"When heading into the unknown unprepared, we humans are rarely at our most confident. And when it comes to death, we have plenty of reason to feel anxious. It’s times like these that we need to hear from those who’ve gone before us. And that’s what our latest WYD In Focus provides: candid accounts from family members and caregivers who’ve been present at the deaths of loved ones—because understanding what happens at the bedside might surprise you."
Source: When You Die
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.
Carpenter Hospice and The End Game are pleased to invite you to Burlington's Death Cafe!
Death Cafe is an international movement where people, often strangers, gather to eat cake, drink tea and discuss death. Our objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives'.
At Death Cafe, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session. It is a respectful, open-air public event where people of all communities and belief systems are welcome to have discussions about death.
Interesting conversation is guaranteed!
Death Cafes are always offered:
1. On a not for profit basis
2. In an accessible, respectful and confidential space
3. With no intention of leading people to any conclusion, product or course of action
4. With coffee, tea and cake!
The Death Cafe model was developed by Jon Underwood and Sue Barsky Reid, based on the ideas of Bernard Crettaz. See more at: http://www.deathcafe.com
Please RSVP by July 20th as limited seating is available. For further information please contact:
(905) 631 9994 ext.138
Carpenter Hospice: Bonnie Tompkins commhlthcoord@thecarpenterhospice.com
The End Game: Roxanne Torbiak roxanne@theendgame.ca
"Over a cup of coffee, a little cake — and sometimes beer — people meet to talk about death and fear of dying in the death cafe..."
Listen to this episode of The Current for more.
"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."
“Spoiler alert: we are all going to die
One thing I have noticed as an “empowered patient” is that most people don’t talk about death and dying. We might think about it, but we don’t plan in advance or communicate what we would want if we ever were put in a position where we could not speak for ourselves. I understand. It is an uncomfortable topic.
According to a 2012 report by the California Health Care Foundation, 82% of Californian’s think it is important to put your end of life wishes in writing, yet only 23% have done so. Why is this important?
For one thing, doctors are trained to save people, and without a medical order or an advance directive, a medical team will, by default, try to save your life by all methods possible…
As a relatively healthy 36-year-old, saving my life by all methods possible actually sounds like a good idea! But if I was dying, say from an advanced brain cancer, there is no amount of CPR in the world that is going to cure me of cancer…
The beginning of the end
…The medical team gave J medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window.
As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air…
We fell silent and the first song began…
A friend said “Orange Sky” held a lot of meaning for J. I had never heard this song, but now I will never forget it. I watched J’s heart rate decrease during the first two-thirds of the song, from the low 30s to zero. The monitor began to ding. A friend pushed a button, silencing the sounds. I held J’s feet.
We listened through the end of the song, with our faces on J’s, tears pouring out of our eyes. I was sobbing. We were devastated.
No one danced.
When the song ended there was silence.
Then the scene from a movie played out: A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to J’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of J’s eyelids to shine a flashlight into the pupils looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, “It is 6:11. Take as long as you need.” He exited the room. End scene.
We all stood looking at J for a long time. Then the music began again… ‘We Could Be Heroes,’ by David Bowie.
The end
The best way to capture your healthcare preferences is by having a conversation with your loved ones, appointing a medical decision maker, and then documenting your preferences in an advance healthcare directive.”
“This early interaction with death is overwhelming, but a pivotal point for learning. This grief acts as a blueprint for not just how these young people process death, but their approach to the many challenges they will face in life.
If you are struggling to help a teenager with their grief, know that your concern is evidence of your care. There is nothing that can make this not awful, so don't make your aim to stop the tears, but rather to support them in what they need. Respecting their needs shows them that you believe in their ability to know what's best for themselves. You're doing good.”
Important conversation about supporting quality of life and the need for universal access to Palliative Care - the comprehensive care supporting individuals and families facing a life-limiting illness from time of diagnosis to end-of-life and into bereavement.
“We often hear from family members that they find great value in our Guide for Family Caregivers, detailed information on how to handle such common end-of-life symptoms as breathing problems, pain, changes in behavior and sleeplessness. The piece details several signs that may signal a loved one is transitioning from life to death, such as no appetite or urine output, and changes in breathing sounds and patterns.
We encourage people to be a calm presence, to hold the loved ones hand, to call in others who wish to be present, as well as call Hospice for support. Hearing is the final sense to go, so we encourage family members to continue speaking to their loved one, reassuring that everything is all right.
‘What we are trying to do is normalize what they are going through,’ says Joel. Death, after all, is not an aberration but a universal end we all one day meet. ‘We want the family members to know what the very end of life looks like and what they can do when the time comes. What can they do? Literally, just hold your loved one’s hand’.”
"Now comes a fine addition to the most intelligent and imaginative children’s books about making sense of death — the crowning jewel of them all, even, and not only because it bears what might be the most beautiful children’s book title ever conceived: Cry, Heart, But Never Break (public library) by beloved Danish children’s book author Glenn Ringtved and illustrator Charlotte Pardi, translated into English by Robert Moulthrop.
