Interviews have been condensed and edited.

Sheila Noyes

Sheila Noyes is a former co-president of Dying with Dignity Canada and has been a passionate advocate for the right to assisted death for more than 25 years. She spoke before the Special Senate Committee on Euthanasia and Assisted Suicide when it was formulating the “Of Life and Death” report. A member of Westminster United in Thunder Bay, Ont., she spoke to Bonnie Schiedel.

Q What led to you become an advocate for assisted dying?

A My mother and my sister were the two who brought me into this whole issue. My mother had a brain aneurysm, followed by repeated strokes. At the end, she was completely paralyzed and without speech. I will be haunted all my life by the look of pleading in her eyes [to help her die]. Then my sister’s breast cancer, diagnosed when she was 37, metastasized to her spine, and she asked if I would help her die. Just hours before she died, I promised her, “I will do everything in my power to work towards a change of laws. I won’t stop until the laws change.”

Q Have you ever had any reservations about this issue from a Christian point of view? 

A No. [Assisted dying] is so consistent with the Christian faith. In the United Church creed, we talk about seeking justice and resisting evil. It is an injustice, it is evil, to force someone to suffer against their will.

Q What do you say to people who object to assisted death on religious grounds?

A Because of my faith, I have been strengthened, emboldened and certainly not intimidated by people who are opposed from a religious point of view. I am infuriated by what some churches say is God’s will, or [when] they talk about sanctity of life. Religion has no place in this whole argument. You cannot have a conversation with someone who [claims to] know God’s will for another person. My answer is always: let your faith govern your dying and your suffering, but stay away from everybody else’s.

Q What concerns or worries do you have about legalized assisted dying? 

A None. None! For decades, I have read the research. It shows that vulnerable people are protected by the safeguards. The safeguards are consistent in every country that offers medical aid in dying. I hope that when the law is passed, it will be a Canada-wide law. When I read the report by the Special Joint Committee on Physician-Assisted Dying, I just felt such gratitude and such relief and such hope.

Q Is this a choice you would make for yourself if needed? 

A I am still in treatment for an aggressive form of breast cancer. I was diagnosed in 2013 [before the Supreme Court of Canada ruling], and one of the very first things I did was let my family know that if this went south, I would be going to Switzerland [to seek medically assisted death]. I’m now in a very good place; I’m optimistic. And now that I know I won’t be forced to suffer a terrible death, because the laws of changed, I have no fear.

David Swann

Dr. David Swann, Alberta Liberal Party leader, was a member of a three-person advisory committee set up by the provincial government to seek public feedback on the issue of physician-assisted death. Swann was first elected as a member of the legislative assembly in 2004 for the constituency of Calgary Mountain View. He attends Hillhurst United in Calgary and spoke to Mario Toneguzzi.

Q What is your position on physician-assisted dying?

A Over the last few years, I have come to be much more sympathetic and supportive of the idea of people having greater control over the quality of their lives in their last days and hours. I have personally come to a position where I’m more comfortable with assisted dying than I was five years ago. . . . [Being a doctor] fundamentally shaped [my position]. As I watched people suffering and wasn’t able to do anything about it, I looked for ways to provide both relief to that person and more control over their own process. Nobody should be making that decision [whether to choose an assisted death] for anybody else. It’s a very personal, very spiritual decision. And it’s certainly a medical one and a legal one.

Q What role does your faith have in this?

A As a Christian, and certainly as a physician, the idea of taking life is anathema. But what the real question comes down to — in my experience as a physician of almost 30 years in practice, and as a politician for 10 years — is: am I going to prolong the dying process here or am I going to assist the person in dying in some dignity? It’s quite dramatic when you talk about it as taking life. In fact, it’s not taking away a life, it’s allowing a person to face the inevitable with some measure of control and timing and dignity. It’s [helping] people in severe distress with a situation that’s irremediable. “Why wouldn’t we help them?” becomes the question as a loving Christian.

Q Do you personally know of anyone who would have benefited from an assisted death? And if you were suffering with a terminal illness, would you want an assisted death?

A Sure, I’ve had patients in my own practice who would have benefited. I would want to have some control over how long my own pain and suffering went on and how much I was prepared to extend the quantity of life at the expense of the quality of life. Every doctor is making those decisions every day, and the patients to some extent too: whether or not they agree to a certain treatment, consent to a certain approach, be it surgical or medical. They’re deciding between quality and quantity of life in some cases, and we have to respect that.

