By the time 68-year-old Carolyn Sitlington was to be given a death-causing drug at a London, Ont., hospital on July 5, 2016, the pain from her Amyotrophic Lateral Sclerosis, or ALS, had become considerable.
Her husband, Dave, remembers her getting two or three small doses of morphine through her feeding tube, as she lay in her bed the night before.
And yet physical pain, he says, was never the main reason for her decision to opt for physician-assisted dying. “I truly believe the mental pain was even greater.”
ALS, a disease for which there is no known cure and few forms of treatment, causes the gradual paralysis of those who suffer from it by attacking the ability of the brain to communicate with muscles. According to the ALS Society of Canada, 80% of people with the disease die two to five years after being diagnosed with it.
In Carolyn’s case, the disease had first begun to show itself in the form of mobility problems with her left leg in fall 2011. By 2014, she was confined to an electric wheelchair; through 2015, swallowing became more and more difficult for her, Dave says, necessitating a feeding tube. When it became impossible for her to talk, she began to use software for her phone that would speak back words she typed in with her right hand, the last of her limbs to remain functional.
When Carolyn could no longer use her right hand, she was still able to communicate, using a special device that allowed her to select letters on a computer screen with a glance of her eyes. She was also able to shake or nod her head until the end. But losing the use of that hand seemed to deal Carolyn a final blow.
“Once she lost the ability to do that, in early 2016, it was getting to be very tough for her to, I guess, accept life as it was,” Dave says. “She felt absolutely useless… She couldn’t talk. She couldn’t move. She couldn’t contribute to anything.”
Since her diagnosis in May 2013, the Sitlingtons had had discussions about assisted dying. Carolyn told Dave that if it ever became possible in Canada, she would eventually choose it.
By June 7, 2016, when Carolyn had an appointment with her doctor for regularly scheduled tests, Bill C-14, legislating physician-assisted dying in Canada, had been passed in the House of Commons and was being debated in the Senate. The Sitlingtons decided it was time to ask their doctor about it.
The doctor, Dave recalls, “looked right at Carolyn and she said, ‘Is it time for us to have that discussion?’ And Carolyn nodded.”
She explained the options open to Carolyn, and eventually they made an appointment for the following month. On July 4—by which time Bill C-14 had become law—Dave, Carolyn and their daughter, Sarah, arrived at the hospital. He, Carolyn and other family members, Dave says, had spent much of the previous few weeks in the rigorous process of completing the necessary paperwork. They were put up in a private room, where they all stayed the night. In the morning, they were joined by other family members and friends, including Carolyn and Dave’s three-year-old grandson, as well as their priest, Canon Keith Nethery, who was then the rector of the parish of Holy Trinity St. Stephen’s Memorial, London, Ont., diocese of Huron. (Nethery is now rector of St. James Westminster, also in London.)
Prayers, Holy Communion on appointed day
As they prepared to give her the injection that would end her life, hospital staff asked Carolyn if it was still what she wanted, and she confirmed that it was, Dave says. Nethery gave Carolyn, Dave and the other family members Holy Communion, and led them in prayer. Some of those who had gathered then left the room, and hospital staff gave Carolyn two injections, Dave says: first an anesthetic, and then a drug to stop her breathing.
Carolyn died some 10 or 12 minutes after the first injection, Dave says.
“She just lay there and she just went to sleep. It was so peaceful,” he says.
Dave says neither he nor the rest of his family regret supporting Carolyn’s decision.
“It’s what she wanted, truly wanted,” he says. “And because of those wishes, it’s what we wanted for her, too. We didn’t want her to continue suffering, just sitting there, day after day.”
Nethery, who has known the Sitlingtons for more than a decade, says that, once Carolyn had made her decision, she and Dave spoke about it with him at length. They believed it was not God’s will for Carolyn to continue suffering. They also, he says, wanted to discuss the things that people in end-of-life care often want to talk about: God, heaven, resurrection, being reunited with beloved family members who have died. It was also very important to them that they have a priest to accompany them through the process, he says, to visit them and pray with them as Carolyn’s appointment approached, and to be with them and offer Holy Communion on the appointed day. “They made a decision that they were comfortable with in their faith, and they wanted a priest…to make that journey with them,” Nethery says.
In its latest report on medically assisted dying in Canada, released last October but covering the period from December 10, 2015 (when it was made legal in Quebec) to June 30, 2017, Health Canada reported there had been a total of 2,149 medically assisted deaths in the country.
In addition to the Anglican Church of Canada, which released its report on physician-assisted dying in June 2016, and its study guide this March, some dioceses in the country have also been addressing the controversial issue.
Last September, Niagara Anglican, the newspaper of the diocese of Niagara, reported that Bishop Michael Bird had released a set of revised guidelines “to ensure pastoral care is available to those who inquire about or qualify for and claim the legal right to medical assistance in dying.”
More recently, this April, Archbishop Colin Johnson, bishop of Toronto and of Moosonee dioceses, and metropolitan of the ecclesiastical province of Ontario, released a statement on medically assisted dying.
After referring to a Globe and Mail story about another Anglican priest who provided spiritual support during an assisted death, Johnson wrote that he was opposed to the practice “on theological and religious grounds,” and urged readers to choose other options.
While Nethery shares many of the concerns that have been expressed about assisted dying, he doesn’t oppose it “in those very narrow circumstances where death is foreseeable, where there’s no hope of recovery, and there’s a lot of pain and diffculty going forward.” He felt it was important to respect Carolyn’s decision and provide the family with the spiritual support they needed.
“I don’t see my role to influence anyone in that situation one way or the other,” he says. “My role, what God has called me to do, is to go and be present… so that people have someone to journey with,” he says.
Since Carolyn’s death, Nethery says, a small number of other people have asked him if he would provide pastoral care to them if they decided they wanted medically assisted death.
He has not, he says, been present personally at any medically assisted deaths other than Carolyn’s.
This article first appeared on May 3, 2018.