An Ontario woman is sharing her story of living with an incurable disorder to help explain why she and others want the federal government to make medically assisted death easier to access.
The government has been given until the end of March to amend the medically assisted death law to include people who do not have terminal illnesses, matching a new law in Quebec.
Justine Noel wants to see the law changed so she can legally end her life. Fibromyalgia has left her bedridden for most of the day, as something as simple as standing up can cause her significant pain. It is not fatal, but it is resistant to treatment. It’s also “unbearable,” she told CTV News.
“Every single doctor you go to, you’re told there is no cure, there’s barely a treatment, you’re not going to get any better, you just have to learn to live with it – and some people can’t learn to live with it,” the 27-year-old woman said in an interview at her townhouse in Niagara Falls, Ont.
Noel has applied for assisted death twice, but was turned down both times. Ontario’s laws require not only intolerable suffering, but also a foreseeable death in order for assisted death to be granted.
“I have tried everything. I can only wait for them to invent a treatment – and that takes years,” she said.
“There is nothing remotely promising out there.”
If she lived one province over, though, she would be able to seek the medically assisted death that she wants. Quebec’s Superior Court ruled in September that it is unconstitutional to only offer assisted death to those whose deaths are foreseeable.
The federal government has said it will not appeal the court’s ruling, instead amending the law so that any patient whose suffering cannot be relieved will be eligible for assisted death regardless of which province or territory they are in.
Noel is worried she might not survive the nearly four months between now and when the amended law must come into force. She says her biggest fear is dying by her own hand – an option some other patients are choosing as they wait for the law to change.
“That just should not happen, but it is a sort of horrific choice that folks like her have to make until the legislation is amended,” Jim Cowan, the former senator who now chairs Dying With Dignity Canada’s board of directors, told CTV News.
Others are concerned that allowing fibromyalgia patients the right to die will make the medical community feel less urgency when it comes to researching potential cures. There are already a few treatments that are effective at improving the lives of some patients.
“We have treatments that help reduce pain or manage your pain levels,” Jacqueline Fraser, founder of the Fibromyalgia London Group advocacy organization, said in an interview.
“That is the hope, that is what we advocate for – that our three levels of government take fibromyalgia more seriously, pay more attention to it by allocating funds to support research.”
Noel doesn’t expect to live long enough to see any current research bear fruit. She says nothing currently used in Canada can help her.
“I have tried every treatment that’s available to me in Canada,” she said.
“None of them have really done anything. There’s a whole box of medications that just did nothing.”
Her partner, Jason Le Blanc, has kept track of the more than 30 drugs Noel has been prescribed. Over the past four years, she’s gone from being able to work nearly full-time hours to spending almost all her time lying on her back – and he’s watched on with frustration at his inability to get her any help.
“I have come to understand that [dying] is something that she wants to do, and I believe she has the right to make that decision for herself,” he said.