During a panel discussion June 1, attendees of the national gathering of Anglican spiritual care providers shared their experiences with Medical Assistance in Dying. Photo: Joelle Kidd
This is the second story in a two-part series about the national gathering of Anglican health care chaplains. Read the first story here.
For chaplains working in the health care field, dealing with death and grief is part of offering care. But what changes when death is freely chosen?
This was a central theme as 36 Anglican health care chaplains and spiritual care providers gathered June 1 in Toronto to share their experiences with medical assistance in dying (MAiD).
The panel and plenary discussion took place on the second day of the national gathering of Anglican health care chaplains, the first ever nationally sponsored gathering of Anglicans in health care spiritual care provision.
MAiD was one of the top subjects Anglican chaplains hoped would be addressed at the gathering when asked in an online survey, the Rev. Eileen Scully, General Synod’s director of Faith, Worship and Ministry and the main organizer behind the gathering, says.
It has been legal in Canada for adults to request MAiD since June 2016.
“They need to unpack their experiences of it,” says Scully. For chaplains, “there is but no choice but you provide pastoral care, in all circumstances, you know? Whatever your personal place is theologically, ethically, politically, whatever—it’s the provision of pastoral care.”
The agenda was created to give the opportunity for spiritual care providers to share their experiences and “tell their stories” about MAiD, she says.
The discussion featured a panel of three members of the conference planning team: Canon Douglas Graydon, who worked on the Anglican Church of Canada’s MAiD study guide, In Sure and Certain Hope; the Rev. Joanne Davies, oblate of the Sisterhood of Saint John the Divine and chaplain for St. John’s Rehab at Sunnybrook Hospital in Toronto; and Phillip Murray, former spiritual health leader for Fraser Health Authority in British Columbia.
Graydon first encountered medically-assisted dying during the AIDS crisis. At the time he worked as the full-time chaplain for Casey House, Canada’s only stand-alone hospital for people with HIV/AIDS. Before anti-retroviral therapies, he recalled, Casey House saw, at its peak, “maybe 180 or 200 deaths in one year. That’s a lot of people, when you think there’s only 365 days in a year.”
In the “early days of AIDS, assisted suicide was a common [conversation],” Graydon told the gathering. “These young men were desperate to die. The disease was so catastrophic…they would plead to us to help them to die. It was a daily conversation. And back then, of course, it was illegal.”
It was this experience that helped shaped Graydon’s viewed on medically-assisted death. “By working through those thoughts and experiences, I had…moved within my own heart to understand that assisting somebody to die makes perfect sense.”
Still, he said, he struggled with the physical experience of being present for a death. “In the twinkle of an eye, regardless of how ravaged a body is, there is something there—and then there’s nothing. There’s something there, and then there’s just an object. That has always floored me.”
Being involved in MAiD leaves a “residual moral or ethical stress,” said Graydon. “You can be intellectually in tune with this, but then when you watch somebody die and you walk away, it’s a powerful, powerful experience.”
For Davies, pushing back against a “death-avoidant” culture is an important part of spiritual care provision.
Prior to being a chaplain, her only experience of death was that of her father. In the years prior, she explained, her family avoided using the term. It was when the hospital called her that Davies realized even the health care system shied away from confronting the word.
“Nobody told me on the phone that he had died, nobody used those words,” she remembered. “When I arrived at the hospital, I went to the nursing station and said, ‘My father’s not in his room…can you please tell me where they took him?’ They looked at me, and…said, ‘Oh, we’re very sorry—your father’s gone.’
“I said, ‘Gone? Well, where did he go?’ They were alarmed…and they still didn’t tell me. They said, ‘He’s downstairs.’”
It was when Davies began working as a chaplain in a hospital that performed late-term abortions that she first confronted the reality of providing spiritual care while a patient weighed decisions about death. Still, she says, in the hospital there was an avoidance of directly speaking about death by using terms like “termination.”
