Spiritual accompaniment: Chaplains navigate medical assistance in dying

The Supreme Court of Canada ruled in 2015 that parts of the country’s Criminal Code that prohibited medically assisted deaths were in violation of the Charter of Rights and Freedoms. Since June 2016, medical assistance in dying (MAiD) has been legal in Canada for adults over the age of 18 with a “grievous and irremediable medical condition.” The government of Canada reported in April 2019 that at least 6,749 Canadians had accessed MAiD since the legislation was enacted, with MAiD deaths accounting for around 1% of deaths in Canada during each of the government’s reporting timeframes.

Like doctors, nurses and other frontline health-care workers, hospital chaplains and spiritual care providers see the system up close—with all its flaws, oversights and messy details as well as its beauty and hope. Chaplains may be there from the first time a patient considers MAiD to when the family has been led from the room after the procedure.

As MAiD becomes an ever more available option, for many spiritual care practitioners it has become an important and sometimes difficult aspect of ministry.

‘Spiritual distress’

Anglican spiritual care providers are far from of one mind on the ethics and parameters of MAiD.

Philip Murray, a spiritual health practitioner who now works in long-term care at Providence Health Care—a Roman Catholic-run health organization that operates hospitals, clinics and residential care homes—was working with one of Canada’s largest health-care authorities when the MAiD legislation came into effect. Murray was brought in to support what he says was a system in distress. He suddenly had new roles to play, supporting patients and families who were going through the MAiD process as well as the medical team that was coping with the change.

Many of the chaplains the Journal spoke to for this story noted that MAiD legislation has not had unilateral support from health-care practitioners, as physicians try to balance their oath to “do no harm” with the act of causing a death.

The transition was a “learning experience” for Murray. “Spiritual care, where we focus on supporting people through their emotions, finding meaning in the midst of hopelessness and struggle, it was a natural place for us to be—but a very difficult dynamic for me to be [in], because there was a lot of uncertainty and upheaval.”

He was asked to be present for most of the MAiD procedures that took place at the health authority over his time there. “I’ve been in the room with people. I’ve facilitated ceremony and ritual with families which incorporated the death, I’ve journeyed with families as they said their final goodbyes and left the room,” he says.

When asked how this has affected him, he says it has been for the positive and the negative.

“I’m grateful for the opportunity to be present and bear witness to the love that was present,” he says. Being there taught him that God is with us in everything, he says. “God shows up. Inevitably.”

At the same time, he says, he feels deeply sad.

“I think I’m a little traumatized by the experiences, primarily because of my conviction that the suffering that people are experiencing, for the most part, is spiritual in nature.” While there are times when patients experience physical pain that is just too great to bear, Murray says, his experiences with MAiD caused him to see the suffering that leads most people to end their life as “spiritual and existential.”

People “lose that sense of meaning and purpose” when faced with a future dependent on others for even the most basic functions of life, Murray says. “Being dependent, being a burden, having no hope of cure, but maybe a slow lingering death,” were at the heart of much of the suffering he saw.

What spoke most clearly of this to Murray were the patients whose distress lifted after they received the date for their MAiD procedure; the certainty of their death had alleviated the core of their suffering. To Murray, it seemed spiritual care could offer other ways of relieving that suffering.

There is a benefit, he says, to “working out that sense of I am a burden on my family and society to I am worth being cared for by my family and society, and I am loved. Making that shift at the core of people’s being is profound, it’s huge, and it doesn’t end up being able to happen as a result of MAiD.”

What Murray found most traumatic and demoralizing was “the system’s unwillingness” to recognize the spiritual elements of suffering or to offer spiritual care as a treatment.

Murray says that ideally, he would like to see the health-care system recognize “that when people are in pain and suffering and losing hope, that is a spiritual issue,” one that he says often surfaces long before MAiD becomes a viable option. “My hope and prayer for the health-care system is that they would recognize the spiritual nature of the suffering that people are experiencing and have the ability, the resources to offer spiritual care, because spiritual care does work.”