Q What worries you most about this issue? 

A I guess the notion of consent, particularly for people with mental illness. Particularly for people with dementia. Consent with younger folks under the age of 16 or 18. People with disabilities of various kinds that may impact their ability to give proper, fully informed consent.

Jordan Cantwell

While The United Church of Canada has not yet formally adopted a position on assisted dying, Moderator Rt. Rev. Jordan Cantwell urged a joint parliamentary committee to consider a number of issues ranging from access to quality palliative care to safeguards for individual consent during hearings last winter. She spoke to David Wilson.

Q Do you personally know of anyone who would have benefited from an assisted death?

A I would say yes. I know of people who have benefited from the compassion of health-care workers who, in order to ease their pain and suffering, gave them enough painkiller that they were no longer in pain. It was also enough to hasten their death. I have spoken with friends who knew people who wanted this. They weren’t people who I knew, but they were close to people I knew.

Q Would you want an assisted death if you were terminally ill and suffering?

A Being relatively healthy now and not in any pain, I can’t really know what I’d want. I imagine I wouldn’t want to suffer, so I would want the option of ending that suffering. But I would hope that I would face whatever I have to face with courage and dignity. What that courage would lead me to, and what dignity would look like in the midst of suffering, I can’t answer right now.

Q As a person of faith, is there anything about assisted dying that troubles you?

A I share with most, if not all, people a concern for the ways in which legalized assisted dying can be abused, especially with people who are vulnerable. We need to do the work necessary to avoid the trap of defining some lives as worth living and some lives as not. That is for the people themselves to discern.

Q It is hard to reconcile your own feelings with your role as a spokesperson for the church?

A There’s a time when I speak as Jordan and a time when I speak as moderator. I spend a lot of time in prayer and reflection, asking for clarity — trying to be very clear about what I feel myself. My thoughts and feelings on assisted dying are shifting. My role on behalf of the church is to listen to what has been said on this, and what is being said, and to reflect our values to the wider community. What I have said so far is a reflection of where we have been. Right now the church is looking at assisted dying, but I don’t know yet where we’re going to end up.

Q When might we expect a definitive position?

A The question is sitting with the theology, interchurch and interfaith committee. I don’t know if they’ve given themselves a timeline. But having sat on the committee myself, I know they are very thorough. It can be a three- to six-year process. But it can be shortened, and in this case it may need to be shortened because of the imminence of the changes that are coming. I think the church is really crying out for direction and leadership. Our hope is that this will be an opportunity for folks to talk about death and dying in a way that they’ve been hesitant to do before. This is a reality for all of us.

Rob Oliphant

Rev. Rob Oliphant is a United Church minister and a member of Parliament. He co-chaired the Special Joint Committee on Physician-Assisted Dying that produced a report with recommendations for legislation.  He spoke to Patricia Clarke.

Q Your committee approves of medical aid in dying in some circumstances. Would you want it for yourself? Or for your mother, if she were to request it?

A It’s not something I anticipate for me. For me, life is an adventure, and I want to see what dying is like. Generally, I would not be a candidate.

As for my mother, I would have to respect her decision. But I would want to be sure it was not because she was feeling that she was a burden, or worried about what her care was costing the public health system, or that she was no longer useful. But usefulness can be redefined, for instance as teaching the value of patience or of unconditional love.

Q Have you known people, perhaps in your pastorates, who would have benefited from assisted dying?

A I have seen people who would have benefited, who were suffering, three or four good candidates, who told me they wanted to die. More people have said they wanted the choice available but were not sure they would use it. Having the option would give them the courage to keep going.

I also have seen many people who have had proactive assistance, cases where doctors have said, “We can help.” That’s why our committee supports a medical model, not a legal model, and why we refused to name and limit the medical conditions for which medical assistance [to die] could be used. Medicine is as much an art as it is a science. This should be a decision that the patient and the doctor reach together.

Q The Bible commands us: Thou shalt not kill. How can you reconcile help in dying with that?

A Assisted dying is not killing. What doctors do is not killing. It is voluntary. Life is good, but death is part of life. Intolerable suffering is not part of life.

