When we breathe our last

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Image: Saskia Rowley/Shutterstock

Around the world, death cafés allow people of all faiths (and of none) to gather and discuss one of life’s greatest mysteries: its end.

Before Easter, the Lenten season begins on Ash Wednesday with the words, “Remember that you are dust, and to dust you shall return.”

Christians on that day live with a reminder of their mortality smudged on their forehead. On Good Friday, they remember the death of Jesus on the cross.

For the remainder of the year, this frankness about death and dying is less commonplace.

“In church…we can’t get away from some of our liturgical expressions. You know—‘death is over,’ ‘we’ve conquered death,’ all of those things. Those start to say that death is not a good thing, that we need to conquer it,” says chaplain Joanne Davies, an oblate of the Sisterhood of Saint John the Divine and the priest chaplain and spiritual care coordinator at St. John’s Rehab in Sunnybrook Health Sciences Centre, Toronto. “The thing is, we still die. We believe in eternal life; we have faith in eternal life. We have faith because of Christ. But we want to talk about conquering death.

“Jesus died. He died a death. His breath stopped, his body suffered. But we tend not to be entirely comfortable with that.”

Tea, cake and mortality

In recent years, some have been combatting this discomfort by hosting death cafés—a casual event centred around tea, snacks and open conversations about death.

The first death café was held in the UK in 2011 by Jon Underwood and his mother, therapist Sue Barsky Reid, who created the concept based on the ideas of philosopher Bernard Crettaz. Underwood envisioned the event as a welcoming space for a “straightforward and open discussion about death.”

The death café concept is a social franchise, meaning anyone can host an event and use the name, provided they follow the guidelines on the death café website.

(Underwood died in 2017 at age 44; the site is now run by Barsky Reid and Underwood’s sister, Jools Barsky.)

“I always wanted to start one, because what it’s tapping into for me was a desire to create a safe space for people to simply be able to talk about death,” says the Rev. Brenda Nestegaard-Paul. “We have such an anathema about talking about death in our society, and I would suggest that we’re not even that comfortable in a lot of our churches.”

Nestegaard-Paul first heard of the death café concept when she saw one advertised on another church’s bulletin board. She hosted her first death café in November, at Trinity Anglican and Lutheran Church, Port Alberni, B.C., where she serves as pastor/incumbent.

“I tried to create a very warm type of ambiance, a very welcoming ambiance,” she says. She put on background music and set out tables with cloths and centerpieces for a café feel. “It’s very low-key.”

About half the attendees were from the church, she says, and the other half from people outside the congregation.

Death café discussions are open to people of all faiths, or no faith, Nestegaard-Paul notes. “It’s not about trying to explain to somebody [the] right-ness [of] one’s own thoughts and beliefs, it’s all about just being able to talk about what everyone wants to say [about] death.” Some of the attendees were atheists or agnostics, she says. “It was really interesting seeing the dynamic in the circle, and how at the end our commonality—our mortality being our commonality—it really helped to diffuse any tension that sometimes might have been felt there.”

It’s also nice for people to know they can come to an event in a church and not be proselytized, she suggests. “The default often that people will come into is assuming that…[a minister or church member] is going to make them feel like they’re wrong, or they’re damned, or however they wish to articulate or understand that. So to actually have an experience where people might have different ideas, totally different ideas from them, and not accept their ideas as being truth, but that they were still respected and cared for, cared about—that’s a pretty positive thing.”

The death café website specifies that death cafés must always be offered “with no intention of leading participants to any conclusion, product or course of action”; “as an open, respectful and confidential space where people can express their views safely”; “on a not-for-profit basis”; and “alongside refreshing drinks and nourishing food—and cake!”

The model is also specified to be discussion-based and non-hierarchical, and it doesn’t include having specific topics, set questions or guest speakers. They are not bereavement support groups and don’t offer counselling.

The event drew a variety of people, Nestegaard-Paul says: those who were thinking about or planning for their own death, others who had grieved the loss of a loved one, people who were curious, and others who felt very comfortable talking about death and wanted to share their insight.

“I found it really refreshing, hearing the broad perspective that was represented around the circle. It was delightful to hear how people were really listening to one another and hearing one another.”

When Nestegaard-Paul hosted the death cafés in November, her husband was in the midst of a long illness. A scheduled café was cancelled in January, after her husband died at the beginning of the year. Hosting the death café “simply affirmed why I think death cafés are important,” she says. “Because I was hosting these, I think it helped people realize, oh, she is really comfortable talking about death and dying and all of that, because they knew what I was going through personally with my husband.

“Sometimes in our culture we don’t know how to be with one another, to be with someone who is grieving. Our default is to say nothing…. For anyone who is grieving, one of the best gifts we can give them is to give them the space to be able to talk about their loved one who has died. I knew that intellectually. Now that my life partner has died, I know the truth of that by experience. So, anything that we can do to help people prepare for death, talk about it, I think is a very positive thing.”

The church will be hosting more death cafés in the spring, says Nestegaard-Paul, and is planning to hold a “death festival” later in the year which will explore different rites and rituals around death.

Death is not something to be fearful of, she says. “When we fear it, or we get superstitious about talking about it, or get caught up in our culture—or certainly when you’re caught up in the health-care system, where it is life at all costs, quite frankly, [and] death is seen as a failure—it does very damaging things to us. Mentally, emotionally, spiritually, physically.”

Nestegaard-Paul says she sees death as “normal.”

“It’s part of life.”

A moment of ‘complete and utter transcendence’

Part of the importance of talking about death is acknowledging that it is ambiguous and unknowable, says Davies. “We need to talk more about it, I feel, so that we can learn to live in that unknown— and to actually come to love that unknown—because that’s the transcendent part. That’s the mystery part.”