Phillip Murray recalled his experiences as spiritual health leader at the Fraser Health Authority in British Columbia. “I was working there for about a year when medical assistance in dying came along,” he said. He was asked to be part of the main leadership team tackling the issue.
“We were incredibly unprepared…the legislation passed on June 15, on a Friday, and on Saturday morning at 9 a.m. was the first case in one of our hospitals.”
Murray says he found himself overwhelmed by “thoughts and feelings and uncertainty,” wondering about the “cosmic implications” of MAiD. “What is the impact—by facilitating the death of this person in this way, what are we stopping from being able to happen? What healing are we stopping from being able to happen?”
For a four-month period, Murray attended every MAiD procedure. He began to understand the suffering that patients were experiencing as “spiritual in nature.”
“It wasn’t an issue of pain; it wasn’t an issue of discomfort—it was the lack of control. It was the lack of independence. It was the relying on others to do the basic functions of life.”
Eventually the burden of being the only spiritual care provider in the system and being unable to address the “spiritual suffering” that he saw made continuing in the position untenable.
“As I reflect on my experience with MAiD, there are three things that I know for sure,” Murray told the group. “The first thing that I know about this reality is that it’s extraordinarily complex, extremely complex. It’s not a decision that is taken lightly, it’s not a decision that is taken easily.
“The second thing that I learned is that there is suffering. The folks that are asking for this are really suffering, and as I said, the suffering is not so much physical suffering as spiritual suffering…we wouldn’t be dealing, in a way, with medical assistance in dying if we weren’t so excellent at medical assistance in living. Everyone who is in this situation at some point in their life’s trajectory has made a decision to receive a treatment or receive a procedure that prolongs their life.
“The third thing I know, and this is probably more of a belief thing, is that God is with us in this. God is with the patients; God is with the care team. And I believe this in the core of my being.”
There is something powerful, Murray added, “when people know the time of their death, and they can prepare for that, and they can have those conversations and know that this is the end.” Yet, “It doesn’t make things easier. I still live with the stress.”
Murray said that he carries a lot of sadness and distress from his time working with MAiD.
The impact of MAiD on the staff that carries it out was a topic addressed by many of the health care chaplains in a time of response after the panel discussion.
One attendee noted that in Manitoba, MAiD procedures are performed in different hospitals and care homes by a MAiD team that moves throughout the province. “So there’s spiritual care for the staff of the facility, but who cares for the team when they’re doing that, when they’re always on the move?”
Another noted her compassion for doctors and nurses carrying out the procedures. “There’s so much denial, and having difficulty with saying the word ‘die’ or even the concept of bringing about death, because that’s not what they’re trained to do…when they come in as doctors and nurses, they are not coming in to bring about death.”
After the procedure is performed and the patient’s suffering is over, said Davies, “the suffering remains in the hospital with the staff…the staff that have to watch, and they have to see the body come out—the distress and the suffering actually are held by the staff, which is why I feel there needs to be more conversation on bereavement, and why spiritual care needs to be [part of it].”
MAiD is also a “complicating factor” in how families deal with grief, Murray noted. “There’s a different dynamic when a loved one dies of MAiD” that may not be met by a traditional support group.
MAiD is not a new concept, Grayson said. “The healthcare profession, human society, has been assisting each other to die since the beginning of time. The only thing MAiD did was push the conversation out into a more public and focused realm. In palliative care you have these conversations—do you continue treatment? Do you withdraw treatment?… Do we pull back on interventions that cause suffering? The same conversations in ICU, the same conversations in pediatric wards, so on and so forth. But they’ve always been very private conversations.”
Many of the conference attendees expressed a desire for spiritual care and a pastoral response to figure more prominently in discussions surrounding MAiD and within hospital care teams. “As spiritual care providers, how do we ask the church to support that goal, that this is what we do really well?” asked one chaplain.
“I suggest that congregations just simply start talking about it,” said Graydon, noting that conversation groups on the topic (often called “death cafés”) are increasingly common, and suggesting the use of the In Sure and Certain Hope study guide as a resource.
“The church is a great place for that kind of [conversation] to start. It really is.”