Dying

End Game Documentary and Discussion

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Excited to co-host and participate on the panel for the launch of the 2018-9 season of "The 100% Certainty Project. Death: Something to Talk About". Join us for a screening of the Netflix documentary, "END GAME" followed by a conversation with Palliative Care clinicians.

Our free public event at McMaster University features the brilliant documentary "End Game" from Shoshana Ungerleider, MD highlighting the essential tenets of Hospice Palliative Care. The film showcases the collaboration, compassion and communication as the heart of person and family-centred care at UCSF Medical Center with Steven Pantilat and the extraordinary interprofessional team. The film also highlights the brilliant work of Zen Hospice Project, showcasing Dr. BJ Miller and the extraordinary interprofessional team in Hospice.

Please join us for this engaging event! While the event is free, registration is required via Eventbrite via https://www.eventbrite.ca/e/end-game-documentary-and-discussion-tickets-50535681584

Almost all Canadians would benefit from palliative care. Only one in seven can actually access it at end-of-life

“The key to providing decent palliative care is a little bit of basic planning. Four conditions – cancer, cardiovascular disease, COPD (lung disease) and diabetes – account for 70 per cent of deaths.

Those chronic conditions all have fairly predictable courses of illness in the terminal phase. You don’t get diagnosed with lung cancer or heart failure one day and die the next. It’s a months-long process and providing pain relief (palliation) should be standard, and a priority.

Two in three people receive home care in their last year of life. But only one in seven receive palliative care in the home.

That’s the failure point – and that’s what we need to fix.

There needs to be a commitment – philosophical and financial – to bringing palliative care to patients when they need it and where they want it.

Not everyone can (or should) be cared for at home in their final days. It’s back-breaking, emotionally-draining work for loved ones. Yet many would do so willingly and lovingly.

But they run up against a gross number of barriers, ranging from difficultly getting home visits from physicians (who are poorly remunerated for that work in many provinces), lack of nursing support (because of caps on home care hours), and absurd rules that mean drugs taken at home are not covered by medicare.

All the problems raised by the CIHI report are easily resolved. For example, having paramedics provide palliative care can eliminate transfers to hospitals. Sending doctors and nurses to homes or nursing homes can free up hospital beds – and save money in the process. Not to mention that, at the very least, people deserve a modicum of dignity in their dying days.

The whole point of palliative care is to improve quality of life. We shouldn’t let bureaucratic and structural inadequacies undermine that necessary and noble work.“ by the brilliant André Picard via The Globe and Mail

The Gift of a Hug for a Grieving Child or Teen

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Receiving a #Hug from a loved one is an incredible connection. Giving hand-knitted Hugs to #grieving #kids and #teens facing the dying or death of a loved one is a wonderful gift.

These #knitted Memory Scarves were made by #volunteers with Canadian Virtual Hospice in support of KidsGrief.ca providing a loving Hug and free resources to grieving kids, teens and families facing dying, grief and loss.

For more information, please visit: http://kidsgrief.ca/

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Breaking Down Barriers in the Context of Complex Illness, Uncertainty and Grief

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Am truly honoured to be presenting "Breaking Down Barriers in the Context of Complex Illness, Uncertainty and Grief" at the Ontario College of Social Workers and Social Service Workers 2018 Annual Meeting and Education Day.

Serious illness, dying and grief remain taboo in society, yet the diagnosis of a serious illness has a profound impact on an individual and their loved ones, and often results in feelings of uncertainty, isolation and grief.

This presentation will explore the role of social work and social service work in providing compassionate care for individuals and families of all ages following the diagnosis of a complex illness, at end of life and into bereavement. I will speak to the roles of social work and social service work in providing education to demystify these issues and further advocate to break down barriers while promoting greater access to support, within our own practice and within our communities.

For more information, please visit:  http://www.ocswssw.org/members/amed/2018-amed/

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Breaking Down Barriers: The Role of Social Work and Social Service Work in the Context of Complex Illness, Uncertainty and Grief

Honoured to present "Breaking Down Barriers: The Role of Social Work and Social Service Work in the Context of Complex Illness, Uncertainty and Grief" at the OCSWSSW 2018 AMED.

"Serious illness, dying and grief remain taboo in society, yet the diagnosis of a serious illness has a profound impact on an individual and their loved ones, and often results in feelings of uncertainty, isolation and grief. This presentation will explore the role of social work and social service work in providing compassionate care for individuals and families of all ages following the diagnosis of a complex illness, at end of life and into bereavement.

Elizabeth will speak to the roles of social work and social service work in providing education to demystify these issues and further advocate to break down barriers while promoting greater access to support, within our own practice and within our communities." 

