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Final decisions

Dying used to be so simple. New laws and changing customs make for a more complicated exit.

By Various Writers

Helping patients die could soon be legal. Is the church ready to respond?
By Christopher White

It’s a rainy spring evening, and I’m sitting in the back of the sanctuary at Enniskillen United, a little northeast of Oshawa, Ont. Lakeridge Presbytery is holding its monthly meeting at the church, and the thorny subject of physician-assisted suicide is on the agenda. Shirley Taylor, chair of the Presbytery’s mission, outreach and advocacy committee, divides the 90-odd presbyters into small groups and asks us to consider several questions: “How do you feel about physician-assisted suicide? What concerns, if any, do you have? What actions can a congregation take to assist people facing the end of life? How might congregations talk more openly about death and dying?”

I join a group made up of Rev. Jeff Doucette of Dunbarton-Fairport United in Pickering, Ont., and Rev. Bob Brawn, a retired minister with over 38 years of pastoral experience, as well as two retired nurses: Janice Hannon, a former palliative care nurse, and Lois Warden, who worked in public health. The conversation quickly takes off. Everyone has a harrowing story to share of a difficult death they’ve witnessed, and all agree that “it’s about time” people were allowed an assisted death. For Hannon, physician-assisted dying is a matter of dignity and respect. “God doesn’t want us to suffer,” she says, adding that it disturbs her that too many people endure needless pain. Each of the group members agrees that while medical technology can extend life, postponing death is not the same as restoring health. Doucette says he sees death and dying as profoundly theological issues that we have yet to fully explore. At life’s end, “people need to have an experience of God’s grace,” he says, “not the feeling that they are being punished.” 

By the end of the session, new questions emerge, ones that perhaps only church people will bring to the national debate: What role does faith play as we approach the end of our lives? Are clergy equipped to help suffering parishioners decide whether to choose a physician-assisted death? And finally, to whom does our life belong — to ourselves, to God or to both?

Interestingly, Sue Rodriguez posed a variation of this question to members of Parliament back in 1991. Earlier that year, the Victoria woman had been diagnosed with amyotrophic lateral sclerosis (ALS). She would take her fight for a legal assisted suicide all the way to the Supreme Court of Canada. In a prepared video statement, she asked MPs, “If I cannot give consent to my own death, whose body is this? Who owns my life?” The court ruled against her in 1993, but an anonymous doctor took up her cause, helping Rodriguez to die by lethal injection. 

Canadians have been debating the morals and merits of physician-assisted death ever since. Last February, the Supreme Court of Canada struck down the law against physician-assisted suicide and gave the federal government 12 months to come up with a new law. Assisted dying could well become an issue in the October federal election. 

While a recent Forum Research poll found 78 percent of Canadians support legalized physician-assisted suicide, they may not all agree on the finer points. Dr. Paul Karanicolas is a surgical oncologist at Toronto’s Sunnybrook Hospital and a member of Fairlawn Avenue United in Toronto, where I am a minister. He has concerns about physician-assisted suicide and wants clear guidelines around who has the authority to make end-of-life decisions, as well as the criteria that a person wishing to die must meet. 

“What about depression?” he asks. “Does a person who is suffering clinical depression have the right to ask that their life be ended? What if I can treat the depression, but they don’t want treatment but to end their lives?” He highlights more grey areas with another scenario: “What if a person is given a terminal diagnosis and, as a result, slips into depression and then asks to end their life? What if we can treat the depression and, if no longer depressed, the person might opt for palliative care instead? How are we to decide?” 

Many of those studying the issue examine the practices of other countries. In Belgium, for example, physician-assisted suicide is now available to terminally ill children of all ages, provided they’re old enough to ask for it themselves, demonstrate they fully understand their choice and have the consent of their parents, among other criteria. Belgium also allows assisted suicide for “mental suffering that cannot be alleviated.” The country is now being taken to the European Court of Human Rights by Tom Mortier, whose mother, who suffered from depression, was euthanized at her own request. Mortier was only notified of her death when the hospital called asking him to collect her body from the morgue. “If you made a movie about what’s happening, people just wouldn’t believe it, but in Belgium, it’s reality,” he states in an article in the Telegraph. 

