"We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived."
Tell someone you’re headed to a Death Café and no doubt their expression morphs into something between bewilderment and abject horror.
Odd words to toss together, and the name conjures up all sorts of somber, gloomy thoughts.
But Death Cafes are not morbid, depressing places, nor are they gathering spots for zombies. ‘Patrons’ don’t dress in black or ghoulishly discuss death while sipping tea.
Death Cafes are, in fact, respectful spaces where people of all ages can congregate to chat informally, often with complete strangers, about death and dying.
And who would choose to do that?
As it turns out, quite a few people; enough so, that there was a waiting list for the first ever Burlington Death Café last week at city hall.
The “very brave souls” and “trailblazers” - as organizers called attendees - ranged in age from their 40s to 80s.
Death Cafes are based on an “international movement” that originated in the UK and they are designed to begin a conversation about an uncomfortable, often taboo, subject – death.
There is no agenda or objectives at Death Cafes,” explained Roxanne Torbiak, of The End Game, which partnered with Carpenter Hospice to present the event. (Originally scheduled for the grounds outside city hall but moved indoors because of sweltering temperatures)
“It is simply a conversation that happens over coffee, tea and cake. Interesting conversation and laughter is guaranteed,” she said.
Among participants at the local Death Café were those whose professions routinely deal with death, but there were others from all walks of life and faiths who simply wanted to share and listen, people who felt the initiative an important conduit in opening up a very important discussion in the city.
“It’s really an introduction to the community. We want to create awareness and offer safe spaces for people to come together and talk about dying and death,” said C. Elizabeth Dougherty, a hospice palliative care social worker and educator.
“We want to reach out to everyone, all ages, and normalize it for people, whether they’ve been diagnosed with a life-limiting illness or whether they’re living healthy, fruitful lives.
“We want to create safe spaces for people to come together, to talk about their fears, their questions, their concerns, share their experience and really normalize this conversation.”
In their respective jobs as minister and palliative care consultant, Joel Bootsma and Villy Simonetta are all too familiar with death.
“Some people are very grounded in faith and meet it with courage, even joy; some with fear or worry,” said Bootsma, a Christian Reform Church minister, who was “interested in finding out what the community is wrestling with over this issue.”
As witness to extremes in how people deal with dying and death, Simonetta loves the idea of taking that fear out of death.
“It is part of life. It’s a beautiful experience when we’re born and as we go through the journey of life, it’s something we’re facing so let’s face it the best way we can, spiritually, (and) with love (and) compassion,” said Simonetta.
“I’ve seen some incredibly beautiful experiences where families are prepared; they’re very spiritual and it’s an intimate bonding time. Whereas some families struggle so much, they don’t want to let go and I struggle with that too because I see their struggle. You’re trying to support them in that whole process.”
In Buddhism, it’s about making death peaceful and quiet so one can let go of this world easily, commented Deborah Klassen, centre director of a Tibetan Buddhist Centre.
Participant Ann Dion was “privileged” to have been present for her husband’s, mother’s and mother-in-law’s death and
she feels strongly that the topic needs to be open and shared.
“We can’t be frightened because it’s there, it’s not going away,” said Dion. “(It’s like) If you don’t talk about it, it’s not going to happen.”
The Death Café was a natural supplement to Carpenter Hospice’s new Compassionate City Charter, said Bonnie Tompkins, Carpenter’s community health coordinator,
The hospice has based its charter on a UK model, and worked closely with the city to create “a framework of 12 social changes” to put Burlington on the path towards being a more compassionate city, said Tompkins.
“It’s all about building capacity in the community to support people because the reality is, the population is aging and the medical system can only do so much,” said Tompkins.
Many people don’t realize that healthcare professionals aren’t given training and education on dying and death and how to care beyond the medical model, or how to have those intimate, essential conversations about the psychosocial impacts of dying and death, said Dougherty.
“It’s about encouraging and empowering people to have these conversations with their families, friends and healthcare providers about advanced care planning, and their values and wishes for end of life care, said Dougherty, who co-founded The End Game, with Torbiak to provide professionally facilitated education and training sessions to normalize living and dying.
There is the demystifying piece to the movement, but the charter is also about embedding with community organizations to build bridges and links, said Tompkins.
“These conversations are so timely too because we know that only 16-30 per cent of Canadians actually have access to hospice palliative care services, so certainly funding and access is a concern,” said Dougherty.