Although Ringtved is celebrated for his humorous and mischievous stories, this contemplative tale sprang from the depths of his own experience — when his mother was dying and he struggled to explain what was happening to his young children, she offered some words of comfort: “Cry, Heart, but never break.” It was the grandmother’s way of assuring the children that the profound sadness of loss is to be allowed rather than resisted, then folded into the wholeness of life, which continues to unfold".
"Drawing from over 30 years of stories and wisdom from grieving children, teens, and adults, the Dear Dougy Podcast is opening up the conversation about dying, death, and bereavement. As humans, we all experience loss during our lives, but often find ourselves lost and unsure when it comes to navigating the grief that follows. Whether you’re grieving a death, or wanting to support someone who is, the Dear Dougy Podcast can help explore your questions about grief".
Patients staff and students talk about their experience of palliative care in this film that takes away some of the stigma attached to death and dying enabling important conversations to happen at the end of life. The observations contained demonstrate the quality of life that can be attained at the end of a person's life.
"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.
“Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.
The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end…
We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.”
“And I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.) The conversation was incredibly stressful. At one point I realized I was holding my breath.
After answering all my questions, Doug looked at me kindly and said, ‘You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.’
That completely changed my thinking about the situation. It gave me a new and positive goal - to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed -- visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from the newspaper, and buying him even more of the stuffed animals he loved so much.”
"We’ve all been told we should live each day as if it were our last, but how many of us truly can? Life is a journey. We’re in the middle of it. When we hear the news, we know — for the first time really know — our journey will end. What do we want from our doctors at that moment? What do they want from us? No matter where we sit, we are infinitely far apart and impossibly close. They have given us something no one else on earth has ever given us before, and we are transformed."
"Dr. William Breitbart, chairman of the psychiatry department at Memorial Sloan Kettering Cancer Center, who has written about delirium and palliative care, said that a team’s response must also consider bedside caregivers: “These dreams or visions can be interpreted by family members as comforting, linking them to the legacy of their ancestry.
But if people don’t believe that, they can be distressed. ‘My mother is hallucinating and seeing dead people. Do something about it!’ Dr. Breitbart trains staff to respect the families’ beliefs and help them understand the complexities of delirium.
Some dream episodes occur during what is known as 'mixed-state sleep' — when the boundaries between wakefulness and sleep become fragmented, said Dr. Carlos H. Schenck, a psychiatrist and sleep expert at the University of Minnesota Medical School. Jessica Stone, the teenager with Ewing’s sarcoma, spoke movingly about a dream of her dead dog, Shadow. When she awoke, she said, she saw his long, dark shape alongside her bed.
Dr. Banas, the neurologist, favors the phrase end-of-life experiences. 'I try to normalize it for the family, because how they perceive it can push them away from that bedside or bring them closer,' she said."
Dr. Christopher Kerr speaks at a 2015 TEDx event Buffalo, New York. Dr. Christopher W. Kerr is the Chief Medical Officer at The Center for Hospice and Palliative Care, where he has worked since 1999. His background in research has evolved from bench science towards the human experience of illness as witnessed from the bedside, specifically patients' dreams and visions at the end of life.
"Dr. Christopher W. Kerr is the Chief Medical Officer at The Center for Hospice and Palliative Care, where he has worked since 1999. His background in research has evolved from bench science towards the human experience of illness as witnessed from the bedside, specifically patients’ dreams and visions at the end of life. Although medically ignored, these near universal experiences often provide comfort and meaning as well as insight into the life led and the death anticipated".
"When loss enters our lives, understanding how to confront it can be difficult. Rachel Stephenson learned a valuable lesson after a difficult loss and shares her wisdom on what it means to grieve meaningfully.
Rachel is an educator, administrator, and writer. For the past 7 years, she has worked for The City University of New York (CUNY) designing and implementing innovative, high-performing programs focused on civic engagement, workforce development, and youth development for a range of inspiring CUNY students. Launching the CUNY Service Corps in 2013 is one of her proudest professional accomplishments. Rachel holds a Master of Fine Arts degree in Nonfiction Writing from Columbia University’s School of the Arts.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community".
"In richer parts of the world, death is likely to arrive in a nursing home, or in a hospital—precisely where we most dread spending our dwindling hours. The exit from life, as Atul Gawande observes in his treatise “Being Mortal,” has become overly medicalized in recent decades, causing us to forget centuries of wisdom. We have ended up with a system that treats the body while neglecting its occupant. But the discontent is mounting, Gawande says: 'We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase'."
"We shouldn’t be afraid to talk about what a good quality of death is while balancing a good quality of life. I believe a good quality of life relates more to the application of medical intervention or lack of medical intervention. For me, a good quality of death relates to the amount of grace and love that surrounds me. I am hopeful, it will fuel empowerment and strength as I face my death. I want to find grace and love in myself and the people sharing this journey with me".