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For information, or to register, please visit: OCSWSSW

Many healthcare students and providers do not feel prepared to encounter dying and death

Am excited to co-facilitate this event with the Division of Palliative Care at McMaster University as we discuss, "What makes life worth living in the face of death?".

Many healthcare students and providers do not feel prepared to encounter dying and death. As part of our 100% Certainty Project. Death: Something to Talk About, this event will feature: the stunning memoir When Breath Becomes Air; will show the brilliant TED Talk from Dr. Lucy Kalanithi; and will conclude the evening with a Death Cafe where we will discuss how to make the most of our finite lives.

Dinner is provided. Registration is required and space is limited. All healthcare disciplines are welcome!

For information, or to register, visit:

https://www.eventbrite.ca/e/100-certainty-project-death-cafe-tickets-43946860242 

A free Handbook for Supporters. Extending Compassion & Care to Grieving Youth

Am truly honoured to be a partner agency with the Children and Youth Grief Network.

Absolutely thrilled to announce our new resource is now available for FREE to any supporter caring for grieving children and youth. As grief and loss does not discriminate and affects children and teens everywhere, this resource is appropriate for anyone working with, or caring for, children and teens.

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This invaluable resource outlines creative activities, tools and resources while providing essential information about how to support children and teens throughout the grieving process.

If you would like to receive a pdf. of "A Handbook for Supporters. Extending Compassion & Care to Grieving Youth", please contact the Children and Youth Grief Network via info@childrenandyouthgriefnetwork.com

FREE resources for families facing illness, uncertainty, grief and loss

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Am honoured to have been part of the development team for the latest resource, Kids Grief, which was just launched on the first National Bereavement Day in Canada. I believe it is important to share these valuable resources for individuals and families facing illness, uncertainty, grief and loss. This information is also helpful for any healthcare professional or volunteer wanting more information and resources when providing support in acute care, primary care or within a community setting.

The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators. (Source: Canadian Virtual Hospice)

Kids Grief (0-18 yrs.) http://kidsgrief.ca/

Talking with Kids and Teens about Dying and Death. What do I tell the kids? How do I support them? A free online resource to provide guidance to parents on how to support children who are grieving the dying or death of someone in their life. It equips parents with the words and confidence to help their children grieve losses in healthy ways. (Source: Canadian Virtual Hospice)

Unfinished Business in Families of Terminally Ill with Cancer Patients

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" Families with unfinished business had significantly higher depression and grief scores after bereavement compared with those without."

Source: Unfinished Business in Families of Terminally Ill with Cancer Patients

YES, I WRITE ABOUT DEATH: ON THE WAYS PEOPLE RESPOND TO A “DEATH JOB” AND HOW I HANDLE IT

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"I tell them that it’s never my goal to glamorize death or tell people how they should or shouldn’t feel about death. I only hope my writing gives people permission to broach the topic."

Source: YES, I WRITE ABOUT DEATH: ON THE WAYS PEOPLE RESPOND TO A “DEATH JOB” AND HOW I HANDLE IT

 

“We know nothing about what is next” — Lessons on Loving & Losing a Child.

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"I cannot control their world, nor prevent them from all harm. All I can do is try and focus on the now. Focus on what matters... And love them. I can love them in every way I know how."

Source: “We know nothing about what is next”—Lessons on Loving & Losing a Child.

Joe Primo on Supporting Grieving Children

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"There is a cultural narrative that tells us that bad things don’t happen to good people. As a result, we spend a lot of time protecting kids from natural life events, like death."

Source: Joe Primo on Supporting Grieving Children. Option B

 

Parenting Through Illness & Grief

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"This one page handout provides an overview of the findings from a research study of parent caregivers. The study was conducted as a collaboration between Dr. Jay Children`s Grief Centre and the Nanny Angel Network" 

Source: Parenting Through Illness & Grief. Canadian Virtual Hospice

What Complicated Grief Is Like

"...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."

Looking Death in the Face

"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."

What people talk about before they die

“I visit people who are dying -- in their homes, in hospitals, in nursing homes. And if you were to ask me the same question -- What do people who are sick and dying talk about with the chaplain? -- I, without hesitation or uncertainty, would give you the same answer. Mostly, they talk about their families: about their mothers and fathers, their sons and daughters.

They talk about the love they felt, and the love they gave. Often they talk about love they did not receive, or the love they did not know how to offer, the love they withheld, or maybe never felt for the ones they should have loved unconditionally.”

Why is it so hard to talk about dying? @whenyoudieorg #hpm

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"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

Starting the Conversation: Death Cafe debuts in Burlington.

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.

Death Cafe. Increasing awareness of death with a view to making the most of our lives. #DeathCafe

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