Davies says she was surprised to see an avoidance of talking about death in the health-care field, even though it is encountered quite often. Often in cases of terminal illness, she observes, the patient is the one who brings up the topic of death. “It’s my experience that when we’re finally faced with it, the majority—not everybody—but the majority of people who are dying, they find they want to talk about it. I think that…as a chaplain, that was the part that really influenced me. It kind of hurt me, when I realized that those who are dying want to talk about it.”

Davies says that for many people who work in health-care, and are focused on healing, a patient’s death can feel like a failure.

John Beckman, a professor who teaches moral theology and health-care ethics at Regis College, the Jesuit school affiliated with the Toronto School of Theology, agrees. “With contemporary medicine, there’s the view of many that it’s medicine’s responsibility to keep us from dying, and that if we or a loved one dies, the medical profession must have screwed up.”

Contrary to what most might assume, Beckman says, studies have shown that physicians typically overestimate how long a patient is going to live and refer patients to palliative care later than perhaps they should. “The problem [with] overly optimistic prognoses, because [of physician’s] inability to confront and be honest with their patients, is that patients overwhelmingly wind up dying where they don’t want to die—like in a hospital, when they want to die at home. They way too often don’t put their affairs in order, they don’t say goodbye to their loved ones.”

When asked what a “good death” might look like, Beckman muses, “I think it’s the opposite of what most people think it is. I think most people, when you ask them how they want to die, they go, ‘Painlessly, in my sleep, when I’m not aware of it, instantly.’ Now, certainly, for most of the history of Christianity, Christians would have thought that was the worst possible death. Not being able to make sure you’re right with God and with others, to put your affairs in order, to say goodbye to people.” A good death, in his view, is “one which allows you to put your affairs in order…financially, emotionally, socially, spiritually, morally.”

He adds, “Part of what it means to be human is to depend on others and to learn to have the virtues of dependency to accept that, and not, ‘I…don’t want to be a burden.’” While there are times when respite is needed in the care of a chronically ill loved one, he says, in general, “you should want to be a burden. At certain points, everybody needs to be a burden and we need to bear each other’s burdens. That’s what it means to love other people.”

It is difficult to speak about hope when talking about death, says Davies, but “there is hope…our faith tells us there is. For the death that I’ve experienced in hospital, some of them, the passage to death was not at all nice. As much as we tried to help people with pain there’s still pain, and there’s discomfort…for others, it’s like a fairytale, you know? The person all dressed in white with a smile on their face, all through.” But, “The part that’s the same for everyone is that moment when the breath stops, and the heart stops, and there is a deep peace in the room, a deep, deep peace. Not of a door shutting and an ending, but of something so much greater than us. An absolute, awesome moment of complete and utter transcendence. You can feel it. It’s palpable.”

For Christians, talking about death—asking questions and working through fears—is a way to “grow deeper in their faith so they realize it’s not something they need to be scared of,” Nestegaard-Paul says.

“We’re an Easter people. We are a people who believe that death does not have the final say… Paul writes in Thessalonians: ‘We grieve, but not as those that have no hope.’ And it is because of that, that we are able to find joy even in the midst of our sorrow, we are able to laugh even in the midst of the pain. Yes, as followers of Jesus Christ, death is not the enemy.

“Having said that—we should not minimize the loss of our loved ones in the flesh, which is the other reason that we need to talk about death,” she says. There is a danger of interpreting Christ’s “defeat” of death as instruction not to cry, not to grieve. “That’s not true either. The fact of the matter is, when you lose someone in the flesh, that is a tremendous loss. And it is felt in the body, it is felt in all essence of who we are…. But because of our faith, the gift of this faith, we also know that it’s a ‘see you later,’ and not a ‘goodbye.’”


Talking about death in the time of MAiD

Photo: Sfam Photo/Shutterstock

The question of a “good death” is one that has been at the centre of a national conversation since 2015, since Canada’s Supreme Court ruled that parts of the country’s criminal code that prohibited medically-assisted deaths were in violation of the Charter of Rights and Freedoms. Medical assistance in dying (MAiD) has been legal—for adults over 18 whose death is “foreseeable”—in Canada since 2016, with public consultations underway this year to potentially widen eligibility requirements. Davies sees these changes as useful for opening up conversations about death.

“I think it’s helpful…. It’s also forcing people to hear from folks who are suffering, anticipating death, and have realized they want death, and that there is safety in that. I’m not talking about people who commit suicide because they can’t face life; these are people who have lived their life, they generally have reviewed it and where they’ve been,” people who see death as a new beginning. “Death will…in many ways give them their life back, because it will give the people around them the memory of their life as they knew them, as well….and bring them into something new that celebrates the life that they had, rather than it being all about this difficult moment of dying.”

Beckman, who is extremely opposed to the practice, believes it to be spurring the wrong sorts of conversations. “The best thing we could do would be to get euthanasia away from physicians…. Why do we need physicians, whose job is supposed to be to heal people, to make them well, why would we want to confuse them in what their job is?”

What makes a good death, just as what makes a good life, may well be different for everyone, Davies notes.

“You can’t ever say to someone, ‘I want you to have a good death and this is how it should be.’ Apart from the celebrating of life and them being able to talk about it, it’s up to the person.”

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Joelle Kidd
Joelle Kidd joined the Anglican Journal in 2017 as staff writer. She has worked as an editor and writer for the Winnipeg-based Fanfare Magazine Group and as freelance copy editor for Naida Communications.

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