“ ‘What we’re looking for is where we are.’
Can we learn to live in joy amongst all that this great unknowing has to offer? Jack guides us through some of the key principles of the awakened heart, encouraging an attitude of graciousness toward the mysterious nature of our existence.”
Full article at JackKornfield.com
Source: Speak Up Ontario
"We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care."
Read the full article The New York Times
"There is simply no way to anticipate what grief feels like. It is one of those experiences that you can describe to someone, but it is impossible to really understand it until you are forced to live with it. Of all the unimaginable aspects of grief, there is one thing we hear people say time and again that they really didn’t expect: physical grief symptoms. They might not have been fully able to appreciate the emotional rollercoaster of grief until they were on it, but they at least had a sense it was part of the process. The physical stuff is something many people tell us they simply didn’t know to expect until it hit them like a ton of bricks.
When this happens, it can be distressing. Anytime we have new, uncomfortable physical issues it is distressing. But in grief that can sometimes be coupled with a new level of anxiety. In the past, a headache was a headache. After the devastating loss of a loved one, you are all-to-familiar with the reality that life can turn on a dime."
Read the full article at What's Your Grief
"To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free and enjoying a glass of Cabernet.
Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values and shared them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.
We must all — doctor, nurse, patient and family — also remember that these decisions require the collaboration of a whole team. The doctor is indeed the expert on the disease, but the patient is the expert on the patient. If you feel that you are not being included in decision-making for yourself or a loved one, or you don’t feel the team is communicating well, request a palliative care consultation, which brings communication expertise into the picture."
Read the full article at Time
"...Today, I can say that, of course, my life was permanently changed by losing Eric, but I know it is possible to make a new life that is rich and satisfying — though often tinged with sadness.
Now I find myself going and doing and functioning, and taking joy in life and its challenges. I never believed that would be possible, but I assure you it is. There are still times, especially good times, when the pain of missing Eric stops me in my tracks. But there are good times.
I believe I have grown in my ability to be compassionate and to understand the pain that others may be experiencing. Once you know the pain of excruciating, incomprehensible loss, you can’t un-know it. But when you endure struggle, you can also learn empathy.
I am sharing this because until I was diagnosed and treated with complicated grief — which I had never even heard of before and which 7 percent of bereaved people struggle with — I felt isolated and like my life had no meaning. I hope my story will reach anyone who’s feeling like that and show them there is hope. I even appeared on CBS to spread the word about complicated grief and help others who may be struggling. The Center for Complicated Grief has a website and can be found here."
"What’s often overlooked is that the simple conversation between doctor and patient can be as potent an analgesic as many treatments we prescribe."
“ ‘Because by that time the patient is too sick to be able to have a voice in their own care, their family members have never had this discussion with the patient because no one guided them,’ said Periyakoil. ‘So as a result, they're sort of making these very high stakes decisions in the dark. They, because they love the patient so much, are caught up in the deep, emotional trauma and it's very hard for them to be able to make decisions.’
If family members can’t speak on behalf of the patient, Periyakoil says aggressive, heroic measures will generally be used to prolong the patient’s life.
‘The system default is to do everything possible, every treatment possible, even though the treatment might be ineffective and the treatment may be something the patient doesn't want,’ said Periyakoil.”
“People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”
"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."
"Now, in the midst of a longevity revolution with a passion to create new rituals and connections that help a community to, yes, thrive, we are recognizing that dying is also a profound and shared human experience. Its time to talk about it."
Why Talking About Death Is the Key to the Longevity Revolution by Ellen Goodman
"Because the holidays are tough for all of us, the least we can do are share our tips and tricks with one another to make the season just a smidge more tolerable." ~What's Your Grief
"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
"Children's Grief Awareness Day is designed to help us all become more aware of the needs of grieving children — and of the benefits they obtain through the support of others. Children's Grief Awareness Day is an opportunity to make sure that grieving children receive the support they need.”
This enactment provides for the development and implementation of a framework designed to guarantee all Canadians access to high-quality palliative care.
1. This Act may be cited as the Framework on Palliative Care in Canada Act.
Development and implementation
2. (1) The Minister of Health must, in consultation with the representatives of the provincial and territorial governments responsible for health, as well as with palliative care providers, develop and implement a framework designed to give Canadians access to palliative care — provided through hospitals, home care, long-term care facilities and residential hospices — that, among other things,
(a) defines what palliative care is;
(b) identifies the palliative care training and education needs of palliative health care providers;
(c) identifies measures to support palliative caregivers;
(d) collects research and data on palliative care;
(e) identifies measures to facilitate a consistent access to palliative care across Canada; and
(f) evaluates the advisability of amending the Canada Health Actto include palliative care services provided through home care, long term care facilities and residential hospices.
Source: Parliament of Canada
Please join us as we host this free event. For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all die. This is an upbeat, interactive session that provides evidence-based tools regarding advance care planning, hospice, palliative and end-of-life care. Let's talk. Do you have an End Game?
For more information or to register, please visit Eventbritehttps://www.eventbrite.ca/e/the-end-game-conversations-about-life-and-death-tickets-27665945588?aff=efbevent
"The realities of death are not easy to confront. That much is clear in the trailer Netflix just released for “Extremis,” an original documentary short exploring the harrowing decisions families must make for their loved ones in urgent end-of-life cases relying on machine-based life support.
'We’re all gonna die…and it’s good to have a little bit of a say in how,' says Dr. Jessica Nutik Zitter, the palliative care physician featured in “Extremis,” as we see images of families, doctors and patients in the midst of facing death daily.
The trailer depicts the access granted to Oscar- and Emmy-winning filmmaker Dan Krauss (“The Kill Team”) into the ICU unit of an Oakland, California public hospital. Krauss attempts to intimately examine “the intersection of science, faith and humanity” by observing personal, real-time accounts of how complicated and emotionally wrought the dying process becomes when there are opportunities for choice in death.
The 24-minute film premiered at Tribeca Film Festival in April and the San Francisco International Film Festival on Saturday. “Extremis” is set to release globally on Netflix on September 13."
Source: IndieWire. September 6, 2016
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.
