Just days after Canada's physician-assisted dying law came into force, a 25-year-old British Columbia woman with a degenerative muscle disease is challenging it in court.
Julia Lamb who lives in the Fraser Valley city of Chilliwack has spinal muscular atrophy and worries her body will weaken and she will be left in a state of intolerable suffering because she doesn't qualify for doctor-assisted death under the new law.
"My biggest fear is that if my condition suddenly gets much worse, which could happen any day, I will become trapped," she told a news conference on Monday.
"I feel a shadow looming over me. I know I could lose the ability to breathe well enough on my own and require a ventilator, which could affect my ability to speak."
Lamb was diagnosed with the muscle disease at 16 months and required a wheelchair at age six, but she said she has lived a fulfilling life with a loving family and enjoys her part-time job as a marketing assistant.
The Liberal government's Bill C-14 received royal assent on June 17. Lamb said she opposes the law's requirements that a doctor's help can only be given if death is reasonably foreseeable and the patient is in an advanced state of irreversible decline.
"If my suffering becomes intolerable I would like to make the final choice about how much suffering to endure," said Lamb, who has joined the B.C. Civil Liberties Association to file a constitutional challenge in B.C. Supreme Court.
Grace Pastine, a lawyer with the association, said the law excludes a class of people who are suffering with no immediate end in sight from diseases, such as muscular dystrophy, Parkinson's and Huntington's disease.
A Supreme Court of Canada ruling last year gave people the right to end their lives with a doctor's help when pain management, hospice care and medical treatments have not helped, Pastine said.
"The new legislation has the perverse effect of forcing some critically ill Canadians to resort to violent methods or the back alley. People will find ways to end lives that have become unbearable," she said.
Pastine said the association is asking other Canadians with chronic conditions who want access to assisted dying to join the legal challenge.
Justice Minister Jody-Wilson Raybould said the legislation was a principled, cautious response and she is confident it is constitutional.
"It represents the right approach for Canada at this important time in our country's history by striking the balance between personal autonomy for those seeking access, protection of the vulnerable, and respect for the conscience rights of health-care providers."
The husband of Elayne Shapray, a key witness in the Supreme Court case, said his wife's victory had been stripped away by the legislation.
Howard Shapray said his wife died peacefully at home with a doctor's help in May after her multiple sclerosis became intolerable. She died under the Supreme Court's criteria, which only required a "grievous and irremediable" condition.
"While Elayne had a smile on her lips knowing that she would finally find peace, she died dismayed that others like her would be deprived of the same right by Bill C-14."
Some observers, including Independent Sen. Murray Sinclair, have said the "reasonably foreseeable" requirement is open to interpretation and does not necessarily mean the patient must have a terminal disease.
Asked whether the case would be stronger with a plaintiff whose request for assisted death had already been rejected by a doctor, Pastine replied that Lamb lives every day with the fear of her disease progressing.
She said Lamb could suffer unbearably for years and therefore her death would not be reasonably foreseeable.
Dr. Ellen Wiebe, who is not part of the court challenge, said in an interview that she had been preparing to help another woman who qualified under the Supreme Court's criteria, but restrictions under the new law ended those plans.
Just three days before the woman's intended death, Wiebe said she was informed Friday that she could be prosecuted for taking part. Her patient was extremely upset, she said.
"This is part of the problem with C-14. It is difficult to interpret the foreseeable future issue and I feel terrible about my part in what (her patient) went through," Wiebe said.
"I am willing to take some risks for my patients, but when the lawyer says I am at a high risk for prosecution, I say, 'No.' "
— With files from Beth Leighton