With so much at stake, faith communities have a unique opportunity to not only grapple with the ethics of physician-assisted suicide but also to help shape the conversation. In a blog post last October, United Church Moderator Rt. Rev. Gary Paterson wrote, “Laws change and this is an area where I think they should change in order to allow physician-assisted dying in circumstances that meet carefully defined criteria.” In a later blog post, he urged the church to provide a “third space,” beyond work and home, where people can gather to discuss the issue. Paterson’s call inspired the group session at Enniskillen United last spring. And it’s inspiring other conversations right across the country.
'Laws change and this is an area where I think they should change in order to allow physician-assisted dying in circumstances that meet carefully defined criteria.'
Tracy Trothen is an associate professor at Queen’s University’s School of Religion in Kingston, Ont. As a Christian and a biomedical ethicist, she believes physician-assisted suicide raises even more profound questions than those currently being debated. “We live in a culture of extreme individualism, and we need to ask: What does it mean to be in relationship? What does it mean to do good? What does it mean to consider what God wishes for us?” 

Rev. John Moses of Trinity Clifton United in Charlottetown has been a minister for 37 years. He’s troubled by the Supreme Court ruling, seeing it as a “reflection of a culture that believes in a fix for everything.” Moses is also critical of extending life through medical technology, calling it “pointless heroic intervention that exacerbates suffering.” As to the role of faith in suffering, “God abides in the pain and the sorrow,” he asserts. But perhaps his greatest concern is about how the decision to end a life will be made, and who is actually competent to make it. “It is a solemn thing to take a life.” 

Mary Ellen Richardson is a member of Fairlawn Avenue United. As a baby boomer with young-adult children, she sees physician-assisted suicide as a generational issue. “The reality is that a whole generation [of boomers], from today through to the next few decades, are facing their own deaths, and that means that we need to deal with this now,” she says. She challenges faith leaders to step up and speak out about whether they support assisted death. “I need to know that I’m not damned if I do this,” she tells me. Like John Moses, Richardson believes that through our technological prowess, we have extended life far beyond what nature intended. As a result, we’re now forced to medicalize death. “It shouldn’t be our decision, but God’s,” she says, “but we have taken that away.”

For Rev. Deborah Foster of St. Mark’s United in Whitby, Ont., the very wording of “physician-assisted suicide” is problematic. “We need to call it physician-assisted dying,” she says. “The word ‘suicide’ really bothers people and raises genuine concern that they might go to hell if they do this or talk about it with their parents.” For Foster, it’s critical that we ground this discussion both in scripture and in our faith. “It was Paul who wrote that ‘neither death nor life . . . nor anything else in all Creation will be able to separate us from the love of God.’ That’s what we need to emphasize, that God’s love is at the heart of our dying.” 

Foster also believes that United Church people need to have a serious discussion about what they believe happens after death. “Our creed says, ‘In life, in death, in life beyond death, God is with us.’ What do we mean when we say those words?” 

I ask her the question that strikes at the heart of the matter for many Canadian ministers: “If a parishioner asked you whether it would be morally acceptable to request a physician-assisted death, what would you say?” Foster pauses for a moment and then says firmly, “Yes. But it would be very, very hard, and it would be as part of a team that was helping this person.”

As a minister who has offered pastoral care to many suffering and dying people, and as someone who has faced his own serious health issues, I am deeply conflicted on this matter. Personally, I want to have as much control over my exit as I have had in my life. But there are many unanswered questions. Does physician-assisted suicide give governments and hospitals a pass on having to provide first-rate palliative care — the kind that provides genuine peace and dignity? Who decides who is allowed to die? What are the criteria? Who sets and reviews them? How do we protect the vulnerable? How can we build in safeguards that will not erode over time? How can we ensure that an option doesn’t become a suggestion? And lastly, if life is a sacred gift, what role do God and faith play?

I agree with John Moses when he says, “It is a solemn thing to take a life.” Yet I also agree with a former congregant who, in great bitterness during his mother’s dying, told me, “We treat dogs better than we treat human beings at this stage.” 

In June 1990, my own mother lay in a hospital bed dying from the cancer that had haunted her for more than 20 years. The chemo hadn’t worked, the cancer had spread and now her life was fading away. Pain was a constant presence, and she was given more morphine in an attempt to make it manageable. During my visit, I could tell that she was still in discomfort and asked her medical team to increase the drugs. The doctor took me to a quiet room and explained that he was reluctant to do this, as an increased dosage of morphine would compromise her respiratory system and hasten her death. I was baffled by his logic. The practice, called “passive euthanasia,” had been going on for decades in Canadian hospitals. “Increase the dosage,” I told him. “Keep her comfortable; that’s all that matters.” Two days later, she died in peace.

The very last words that my mother spoke to me were these: “I gave you life to live, now go and live it.” I have tried my best over the course of my life to follow her words. Ultimately, that is all that any of us can do to the very best of our ability. Dying is as much a part of the human journey as birth. It’s time we looked at it honestly and faithfully, so that our ending is as filled with meaning as our beginning.