I know some doctors disagree and will refuse to take part. Both our committee and the Supreme Court judgment are clear that no one is required to act against his or her conscience. But they are required to refer. The patient’s right to treatment trumps part of the doctor’s rights.

Q If I have a stroke tomorrow and remain a mindless body to be fed and cared for indefinitely, what can these recommendations for legislation do for me?

A Nothing. And I have some discomfort with that. There is no provision for requests in advance or substitute decision-making in our recommendations. Life is precious, and the law has to protect the vulnerable, who cannot speak for themselves.

Q What surprised you about chairing this committee?

A I felt more like a minister than I had in a long time. My theological training and pastoral experience were finally being used in making public policy.

Editor’s note: At press time, Rob Oliphant indicated he could not support the Liberal’s assisted dying bill because it did not, in his view, reflect the breadth of the Supreme Court’s 2015 ruling on the issue.

Remembering Gloria Taylor

By Chelsea Temple Jones

A coffee-stained email printed out three years ago hangs over my desk. Gloria Taylor, the first person in Canada ever allowed to choose physician-assisted death, wrote to me after I interviewed her for a 2012 Observer story. “You are my style of writer,” she wrote, a compliment that stirs up unsteady, anticipatory grief.

“Anticipatory grief” was the term Taylor used to describe the feeling that kept her up until 4 a.m. some nights — anger and turmoil that brought her closer to God. Taylor, diagnosed with amyotrophic lateral sclerosis (ALS) a year before becoming a plaintiff in the 2011 British Columbia right-to-die case, had forgotten I was coming to interview her on that mid-summer Okanagan day. She had to phone her lawyer before we talked. “I thought I emailed her. I probably did, I don’t know,” Taylor said, hanging up the phone. The lawyer asked us to avoid discussing the case. Dodging the argument for death meant talking about life. Tucked into her mobile home’s kitchen, Taylor told me about being a Sunday school kid, a competitive motorcyclist, a foster parent and an employee at many jobs including a group home for disabled adults. She laughed a lot and spoke about her Russian heritage, her tattoos and her new wheelchair.

Taylor also talked about inaccessibility and isolation. Cabbing to church and around town was becoming expensive. She had visitors, but few affordable transportation options. Eating and dressing on her own were increasingly frustrating. In rereading the interview transcript three years on, I realize that Taylor’s swelling anticipatory grief intersected with her new identity as a disabled woman whose social desirability was quietly being brought into question.

Taylor fought her case on the premise that all Canadians should have the choice of assisted dying. But choice is contextual, and the choices we make can shift based on how vulnerable we feel. Shame, loneliness and anxiety about whether the support will be there as our bodies grow more disabled — all are factors that affect our decision-making. I re-read Taylor’s account as less hopeful than I initially realized. She was fearful that her tight network of supporters — including her church community — would irreparably loosen.

The Supreme Court’s confirmation that Canadians have the constitutional right to choose physician-assisted dying that followed Taylor’s death in 2013 has launched me, and other members of the disability community I work with as a researcher and ally, into a particular trajectory of anticipatory grief. Assisted dying is presented to us as a choice. But the proposed Bill C-14, the act to decriminalize medically assisted dying, stipulates that the choice is only available to competent adults. Others, like intellectually disabled people or people with psychiatric disabilities, can’t access this choice.

But even “competent” adults are at risk. They may choose to end their lives for fear of what lies ahead. The very real threats of institutionalization that disabled people face regularly — time spent on psychiatric wards, in group homes, in nursing homes — loom large. Their choices may be laced with anxiety about being absorbed into medical systems that too often frame disabled lives as undesirable.

I don’t begrudge Taylor’s pioneering advocacy. I remember her fondly. Yet, I realize that as Canadians, we are putting a lot of time and consideration into crafting laws that will support people in hastening death. Yet, there is room for more thought about how disability is received in our communities and what this means for our end-of-life decisions. Instead of falling into a trap where we equate disability with suffering, we can focus our energy on radically supporting and desiring disabled people’s lives as we navigate the outcomes of vulnerability and grapple with how we collectively choose to care with, and for, each other.

Chelsea Temple Jones teaches in the School of Disability Studies at Ryerson University.

This story originally appeared in the June 2016 issue of The Observer with the title “A new way to die.”