Thankfully, she added, the quality of living and dying is on the national landscape, so it’s an especially important time to have these conversations, to raise awareness, and build a groundswell of public support.
Both Tompkins, who was sole caregiver for her terminally ill partner, and Dougherty, who has been immersed in palliative care for 17 years, said their experiences have taught them that open communication with loved ones is critical.
“Families are incredibly conflicted and very much wanting to be open and honest with each other, but the fear of not knowing what to say, or how to say it, or just the worry about the sadness. …denial is an incredible coping strategy for many people,” said Dougherty.
“The families I see that manage best certainly are those that have those open conversations, admittedly difficult conversations. It’s ok to be sad, it’s okay to be angry, it’s okay to be frustrated but it’s important to share what’s on your mind,” said Dougherty.
Last week marked the first Death Café in Burlington, but it’s certainly not the last, said Dougherty.
At the launch of the Compassionate City Charter this fall, organizers hope to have two simultaneous Death Cafes on Oct. 8, which happens to be World Hospice Palliative Care Day.
“We’re just getting started; we’re starting a revolution,” smiled Dougherty.
"My husband and I were always transparent with the kids. They saw me cry; they saw me get scared. We used words like died rather than passed away. Now I see the kids as these amazing, compassionate, clear-eyed people who know how to comfort others and who have made space in their life for death. That is so unusual in our culture. I want my kids to have a relationship with the fluidity of life—with the fact that sometimes people get sick and sometimes bad things happen, and to know that within that there is also grace, there’s also beauty, there’s also comfort. Because if you go down into the depths, there is treasure there. Cancer still sucks, but there’s also profound connection. It’s the privilege of allowing yourself to participate in the full experience of humanity, which includes grief and sickness and death. If you don’t look at [those things], you’re not living...
There’s this assumption that because you got better, you did it courageously. But that’s not my story. I didn’t “warrior” my way into getting better. It was not my achievement; it was science’s. Whenever I hear someone say “I beat cancer,” it just feels so disrespectful to others, such as my friend Debbie. It divides us into winners and losers. I know it’s not deliberate. We want to make meaning. We want to make sense of it. But you see how random [survival] is. I have known people who were healthier than me and younger than me who tried, I think, harder than I did to fight their cancer but who didn’t live…
The story is about losing something—yourself, people you loved, what you thought you knew about the world—yet still being whole. Butterflies are all about transformation. I try to see the beauty in all the damage. I try to see the beauty in all the ruin. And I definitely see the love."
“ ‘...I am asking that we make space – physical, psychic room, to allow life to play itself all the way out – so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end.’ ~ BJ Miller
Each of our lives is a story. As we plan for its final chapter, we have the opportunity to incorporate our passions, relationships, and spirituality to make dying better. How might we make this process more human-centered so we can live fully until the very end? Let’s re-imagine how we prepare for, share and live through the final chapter of our story.”
"An unconventional death educator with an equal parts wry and wise delivery style, Dr. Kathy Kortes-Miller is committed to showing her audience that talking about death and dying won’t kill you. Using stories and research, Kathy extends an invitation to view death as not a taboo subject - but rather a shared life experience. Audience members walk away with shifted perspectives and a deep understanding that talking about death, without knowing or needing all the “answers”, actually brings us closer to our loved ones than we ever imagined possible."
“The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”
She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone…
Just recently, Ms. Taylor had discovered the website To Whom I May Concern, the creation of Maureen Matthews, a psychiatric nurse. It arranges for people in the early stage of dementia to act out plays telling what it is like for them. Ms. Taylor clicked on some videos, at once felt the common spirit. The person saying, ‘People take that diagnosis and assume that you are now officially irrelevant.’ And: ‘It’s not that we want people to treat us as if we have Alzheimer’s. But at the same time we want people to recognize that we have it. Confusing, right? Welcome to our world.’ And: ‘The end stage is our future. But not today’.”
"Feel the story of who you are with your whole heart...
Courage to be imperfect...
Compassion to be kind to themselves first and then to others. We can't practice compassion with others if we can't treat ourselves kindly...
Connection - this was the hard part - as a result of authenticity they were willing to let go of who they thought they should be in order to be who they were... fully embraced vulnerability they believed that what made them vulnerable made them beautiful...
to do something where there are no guarantees..."
“I was spinning, untethered from the person I felt I had once been. A marathon runner, a devoted mom and wife, an independent woman who had never particularly liked asking for help. I was consumed by my sadness and confusion, by my anxieties about what was to come.