Rev. Christopher White is a minister at Fairlawn Avenue United in Toronto.

A do-not-resuscitate order gives nature the last word
By Trisha Elliott

Before she was a candidate for United Church ministry, Deborah Ambridge Fisher of Lambton Shores, Ont., was a hospital clerk, transcribing and processing do-not-resuscitate orders. “I had strong opinions about it: I didn’t believe people should be resuscitated at all costs,” she remembers. But then her sister, who has terminal cancer, passed out. She was rushed to hospital, and as medical staff struggled to revive her, a doctor came running to ask Fisher if her sister had a DNR order. Fisher froze. Her sister didn’t have a DNR, and Fisher had no idea whether she would want to be resuscitated. “My mind changed on the issue almost immediately. Seeing my sister there, I wanted the doctors to do all they could.” Fisher’s sister survived; she continues to live with cancer. 

In the heat of the moment, when a loved one is at death’s door, an abrupt change of opinion is common. 

Medical advances have given us more options than ever but don’t help us decide which option is best. Even when we are emotionally and spiritually prepared to sign a DNR order — or think we are — the logistics of obtaining and filing the required documents can be complicated. In the absence of a DNR order, doctors will do everything they can to save a life.

“CPR [cardiopulmonary resuscitation] is a default treatment. Unless you have a DNR, you will receive CPR,” explains Wanda Morris, CEO of Dying with Dignity Canada. “DNR is an example of a refusal of treatment. Treatment can be refused by the person themselves or by a substitute decision-maker.” 

A DNR order is a refusal of a range of treatments, from mouth-to-mouth breathing, to chest compressions, to electric shock, to the insertion of breathing tubes and medications. Life-saving interventions don’t necessarily have a Hollywood ending. “It depends on the health of the person prior to the intervention and to the type of intervention that is used,” says Dr. Jeff Blackmer, vice-president of medical professionalism with the Canadian Medical Association.

Even if a person chooses not to pursue life-saving measures, the patchwork of legislation around DNR orders can be confusing; provinces have varied processes, and not all DNR forms are legally binding.

Matthew Woodall attends Eastside United in Regina and has had nearly a decade of experience as a firefighter and first responder. He says that many long-term care homes and nursing homes have their own internal DNR forms, but they’re only valid for the institution’s staff. “First responders [and hospital staff] are not legally covered by that internal document, and so they have to resuscitate that person.” Woodall once attended a call for a cardiac arrest where the man, who had been sick for a long time, had made his do-not-resuscitate wish known in a variety of ways — except the legally binding one. “We were faced with the possibility of having to go against this person’s wishes and initiate resuscitation on a very sick person who clearly didn’t want it.” Mercifully, perhaps, when responders arrived, they quickly ascertained that the man was already dead.

Blackmer says the reason DNRs can’t be transferred between institutions is that each one “will have its own policies and procedures. In some hospitals, the form allows people to decide what level of intervention they wish to have. For example, it enables people to say, ‘I don’t mind chest compressions, but I don’t want to have a tube down my throat.’” 

Making sure family members or those who have power of attorney know that you have signed a DNR — and where to find it in case of an emergency — is crucial. Morris advises people to sign and date a DNR order on an annual basis. “The only way a DNR can be rescinded is if it is physically torn up,” she says. Instructions on how to obtain a valid DNR in every province and territory are available on Dying with Dignity’s website (www.dyingwithdignity.ca), along with a downloadable Advanced Care Planning Kit to help people discern their wishes.

“If there’s one thing that I wish everyone would know about DNRs is that it’s not enough to just have it written in a living will or other document,” says Woodall. He suggests that if you choose to sign a DNR order, talking to local paramedics to find out what they need to honour that last request is helpful. “Emergency responders want to do what is best for the patient, and we understand that not doing anything is sometimes better than aggressive resuscitation efforts that are against the person’s will.”

Rev. Trisha Elliott is a minister at City View United in Ottawa.

Sarah Kerr, death midwife: Photo by Leah Hennel/Calgary Herald. Reprinted with permission of the Calgary Herald (calgaryherald.com)

A new breed of spiritual guide helps families mourn the loss of a loved one
By Anne Bokma

Richard Griebel believed the way he handled his death was the last great lesson he could give his four adult children.

When the cattle rancher from Castor, Alta., was diagnosed with terminal thyroid cancer five years ago, he carefully considered how he wanted to depart this earth. He hired Sarah Kerr, a 48-year-old Calgary “death midwife” who offers “nature-based spiritual support for illness, death or loss” to help plan his final exit. 