‘We want to be known not so much by what we are against, but what we are in favour of’

As MAiD became legal, the Rev. Paul Peters Derry—a Certified Supervisor-Educator with the Canadian Association for Spiritual Care who attends saint benedict’s table in the diocese of Rupert’s Land—was coordinator of spiritual care at Fred Douglas Lodge, a United Church-owned personal care home in Winnipeg.

The home housed 136 residents and employed several hundred staff, and it also ran through its parent corporation, the Fred Douglas Society, a supportive housing community with just under 30 residents. As a religious health-care provider, the Fred Douglas Society’s board felt a responsibility to craft a policy on MAiD. Peters Derry was asked to be part of creating the policy.

At the time, he was recovering from his own near-death experience: while undergoing surgery for acute appendicitis, his appendix had burst. End-of-life issues were “not just an academic question for me,” he says.

Because MAiD legislation had not yet been passed, the board decided to write a statement of values that would guide procedure around MAiD requests at Fred Douglas.

“What I said…was, we need to articulate in a positive sense what we are in favour of, what are the values that we want to see honoured and respected,” Peters Derry recalls. “We…[wanted] to model, in a positive way, what it means to be a faith-based health-care facility. We [wanted] to be known not so much by what we are against, but what we are in favour of.”

Under the law, religious-run health-care institutions and practitioners are able to conscientiously object to MAiD. Long-term care patients may be transferred to whichever personal care home has a bed available. If that facility refuses to do MAiD procedures, this could limit access for patients through no choice of their own.

“There’s lots of talk of conscientious objection. What is conscientious support, or conscientious advocacy?” Peters Derry asks. The statement of values he helped write aimed to tell Fred Douglas Lodge patients, “We will walk with you every step along the health-care journey, even if you make a choice that we would rather you didn’t make.”

The statement of values affirmed the right of its residents to request MAiD as well as the right of individual staff persons not to participate in procedures. Among the stated values are affirmations of “an overall philosophy of care that engages quality of life, dignity and respect in the dying process” and a desire to “balance end-of-life care that neither prolongs the dying process nor hastens death with a resident’s right to access Medical Assistance in Dying.” Regardless of the patient’s choice, the statement of values says, residents and their families “will not be abandoned at any point in the dying process.”

So what does spiritual accompaniment look like in the context of MAiD?

Peters Derry says that when it comes to MAiD, he sees the role of a chaplain or spiritual care practitioner as helping people figure out if they want MAiD and, if they are approved for MAiD, what kinds of conversations they need to have with their loved ones. “Our role as spiritual health practitioners, our role as chaplains, is not to bring our own biases into those conversations—not to bring judgment or the wrath of God into those conversations.”

‘We’re just there to walk with them’

“My role…is to walk with the people,” says Tracey Stagg. A spiritual health practitioner with Alberta Health Services, Stagg works at a 650-bed acute care hospital in Calgary.

In her work, Stagg has come in contact with MAiD from several different perspectives: she’s offered support to patients in the contemplative stage of deciding whether they want to apply for MAiD or prior to MAiD procedures; she’s helped families talk through their feelings about their loved one’s decisions; and she’s provided support for staff involved in the procedures and facilitated emotional debriefs afterwards.

Patients sometimes “need a safe person who they can trust and will know to sit with them [and] be able to just talk through this stuff,” she says.

“The most sacred thing I can do with a patient is to accompany them non-judgmentally; to work from a ministry of presence, to understand that I will not abandon them regardless of the choices that they have to make…, and I will be with them for as long as they want me to be there,” says Stagg. This is true for all of her patients, she adds. “Whether they’ve chosen a palliative route, to die more naturally, or for those who have chosen [MAiD], it is still a death that they have been involved in.”

While MAiD is legal across the country, different provinces have different ways of implementing the procedure. In Alberta Health Services, Stagg says, spiritual care is integrated into the process of requesting MAiD, offered as part of the contemplative stage. Spiritual care and religious care are also offered closer to the procedure, as many patients request certain religious rites or want to talk things over with a spiritual care practitioner.

