Inside Gloria Taylor's battle for the right to die

Four days after B.C. grandmother Gloria Taylor was diagnosed with Lou Gehrig's disease, she crafted Plan B — an arrangement for someone to help her die.

The crusader for physician-assisted death, who later became the only Canadian to win the legal right to get a doctor's help to die and put the issue back in the national spotlight, didn't need the plan in the end. Taylor, 64, died last Thursday of an infection caused by a perforated colon.

Taylor never revealed the name of the person who would have helped her achieve Plan B if she had reached the final stages of her debilitating degenerative disease.

But Taylor gave exclusive access to CBC's the fifth estate to chronicle the last year of her life. In the documentary airing Friday night, the investigative TV show takes an unprecedented look at the personal struggles faced by Taylor and her public battle to gain the legal right to die with dignity.

The fifth estate first met up with Taylor last October, surrounded by her family for a Thanksgiving feast in the West Kelowna home where she lived alone.

The mother of two adult sons and grandmother of one said grace before the meal, she thanked God for "yet one more turkey dinner," her family and her continuing mobility. At the time, Taylor was using a walker but still drove her car, a white Toyota, plastered with a bumper sticker that read "Eat Right, Keep Fit & Die Anyways."

About a month later, Taylor stopped driving and in the following months, the degenerative disease persisted in its gradual but relentless ravaging of her body.

"I have no shoulders. I have all sunken in here," Taylor told the fifth estate's Linden MacIntyre during the last in a series of interviews. "My back, the same. There's no meat on my spine. It hurts all the time.

"From my hips to my knees, it's just wrinkled up skin that looks like a whale's hide.… The other day I went to rub my arm and could put my hand between the bones. That kind of thing brings the reality to the forefront."

A former manager of a local trailer park and an avid motorcyclist who spent her 30s riding across North America on a Harley-Davidson, Taylor never expected to become a public figure.

"I always said I was going to be a recluse in my old age," Taylor joked. "You gotta be careful what you pray for."

It was in 2009 that Taylor first noticed a physical problem when her fingers began tingling. A doctor diagnosed her with amyotrophic lateral sclerosis (ALS), and estimated she had a year to live.

"It was a really rude awakening. I sat in the parking lot for over an hour, just numb. I couldn't drive. I couldn't do anything. I couldn't even cry."

ALS, commonly called Lou Gehrig's disease, progressively paralyzes muscles to the point a person can't move, has difficulty eating and breathing, has speech problems and typically dies within two to five years. Cognitive ability remains until the end.

"We always tend to believe, you know, this is somebody else’s story. It’s not me," said Taylor. "The only way I knew about ALS was through the Sue Rodriguez story."

Two decades prior, Rodriguez who also lived in B.C., unsuccessfully fought for the legal right to a physician-assisted death.

In a landmark decision in 1993, Supreme Court of Canada justices narrowly ruled against the terminally ill Rodriguez and upheld physician-assisted death as a criminal offence.

Following in Rodriguez's footsteps was never Taylor's plan. But in the summer of 2011, when she heard on TV that the B.C. Civil Liberties Association was resurrecting the right-to-die debate, she immediately phoned the group.

"It seems to me that you're missing one thing," she told them, "and that's the person who's dying. And I'm it."

Taylor joined the association along with two members of a Metro Vancouver family, who had helped their mother obtain a legal assisted suicide in Switzerland, for the constitutional fight.

The B.C. Civil Liberties Association argued that the world had changed since Rodriguez lost her battle. Places such as Oregon, the Netherlands and Belgium had enacted laws allowing physician-assisted death but ensuring safeguards were in place to protect the vulnerable.

Half a year after a 22-day trial in December 2011, B.C. Supreme Court Justice Lynn Smith ruled on June 15 that the section of the Criminal Code that prohibits physician-assisted death was unconstitutional.

Taylor waited nervously by the phone with Grace Fenker, widow of her friend Peter, who died months earlier from ALS, to hear the news from lawyer Joseph Arvay.

"We won," Arvay said when Taylor answered the phone.

"Thank you, God," Taylor cried.

Holding up a mug in a toast to her late friend, Taylor added, "This one's for you, Peter. We bloody did it!"

While the justice had declared the Criminal Code ban on physician-assisted death unconstitutional, the decision was suspended for a year to give lawmakers a chance to rewrite the law. In the meantime, though, Taylor was granted an exemption that allowed her to have a physician-assisted death, albeit with strict conditions.

Taylor had looked forward to providing the judge with a face "to this ugly disease" but facing the media was more difficult and surreal.

"It just doesn’t seem real because I still look at myself as a small town girl and that’s how I think and feel," Taylor told the fifth estate."I'm just doing this because I feel in my heart that it needs to be done and it's time for it to be done."

She also had to deal with vociferous opposition to physician-assisted death.

Among them was Will Johnston, chair of the Euthanasia Prevention Network B.C., who argued that palliative care already provided assisted dying.

Johnston said there's a "world of difference" between reasonable palliative care in a situation where people want terminal sedation or want to cease being hydrated compared to actively killing the patient or handing them the suicide dose.

"Intent matters in medicine because the consistent fact that I will never try to kill you is actually a part of the doctor-patient relationship that we take for granted right now."

But Taylor never considered such palliative care measures an option.

"Palliative care to me is just doping me out of my mind. I don’t know what’s going on. You call that care? If you cared about me, put me out of my misery."

Her lawyer stressed that he never expected the case to "radicalize Canadian society."

"The sky's not going to fall," Arvay said. "For most of us, palliative care medicine will allow us to get through to the end relatively pain-free and with our dignity in tact. But for a small percentage, there's no remedy from palliative care medicine. And for those people, this will have the most profound impact."

By mid-summer, Taylor was preoccupied with her declining health. She couldn't walk, relied on a feeding tube for nutrition and found it increasingly difficult to get out of bed. Two daily home-care visits allowed her to stay in her own house.

"I live one day at a time," she said. "And sometimes an hour at a time, and sometimes literally a breath at a time."

"I am absolutely not afraid to die," she added. "I'm not in denial that I'm going to die. I know what my options are today to die. Am I prepared to take that option today? No, because life is good today."

Taylor lived with anxiety knowing that the court exemption could be overturned by an appeal.

The government did appeal, but the B.C. Court of Appeal upheld Taylor's exemption. The government later submitted a second appeal to stop the exemption. In March 2013, the B.C. Court of Appeal will hear the full appeal of the government.

Taylor had already started planning for her death in the spring of 2012.

She wanted to be cremated in her blue Tinkerbell pyjamas. A handmade lilac cloth case with two matching ribbons was designated to hold her ashes before they were dispersed in a location of her granddaughter Gabby's choosing, Hardy Falls, a place of happier times.

In her many conversations with the fifth estate, Taylor always stressed that she didn't want to kill herself and didn't want anybody else to do it for her, but wanted the option if needed.

More than anything, Taylor wanted to die peacefully and naturally, at home in her own bed.

"I don't want to take two months to die that my granddaughter's gotta be watching me, laying on a bed, knowing that I'm starving to death," she said.

"I would rather my granddaughter know that, you know, Grandma's gonna die. We've picked a good day. We've picked our favourite day, Sunday, the day we go to Hardy Falls and after this day, the healing begins and Grandma will be there, just a little to the right of the North Star, watching over you and helping you."

Taylor died on Thursday, Oct. 4, surrounded by family and friends.