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For those of you who are curious about why I wrote this report, here’s the introductory note I wrote to explain what had changed between 2013 (when I wrote the first report) and 2018 when this report was released:

Doesn’t everything die at last, and too soon? Tell me, what is it you plan to do with your one wild and precious life?
MARY OLIVER, “THE SUMMER DAY”

When I wrote the first edition of this report in 2013, Contemporary Family Trends: Death, Dying and Canadian Families, I could not have imagined how much the circumstances around death and dying would change in a few short years. While I knew that efforts were under way to legalize what I termed “assisted suicide” in the 2013 edition, I did not anticipate the Supreme Court ruling in Carter v. Canada in 2015, nor the passage of Quebec’s Bill 52 and Bill C-14 that legalized medical assistance in dying (MAID) in June 2016. Although the issues surrounding medically assisted dying are not fully resolved, MAID is legal across Canada (under certain circumstances), and to date more than 2,600 people have obtained medical assistance in dying.

Despite opposition from some organizations and individuals, it appears that most Canadians have come to accept MAID as a fact of life (and, of course, death). There can be little doubt, however, that the silence surrounding death and dying with which I opened my previous report has – to a degree – been broken.

Today, we see countless news articles, television and radio programs, and a vast number of accounts of death and dying experiences every day – and not just about MAID.  Whether it’s stories about reclaiming death (e.g. death doulas, green burials, living funerals), coverage of the “slow medicine” movement resisting highly medicalized geriatric and end-of-life care, or the debate surrounding legislation such as Bill C-277, An Act Providing for the Development of a Framework on Palliative Care in Canada, it’s clear that change is in the air.

How have these changes affected Canadians’ experiences of death and dying? Certainly nothing so earth-shattering as an end of death itself has occurred. What has been the impact of these developments on families across Canada? How do factors of race, indigeneity, income, location, gender and sexual identity, among others, continue to determine people’s experiences of death?

Despite the significant evolution in the conversations on death and dying, most Canadians approach death with some measure of fear, ignorance and dread. Thus, major sections from the 2013 edition of this report remain substantially the same, with updated information and statistics. Most people still wish they could avoid death. For the most part, Canadians have not heeded Mary Oliver’s sage advice to embrace each day of our “one wild and precious life.”

For the full report, click this link: http://vanierinstitute.ca/death-becoming-less-taboo/

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The report is out! Here’s the link: Family Perspectives: Death and Dying in Canada

It’s wonderful to have it launched on the first day of Hospice Palliative Care Week!

Enjoy!

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https://www.thespec.com/living-story/8077999-in-denial-about-death/

When I was doing research for my book “I don’t have time for this!” I created a number of google alerts on death and dying, palliative care, medical aid in dying, and elderly parents. I’ve kept those alerts active and, as a result, I receive a daily digest of all the relevant Canadian media items on these topics. I realize this probably makes me seem even weirder than I probably already did, but it’s given me access to articles and news stories I would not otherwise have seen.

The link above is one such story – a fulsome and thoughtful article about the impact our culture’s fear and denial of death is having on the institutions (hospitals, long term care homes etc.) and families in society – and the crisis it will create in the not-too-distant future. I urge you to read it – and to consider the impact that those of us who are involved in hospice care are having in breaking the silence around death and dying.

On another note, I’d like to welcome all the new followers to this blog, many of whom hail from countries where the fear of death is not so prominent. I would love to hear from followers new and not so new, about your own experiences of death and dying. Feel free to comment here – if  you have something more lengthy that you might wish to contribute, please send it my way so that I can consider including it on this blog.

If you’ve just happened upon this blog for the first time, please consider following it – there should be a button near the bottom right corner where you can click. I promise I will not be flooding your inbox. Also, feel free to scroll through the archive of postings and respond to topics from the past.

 

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I wrote the blog post below six years ago, as I faced the month of Christmas cheer (and excess) with which we are inundated, regardless of our religious faith or lack thereof. Each year, I find myself re-reading this post, as I remind myself that many many people find this time of year difficult. The loss of a loved one, an illness, an estrangement, painful memories, or longing for the memories of years gone by. And for many of us, the memories co-exist with the happy times and new traditions we have with grandchildren, friends, companions, and colleagues.

This piece is a reminder to all of us to think about those for whom this season is a challenging one.

**********

You can’t miss the fact that we are approaching Christmas, even if you tried to. Elevators and malls pump out Christmas tunes, newspapers and flyers are full of ads for the newest toys, gadgets, and must-haves. ‘Tis the season to be jolly, we are repeatedly reminded, in case we had forgotten.

But what about those people for whom Christmas is not a season of joy? Many of us set aside food and sundries for homeless shelters, buy toys for underprivileged children, send an extra donation to our favourite charities. It’s great that Christmas provides an opportunity for generosity and gratitude and I have no doubt that these actions do make a different, however small, in people’s lives. Today, though, I am thinking about a largely invisible population – people for whom Christmas has lost some of its magic, whether because of serious illness, a painful separation, or the death of someone they love. Where in this season is the place for these people amidst the shopping and celebration and feasting?

I grew up in a family where Christmas was a “big deal.” Though the gift giving would pale in comparison to the extravagances many people engage in today, still our annual rituals of new vinyl records, a new dressing gown (with a crisp new $5 bill in the pocket), a silver dollar in our stockings, the obligatory item or two of clothing, and a few “special gifts” for each of us. I can still remember the amazing service station complete with car elevator that I received when I was 10. The fact that my not very handy father had spent half the night trying to put it together made the gift all that more special. I’m certain that my sisters have equally vivid memories of their favourite gifts.