“Our physicians identify physical suffering; our psychiatrists identify mental suffering. [Chaplains] identify spiritual suffering,” says Stagg. “So, part of my work with patients is where…maybe there is some spiritual suffering which they can alleviate or reconcile or understand. Sometimes minds are changed. Sometimes they’re not.”

The Rev. Carolyn Herold works part-time in a Calgary parish and casually as a spiritual care provider with Alberta Health Services, in a position that covers three different hospitals in the area. Typically, she says, her involvement with assisted dying cases is limited to talking with patients contemplating MAiD.

Due to some staffing circumstances that kept her in the same hospital for an extended period, Herold did provide spiritual care last year to a patient who requested and was denied MAiD. (Herold has received permission from the patient’s husband to tell the story.)

The patient, Deanna Toussaint, was suffering from severe cancer, and reacted poorly to every treatment the doctors tried. “Basically, throughout the treatment process, her life was miserable,” says Herold. “She was remarkable and well-loved by the nurses, because despite it all, she was just really kind to everybody…. She was amazing, despite the fact that she was going through an incredibly painful, horrible time.”

Eventually after “a long battle” with numerous treatments and terrible side effects, “she decided she didn’t want to do this anymore,” says Herold.

In an email to the Anglican Journal, Jean Guy Toussaint described his wife of 14 years as a person who was “vibrant, engaged, fierce, honourable and loved.”

After being diagnosed with cancer in November 2017, she underwent what Toussaint calls a “long, arduous, demanding and debilitating” process of treatment. By August 2018 she had decided she wanted MAiD.

“She struggled a lot and had all sorts of questions in terms of her faith…but her faith in God never wavered,” Herold recalls. “In terms of wrestling and being angry and all those things, absolutely. But she always had her faith.”

When she finally asked for MAiD, Herold said, the patient felt an enormous amount of peace. “Her entire demeanor changed from being anxious and struggling…. [She] knew exactly where she was going, was eager to be with God, eager to be back with loved ones who had passed beforehand.”

But when she submitted her application, it was denied under the clause in legislation that requires a patient’s death to be “reasonably foreseeable” for them to be able to access MAiD. Herold says doctors in the case determined that her death wasn’t imminent, and that she could live for more than three months if her treatments continued.

According to Toussaint, the treatment rather than the diagnosis was causing Deanna’s suffering. When, after the difficult, bureaucratic process of applying for MAiD, she was denied, Deanna began refusing food and water.

“What she ended up doing was starving herself to death…which is a horrible way to die,” says Herold. Toussaint says he felt useless, unable to help his wife die with dignity. “It was the worst feeling I have ever felt.”

Toussaint says he is still extremely angry about how his wife’s case was handled. “The choice [for MAiD] needs to be the individual’s and not [that of] a medical professional. They did not have the right to deny her God-given right to life or death,” he says.

Herold says it’s important to have spiritual care providers in the system to help people as they struggle with these decisions, “both for the patient and the family, and [help them] wrestle with their faith…to wrestle with the morality and ethics.” She also says it is important to have spiritual care providers with the skills to understand when people want MAiD.

It can be a hard job, Herold acknowledges; you get to know people, and they die, and that will always take a toll. “We’re just there to walk with them. And sometimes they’re walking in pretty dark places, and pretty angry places. And if you’re at all empathetic and sympathetic, that’s going to take a toll.”

But hearing her patient’s husband remark that the spiritual health practitioners were the only ones who understood what he and his wife had gone through, the only ones to support them—that was powerful, says Herold. “Carolyn Herold was one of the only true lights in this journey,” Toussaint told the Journal. “I would probably be dead if not for her and her husband.”

MAiD was one of the most-requested topics for conversation ahead of the first-ever national gathering of Anglican health-care chaplains in June 2019, the Rev. Eileen Scully, General Synod director of Faith, Worship and Ministry and one of the gathering’s organizers, told the Journal at the time. As a result, MAiD was the subject of a panel discussion at the gathering, and will likely be a topic for the next meeting, which will take place June 22-25, 2020, at Queen of Apostles Renewal Centre in Mississauga, Ont.