And then I discovered other people who were like me. Young moms and dads, people in their 20s who never had a chance to start a family, all of them living with ALS. I found them by writing about my experience, by joining a group on Facebook, and by becoming heavily involved with several nonprofit organizations that raise money for ALS research. My people, it turned out, were not the ones in the senior home who had lived long lives and had much to show for it. My people were the ones who were fighting for their lives, fighting for more time with their children, fighting a disease that we’d been told would certainly kill us–and soon”.
"My Gift of Grace is a game that helps everyone have better conversations about end of life. These conversations are challenging, but we can rise to the challenge together, and to prove it, we hold public games in Philadelphia on the final Friday of every month.
The game can be played by families, co-workers, teams, strangers, or a mix of any of these. There are no age restrictions or experiences you need to have before you play. The game adjusts itself to the level of comfort of the players and to how long a group wishes to play.
"Many of us come to mindfulness seeking relief from the confusing jumble of thoughts that dominate our lives much of the time. So the first gift that mindfulness gives us—after we get accustomed to the shocking simplicity of sitting and doing nothing—is a little bit of peace. We’re no longer as tormented by our thoughts, since as we observe them come and go, no single thought seems to be a big deal anymore. It’s like being at a laundromat watching the clothes tumble in a big dryer. We don’t have to tumble along with the clothes; we can just watch them fall through space."
“In her New Orleans neighborhood, artist and TED Fellow Candy Chang turned an abandoned house into a giant chalkboard asking a fill-in-the-blank question: ‘Before I die I want to ___.’ Her neighbors' answers — surprising, poignant, funny — became an unexpected mirror for the community. (What's your answer?)”
"When you come to the end of your life, how do you mark it's last moments?
This short documentary,Embracing Life, aims to take away the stigma attached to death and dying.
Talking to patients in palliative care, the creators of the film enable conversations about how people feel about approaching the end of their life.
'The aim of the project has been to help build the capacity of communities to talk about death and dying, loss and grief, so that those living with a terminal disease can be better supported,' Sam Kelly from Calvary Health Care Bethlehem told The Huffington Post Australia.
The patients interviewed in this film give an incredibly positive perspective on what it's like to face death.
'Once I accepted that death was to come, I've just held everyday and I try to live it to the fullest,' said Tony Steele.
“ ‘Let death be what takes us,’ Dr. BJ Miller has written, ‘not a lack of imagination.’ As a palliative care physician, he brings a design sensibility to the matter of living until we die. And he’s largely redesigned his sense of own physical presence after an accident at college left him without both of his legs and part of one arm. He offers a transformative reframing on our imperfect bodies, the ways we move through the world, and all that we don’t control.”
"At our core, we assume that hiding from pain will somehow keep us from feeling it. Of course, trying to shut our minds off to suffering effectively ensures that it will persist, in some form or another…
Denial is tricky. Sometimes, we think we are not in denial because we recognize the existence of an uncomfortable feeling, but still turn away from it. Our denial voice might say, “Of course I know I am going to die, but why think about it?”
We need not dig deep into all the possible physical maladies we might experience when we die — that’s not the point of opening up to discomfort. The larger point is that each moment becomes immensely powerful when we strip away various denials. We can recognize our fear of death, of change, of letting go of our attachments, and feel the discomfort of that recognition. By being honest with ourselves about our various forms of suffering, we don’t feel more suffering — we create freedom".
"One lives with a terminal illness by taking each day as it comes. In the beginning, I would tell myself that I wasn't going to die that day, and that I wasn't going to die the next day or even the next week. After time, the days started to accrue. Slowly but surely, plans were made; goals were set.
And so I learned that dying is really about living.
It's about taking each day for what it is, piecing together something good in it, and moving on to the next day. It's about planning for the future, while simulatenously planning for a future without you. It's about understanding the limitations that being sick puts on you, accepting those constraints, and doing things anyway. It's about simplifying your day to day life to enjoy more time to do the things that bring you joy".
"In his book Weller invites us to view grief as a visitor to be welcomed, not shunned. He reminds us that, in addition to feeling pain over the loss of loved ones, we harbor sorrows stemming from the state of the world, the cultural maladies we inherit, and the misunderstood parts of ourselves. He says grief comes in many forms, and when it is not expressed, it tends to harden the once-vibrant parts of us".
"I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live".