When grandchildren arrived, my mother got the chance to embrace Christmas full force. She loved buying special fancy clothing for her four granddaughters, and to “spoil” my daughters with elaborate toys I couldn’t afford. She was in her element filling stockings with trinkets she had found throughout the year – and expensive necessities (a roll of stamps, a pack of subway tokens, bookstore gift certificates).

All that changed when my mother suffered a brain aneurysm in 1991. Though she survived the aneurysm, she was left with considerable brain damage, and could no longer walk, speak clearly, or care for herself. Shopping for Christmas was clearly out of the question. Without our mother’s zest for Christmas, something was missing in “family Christmas.” It wasn’t about the presents – it was about how much my mother loved giving them. She took so much joy in being able to surprise us, to help us, to make us happy.

When my sister Carol died in 1997, “family Christmas” seemed to end.  Carol was that person in your life who always knew exactly what you needed, even though you didn’t know it until the you opened up the present. A set of dinosaur rubber stamps for my older daughter who loved dinosaurs and writing stories. A kit to make beads from wrapping paper. A beautiful sweater suitable for work for me (no one but Carol ever dared to buy me clothing). As with my mother, it wasn’t the gifts themselves that mattered. It was the fact that she knew us SO well.

It’s not that Christmas stopped after my mother became ill and my sister died. But that particular carefree (for me!), joyful, special family Christmas did.

Strangely, it’s through volunteering in hospice that Christmas was transformed yet again. Each year, the hospice asks people to take on extra shifts, as regular volunteers fly off for family gatherings or stay home to cook and be with their own families. The year I graduated from the hospice course (2001) I eagerly signed up for extra shifts. I expected the hospice to be a sad and dreary place, as families celebrated their last Christmas together, or their prepared for their first Christmas without Mom (or Dad).

When I walked into the residence that year, I could hear singing coming out of Room 4. Jingle Bells. Joy to the World.

“Who’s being so inappropriate as to sing Christmas carols,” I wondered. I soon discovered my answer. Room four was filled with family, bearing gifts, shaking Christmas bells, trimming the tiny tree placed on the nightstand. And sitting up in the hospital bed was the queen of the day, wearing a Santa cap jauntily placed on her head, and joining in the festivities.

“You folks sure know how to celebrate,” I remarked.

“Oh yes. That’s the kind of family we are. Since she can’t come home for Christmas, we brought Christmas to her!”

I have never forgotten that image, though it’s been 11 years. Joy in the midst of dying. Celebration of life.

I learned that year that many patients “hold on” until Christmas, dying shortly after. My own mother waited so she could be with her family one last time. It is indeed a special time – not because of the presents, or the turkey, or even the beautiful music. It is special because it is a celebration of life – new life – and life well lived. And so, as I approach this holiday month, I’ll remember those faces in Room 4 that day, their joy and cheer and love. And hold all of this in my heart.

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Hallowe’en is almost upon us and (coincidentally) Ottawa will be host to two death cafés!

The first one will take place at the May Court Hospice on Monday October 30. Registration is required so please contact: deathcafeottawa@gmail.com

See the death cafe website for more information.

https://www.facebook.com/deathcafeottawa/?rc=p

The second event will take place on Wednesday November 1st at the Art House Cafe:

COFFEE, CAKE AND MORTALITY
Death Café. A sequel.

Death Café? Ask the uninitiated what images those words evoke, and they’ll say morbid talk, the wringing of hands, and tears shed over coffee and cake. But they couldn’t be more wrong.
In early November a small group of people, led by Marit Quist-Corbett, will meet at The Art House Café on Somerset Street. Yes, there’ll be coffee and cake, but also laughter among friends and strangers as they discuss those often-taboo subjects of death, dying and mortality in a positive and open discussion.

WHERE: The Art House Café, 555 Somerset Street (kitty corner from Dundonald Park).
WHEN: Wednesday, November 1st, 1pm to 3pm
For more information, please call or email one of the following:
Marit Quist-Corbett,  mquistycorbett@gmail.com

 

I’m hoping to attend both events so perhaps I’ll see you there! I won’t be wearing my Hallowe’en costume (Spider-Granny) – too hard to eat cake with it on!

 

 

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I’ve been doing lots of reading about death and dying over the past months (so what else is new? you are saying to yourself, I’m sure) and I enjoy sharing some of the great articles I come across. Much of the writing comes from the US – and the differences between our two systems of health care are so great that much of what is written about hospice and end of life care is not directly relevant to Canadians. When I came across this great article from Australia, I immediately wanted to share it. Interesting to note that Australia came 2nd in the world on the rankings of end of life care. I think Canada came 9th. We have much to learn!

When life is coming to a close: three common myths about dying

Dying at home isn’t necessarily a good death

On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.

We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.


Read more – A real death: what can you expect during a loved one’s final hours?


Myth 1: positive thinking can delay death

The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.

Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.

For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.

Myth 2: dying at home means a good death

The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.

The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.


Read more: To die at home or in hospital? Aussies want one but we fund the other


It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.

Myth 3: pushing on with futile treatment can’t hurt

A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.

There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.


Read more: Doctors still provide too many dying patients with needless treatment


The story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.

 

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Dr. Ira Byock is an American leader in hospice palliative care and a passionate advocate for end of life care. His first book, Dying Well, was released 20 years ago and it’s a remarkable book for its time and indeed for any time.

Earlier today, I listened to a discussion with Dr. Byock held in celebration of the book’s 20th anniversary. I wanted to share the link with readers of this blog – I think you’ll find  it as inspirational as I did.

https://iteleseminar.com/100035084?mc_cid=8f0593f849&mc_eid=[UNIQID

 

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