Griebel died at home on the night of May 16, 2014, at age 62. That same day, Kerr began a four-day ceremony to help his family and friends mourn his passing with a series of rituals that let them say goodbye in an intimate and profound way. Griebel’s wish was to die at home, on the family farm where he had been raised. In the wee hours that night, his wife, siblings and children gathered to wash and dress his body. The following evening, about 35 people gathered for a storytelling circle to share what they loved and would miss most about him. On the third day, his body was placed in what they called a “prairie canoe” — a platform made of poplar and spruce trees and lined with a bison hide — and he was carried among a procession of 120 to a service held at a location on his farm known as “The Rock,” where there was an enormous boulder that had been the site of many family celebrations. (His ashes would later be buried there.) On the fourth and final day, 400 people attended a public service held at the local community hall and presided over by Kerr. 

“By the time his wife and children went to that large gathering, they had had enough time to process the grief and come to terms with his death so that they could receive the love and support being offered in that public funeral,” says Kerr, who charged $5,000 for her services, far less than typical funeral costs, which can easily top $10,000. “People put a lot of money into hearses and caskets and flowers, but that doesn’t bring healing. What brings healing is being with the process of death emotionally and spiritually.”

Death midwives like Kerr are advocating for a new approach to dealing with death. They are part of an emerging social movement that encourages people “to reclaim the experience of dying — much the way baby boomers did with home births and home schooling,” says Kerr. 

These practitioners, who are unregulated and unlicensed, come from various backgrounds: some are medical professionals; others are therapists or healers. Their role is to create meaningful death experiences and memorial rituals by planning home funerals and vigils, facilitating end-of-life discussions and offering bereavement support. They can also assist with practical matters, including “disposition consultation” and dealing with legal paperwork such as death certificates. Kerr says death midwives like herself fill the void for people who don’t belong to a faith community but still yearn for an ending infused with meaning and ritual. Although she eschews the billion-dollar funeral industry, she says she’s willing to provide her services alongside funeral directors — and clergy. “The rituals I use can be adapted to any spiritual tradition,” Kerr says. 

Only about two-dozen death midwives are active in Canada, but their number is growing. The Canadian Community for Death Midwifery was launched this year and administers a Death Midwifery in Canada Facebook group with more than 1,500 members. BEyond Yonder, a new program providing death midwifery training in Canada, is launching this fall with a 12-week, $2,000 online course.

Rayne Johnson, 60, is a death midwife and massage therapist in Edmonton. She provides workshops on end-of-life issues to medical and palliative care professionals, as well as coaching for $80 to $100 an hour to those who are dying and to their caregivers. She says her 20 years of experience in palliative care have shown her that while 80 percent of people want to die at home, the majority end up dying in institutions. Misconceptions around home funerals abound, she adds. For example, most people don’t know you can keep a body at home for up to 72 hours. Death midwives will provide dry ice (in plastic wrap) to keep the body cool and prevent it from decomposing, and you don’t need to hire a funeral director to transport the deceased to a cemetery. When a close friend died 18 years ago, Johnson was among those who drove the woman’s body to the gravesite in a station wagon. 

Death midwives say grief is a normal response to loss. Instead of tamping it down, we should embrace it fully. Healing rituals — such as washing and anointing the body, singing, drumming, storytelling and chanting — can help the living cope with their loss. “We have neutralized and sanitized our practices around death. Denial is the name of the game,” says Kerr. “I can’t tell you how many grieving spouses have told me the first thing they are offered to cope is prescription medication.” 

Rochelle Martin, 42, a registered nurse and death midwife in Hamilton who offers “death care” workshops for health-care, religious and community groups, says people benefit from the services of death midwives “because culturally we have forgotten how to grieve.” She blames protracted bereavement and depression after the loss of a loved one on an inability to come face to face with death. When patients die in the hospital, Martin encourages the families to hold the body of the deceased and wipe their face tenderly with a washcloth that she provides. “It’s an invitation to touch their loved one,” she says. “Families will describe these moments as an invaluable final expression of love, one that is imperative in the process of saying goodbye.”

For some, touching a dead body or displaying a corpse may seem too macabre. But these ideas aren’t new. Until about 100 years ago, funerals were a community undertaking with the family preparing the body and welcoming guests into their home. Today, in many of Canada’s Indigenous communities, this is still a normal practice.

When Johnson’s father, who attended Third Avenue United in North Battleford, Sask., died 14 years ago, she and her five siblings built his casket while he was still alive, searing it with the cow brand he used on his farm. The family kept vigil next to his body for two days at home and took his body out for one last drive around the farm in the back of a pickup truck before he was buried. “It made his death very real,” says Johnson. “We have to face it, rather than deny it.”

Anne Bokma is a journalist in Hamilton.

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