trauma of his death.

“My dad gave us a gift — we didn’t have to watch that suffering,” said Wiles.

“He already couldn’t write, couldn’t read, he couldn’t be on the computer, couldn’t talk on the phone. All the beautiful things he did with his life, he couldn’t do anymore.”

Shanaaz Gokool, CEO of not-for-profit Dying with Dignity, explained ahead of a Saturday speaking event marking two years since the practice became legal how the process can be different for everybody.

“The more precarious your health is, the greater chance you have of losing capacity and therefore you can lose the right altogether. Medical assistance in dying is a life-affirming treatment,” she said, noting in communities that are less prepared, it’s more difficult to find support.

“Assisted dying for those left behind can be the gift of no regret.”

For those in small communities like the one Nelson lived in, the process for medically assisted death can be a frustrating one.

However, those living in major centres like Toronto can go through the process start to finish in one day.

Gokool said the next step for the country is looking at opening up the legislation to make medically assisted deaths easier and more accessible.

“The problem is that the legislation uses deliberately vague language and it excludes many hundreds and possibly thousands more. We have different interpretations from one end of the country to the other in terms of the eligibility criteria,” she said.

“Then we have different access issues people are having — hurdles and obstacles in their way.”

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