CALGARY — The death of Hanne Schafer was by any definition a nightmare.
Suffering from the painful, degenerative neurological disease ALS, the 66-year-old could communicate only by typing with some of the fingers on her left hand. Her husband had to regularly suction the saliva out of her throat so she wouldn't choke. He had to lift her onto the toilet so she could go to the bathroom.
"She was like a butterfly trapped in a cocoon,'' recalled Daniel Laurin, who on Wednesday won in court the right to make his wife's name public so he could tell her story. "That's the way that she explained she felt.''
"She was like a butterfly trapped in a cocoon."
As horribly difficult as international travel would have been, the Calgary psychologist had been planning to travel to Switzerland to have a physician-assisted death when she learned Canada's Supreme Court had ordered the federal government to come up with assisted-dying legislation.
Patients were told they could get permission from a judge while that was in the works, so Schafer, her husband, and their friend Mary Valentich, a social worker, started making calls.
"She decided to go to court instead of Switzerland,'' said Laurin. "It wasn't an easy thing to do. It was a very difficult and emotional thing for everybody.''
Valentich said despite the efforts of a large group of friends, they were unable to find a Calgary doctor willing to help Shafer die. A doctor in Holland finally put them in touch with Dr. Ellen Wiebe, a Vancouver activist who believes strongly in the right to die and who, on Feb. 29, was at Shafer's side in the B.C. city when her life came to an end.
Dr. Ellen Wiebe is pictured in her Vancouver office. Dr. Wiebe helped Schafer end her life. (Photo: Jonathan Hayward/CP)
Valentich said the hurdles were constant. Getting a pharmacist to fill the prescription for her life-ending drugs was difficult and "even finding a lawyer to take on the case was not that straightforward.''
When they went to court for permission to have a doctor help end Shafer's life, they ran into another snag. She asked for a publication ban on her name, with the intent it would expire at her death.
But Laurin said there was a misunderstanding, and he discovered that after her death the publication ban remained in force. That meant he couldn't even publish her obituary.
"Hanne was very well known here,'' he said. "She did a lot of good work, helped a lot of people. She wanted her story told.''
On Wednesday, a judge agreed to lift the ban, though the court and medical documents in the case will remain sealed.
"She wanted her story told.''
Laurin said he was glad to be able to finally talk about his wife, though he said Wednesday's victory does nothing to erase her loss and the terrible months leading up to her death.
"It should have been easier,'' he said. "Why does a person have to go through that?''
Valentich described her friend as a trailblazer who knew very well that her fight might stand to benefit others after she was gone.
"The way in which she was an agent of her own death was really very moving. It was a peaceful death, unlike some of the other deaths I've witnessed.''
Shafer's husband agreed.
"Hanne was a very bright and very quick lady,'' he said. "Hanne, to me, was a genius. Very, very smart. She knew what she was doing. There was nothing wrong with her brain. She knew how she wanted it done, and when she decided to have it done, she wanted it done as quickly as possible.''
He described with unabashed admiration the long hours of work she put into arranging her death, sitting on the computer for hours tapping out emails and searching for information with the few fingers she had that worked.
She should, he said, have been able to die in her own bed.
"It should have been easier. Why does a person have to go through that?''
Now, he looks forward to continuing his wife's fight.
"I want to be an activist for people who are sick and who are suffering,'' he said adamantly. "It's not right, the way the government is handling this. Nobody wants to get their hands dirty at all. They all want to give it to a committee, and then the committee's going to give it to somebody else.''
It was only at the suggestion that she was lucky to have such a loving and supportive husband that Laurin broke down in tears.
"Well,'' he said between sobs, "I was lucky I had her.''
Also on HuffPost:
Here's a look at the state of Euthanasia laws in Canada and their history.
Suicide hasn't been a crime in Canada since 1972. (Shutterstock)
Doctor-assisted suicide is illegal, although the ruling of the B.C. Supreme Court will force Parliament to alter the law within one year. The Criminal Code of Canada states in section 241 that: "Every one who (a) counsels a person to commit suicide, or (b) aids or abets a person to commit suicide, whether suicide ensues or not, is guilty of an indictable offence and liable to imprisonment for a term not exceeding fourteen years." (Alamy)
Passive euthanasia involves letting a patient die instead of prolonging life with medical measures. Passive euthanasia is legal in Canada. The decision is left in the hands of family or a designated proxy. Written wishes, including those found in living wills, do not have to be followed by family or a proxy. (Alamy)
Sue Rodriguez, who suffered from amyotrophic lateral sclerosis (also known as Lou Gehrig's disease), launched a case asking the Supreme Court of Canada to allow her to end her own life on the grounds that the current law discriminated against her disability. Because suicide is legal in Canada and Rodriguez was unable to end her life because of a lack of mobility, she argued it was discriminatory to prevent her from ending her own life with the aid of another. The court refused her request in 1993, but one year later she ended her life anyway with the help of an unnamed doctor. (CP)
Robert Latimer was convicted of second-degree murder in the 1993 death of his severely disabled daughter Tracy. A lack of oxygen during Tracy's birth led to cerebral palsy and serious mental and physical disabilities, including seizures and the inability to walk or talk. Her father ended Tracy's life by placing her in his truck and connecting a hose to the vehicle's exhaust.The case led to a heated debate over euthanasia in Canada and two Supreme Court challenges. Latimer was granted day parole in 2008 and full parole in 2010. (CP)
Former Bloc Québécois MP Francine Lalonde tried repeatedly to get legislation legalizing euthanasia in Canada passed. Bill C-407 and Bill C-384 were both aimed at making assisted suicide legal. C-384 was defeated in the House 228 to 59, with many Bloc MPs and a handful of members from all other parties voting for the legislation. Tetraplegic Tory MP Steven Fletcher, pictured, made the following statement after C-384 was defeated: "I would like to be recorded as abstaining on this bill. The reason is I believe end of life issues need to be debated more in our country. I believe that life should be the first choice but not the only choice and that we have to ensure that resources and supports are provided to Canadians so that choice is free. I believe, when all is said and done, the individual is ultimately responsible. I want to make this decision for myself, and if I cannot, I want my family to make the decision. I believe most Canadians, or many Canadians, feel the same. As William Henley said in his poem Invictus, "I am the master of my fate: I am the captain of my soul."(CP)