Assisted death the 'right thing to do,' but takes emotional toll on sister left behind

Michele Jack helped her 49-year-old brother, who had mantle cell lymphoma, end his life under Canada's new assisted dying law. Here she talks about horror, and the honour, of being there for the brother she loved.

'He was brave and strong. I can't imagine being as brave as he was, taking that medication'

In the Yukon, an assisted death can take place at home without a doctor being present, after obtaining approval. Wayne Roberts received assistance from his sister, Michele Jack. (Courtesy of Michele Jack)

Michele Jack keeps coming back to what it was like to mix the cocktail of medication her brother had to drink to end his life. The purple hue. The terrible taste.

Her story is about a different type of grieving, opened up by a change in Canada's laws. It is the struggle of someone who has helped a loved one with terminal cancer end his life.

A pharmacist had given Jack and her brother a liquid along with different packets of crystals to mix together. She was told to add flavouring. She opted for grape.

"It didn't mix well, so it took about 25 minutes of shaking to mix it. Which was hard. Because you know what you're shaking. You know what you're mixing. And you know what it's going to do. It's going to relieve him of his pain and suffering, but it's also — it's so final."

The result, she said, looked like "really bad cough syrup."

The ambivalence of that moment — knowing she was helping her brother, Wayne Roberts, but heartbroken by the finality of what would happen — has continued in the month since his death.

It was clear Roberts wanted an assisted death. The siblings had nursed their mother through a slow, painful end after she was diagnosed with cancer. Roberts didn't want that for himself.

There was something else, too. The 49-year-old believed he would be one of the first in the Yukon to die this way. He had spent his life hiking and mountain biking and was fiercely proud of the trail he'd cleared near Whitehorse that had become an internationally recognized destination.

Facing his end, Roberts wanted to make assisted death better for those who would follow him.

"He was actually — the wrong words are excited or happy," said Jack, "but he really liked the fact he was a pioneer in this."

Roberts sits on his deck in Carcross, Yukon, with Jack. (Courtesy of Michele Jack)

Roberts followed all the rules, filling out the forms and getting approval from two independent doctors. A pharmacist explained procedures and answered questions before sending the family home with the necessary medication.

The federal government isn't tracking national data yet, but provinces and territories report well over a hundred Canadians have opted for a medically assisted death since a law was passed in June. Many choose to die in hospital, but the law also allows patients to die at home. In some provinces and territories a doctor must be present. In others, like the Yukon, it's optional.

Roberts wanted to die in his home with its beautiful view of Bennett Lake. His dog, his sister and his girlfriend were the only ones there.

"It was, I guess, as good as it could be," Jack said.

The plan and the questions

Roberts chose Saturday, Aug. 20, to die. His sister remembers waking up to a horrible day, rain pouring down.

"Are we carrying on with the plan?" she asked him.

He said he didn't know yet.

She went for a walk and took a nap. Roberts took a shower.

He had first been diagnosed with mantle cell lymphoma in 2012. A stem cell transplant gave him a 2½-year reprieve, said his sister. But in December 2015 the cancer came back.

Roberts loved the outdoors and led mountain biking tours. He was responsible for the early development of the trail known as the Mountain Hero, which was designated an 'epic trail' by the International Mountain Biking Association. (Courtesy of Michele Jack)

Transfusions had given him temporary bursts of energy. Sometimes, he would still get back out on his mountain bike. Now, though, the cancer was in his bones. Masses were growing other places. There was a buildup of fluid in his legs.

There was medication for the pain, but Jack said the doctor warned there would soon be a "crisis"— bleeding, difficulty breathing or pain that was no longer manageable. It would likely send him back to the hospital for good.

Still, Jack said, everyone had been clear with her brother that he could change his mind about assisted death at any time.

She asked again if he was ready. It was hard to get the words out.

"It totally is [hard]. It's not like, 'Would you like toast for breakfast?' But at that point he was totally strong and firm and ready."

First, he took pills prescribed to settle his stomach and relax him. An hour later, it was time for the purple mixture.

He told her it tasted awful.

"His words to me are 'You have to make this for the next person. You have to help them make this taste better. This is not OK.' So I promised I would do that."

Roberts on his back deck overlooking Bennett Lake. (Courtesy of Michele Jack)

But Roberts still had the drink to finish. He'd been instructed to do it quickly.

"You have to drink that drink in four minutes. So you have to be, as the person helping, saying, 'You've got to keep drinking. You have to drink this.' And again you know what they're drinking."

He finished it.

"He was brave and strong. I can't imagine being as brave as he was, taking that medication."

She figures it took about 20 minutes for him to lose consciousness. Three hours for him to die. At one point she had to call a community nurse and administer additional medication.

"It was awful to be there with him, and it was an honour and wonderful to be there with him."

'It has to be that hard'

Jack said she has already met with the hospital twice to see what they can do about the taste of the mixture.

There are other questions that keep running through her mind: Was it the right time? Was it the right way? Did we do everything he wanted? Was it peaceful enough?

"Yes, it was the right thing to do. But you know, these early days, I just keep tossing this around."

To others who might be considering the same path, she recommends having lots of support and asking doctors and pharmacists as many questions as possible. ​

Jack said she doesn't feel regret. But it is still a struggle. And she's not sure how to make it any easier.

"I think it has to be that hard."

For more compelling stories about the assisted dying debate in Canada, watch the documentary Road to Mercy on CBC Firsthand on Thursday, Oct. 6 at 9 p.m. on CBC Television.