Ending the stigma around medically assisted death

This is part of a series from CBC's Information Morning where Halifax health-care consultant Mary Jane Hampton discusses her "health hacks" — ways to make your experience with the health-care system better.

Some Canadians with terminal illnesses are faced with a tough choice: do they continue living in pain, or do they seek medically assisted death?

That was a question that Mary Jane Hampton's mother had to answer after she was diagnosed with terminal cancer.

Hampton is a health-care consultant and a columnist for CBC's Information Morning.

"I never thought when we started these health hacks that I would be talking so intimately about my mother's wonderful death," Hampton said.

"But it was, and I think it's really important given all of the fear and stigma around death and dying to talk about this stuff."

Hampton described her mother's recent death as "wonderful" because it was on her own terms.

Cancer treatments had been going well, she said, but when a second cancer cropped up, her mother quickly made the decision to end her life.

"The first thing that needs to be said upfront is that choosing a medically assisted death isn't a failure of the rest of the health system," said Hampton. 

"Palliative care was great. Cancer treatment was great. It really is a choice that is, thank goodness, now available to people when they meet certain criteria."

Pursuing medically assisted death

Those who want a medically assisted death need to be over the age of 18. They also need to have a terminal illness where death is fairly imminent, and they need to be suffering in an unbearable way.

Hampton said the level of suffering is subjective.

"My mom wasn't in anguishing pain. Her suffering in an unbearable way was that she just didn't want to lose dignity in her last days, and so that became her choice," she said. 

"So what you need to do is, first of all, have a conversation with your health-care provider, and let them know that this is the path that you want to take."

After consulting with a health-care provider, people pursuing a medically assisted death need to make a written submission to the Medical Assistance in Dying program.

This submission is essentially a form that confirms the patient understands their circumstances and the decision is being made in complete clearness of mind, said Hampton. 

Where it can get tricky, she said, is that the form needs to be signed by two witnesses who aren't family members, beneficiaries or health-care providers.

"For us, actually, it became a bit of a challenge finding those people, because when you're in the throes of such intimate planning the last thing you're thinking about is two people outside your circle," she said. 

"They don't need to agree with your decision. They just need to say that the signature on this piece of paper is indeed yours."

After the form is submitted, the patient is assessed by two independent physicians or practitioners, which confirms the diagnosis and ensures the patient is of clear mind.

Then, they can begin conversations about when and where the death will occur: at home, or in a hospital or hospice.

"At that point it becomes the planning of your choosing, and I must say that the people in the program are incredibly, incredibly accommodating," she said.

Other challenges

Hampton said the current legislation in place for medically assisted death isn't perfect.

After going through all the assessments, consents, approvals and signatures required, the patient still has to confirm they want a medically assisted death right before they die.

"If you aren't able to say that — if you've had a stroke, if you have deteriorated so much, which was probably your greatest fear — then the choice to have a medically assisted death is taken away from you," said Hampton.

This issue was brought to light last year when Audrey Parker, a woman who had terminal cancer, had to die earlier than she wanted to because she was worried she wouldn't be capable of consenting if her condition worsened.

Before her death — and after — Parker called for changes to Canada's assisted dying laws to allow people who are approved for medically assisted dying to continue with their wishes, even if they lose their mental capacity.

Hampton said that out of the 200 Nova Scotians who opted for a medically assisted death last year, about 30 per cent lost that choice because they couldn't say those words on their deathbeds.

"I'm really hoping that at some point we're able to change that law, and that you can have an advance directive that when you're so clear that that's what you want, that right is actually preserved," she said.

Despite the flaws in the system, Hampton said she was grateful that her mother got to die with dignity.

"It was hard, but it was good," she said.

"We're able to do so many amazing things to bring life into the world and extend it, and being able to offer a gentle death is, I think, a pretty great thing."

MORE TOP STORIES