Death

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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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

Camp Erin: Where Children and Teens Learn to Grieve and Heal

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Am honoured to volunteer with Camp Erin. It is indeed a remarkable community and one that nurtures capacity in children and youth to grieve the death of a loved one.

"Children and teens ages 6-17 attend a transformational weekend camp that combines traditional, fun camp activities with grief education and emotional support, free of charge for all families. Led by grief professionals and trained volunteers, Camp Erin provides a unique opportunity for youth to increase levels of hope, enhance self-esteem, and especially to learn that they are not alone.

Camp Erin is offered in every Major League Baseball city as well as additional locations across the U.S. and Canada. The Moyer Foundation partners with hospices and bereavement organizations to bring hope and healing to thousands of grieving children and teens each year.

Camp Erin allows youth to:

  • Tell their story in a safe environment
  • Process grief in healthy ways
  • Meet friends facing similar circumstances
  • Learn they are not alone
  • Build a tool-box of coping skills
  • Honor and memorialize loved ones
  • Have fun!"

Source: Camp Erin. The Moyer Foundation 

For information on Camp Erin locations in Ontario, please visit: Camp Erin Hamilton; Camp Erin Toronto; Camp Erin Eastern Ontario; Camp Erin Montreal

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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."

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

Death cafes serve up life and death conversations. #DeathCafe

"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.

Talking About #Death Won’t Kill You. @Kathykm @TEDTalks #Death #Education #hpm

"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."

Hacking the #Hospital #Death. When you Can't #Die at #Home. @TheLizArmy #ACP

“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.”

How To Support A Young Person Through Grief

“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 Conversations with Experts in the Field about #Dying and #Death. #hpm

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.