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Posts Tagged ‘palliative care’

The National Documentary Journey Home takes you inside a groundbreaking hospice for the homeless.
— Read on www.cbc.ca/player/play/1269006915536

I heard about the plans for this Toronto Hospice last year at a conference. The work they are doing is inspiring and so important.

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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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It’s been a bit of a whirlwind this week with the release of the report on Monday and four radio interviews that morning (all before 8:20 in the morning!). It’s been wonderful sharing the report with people and initiating conversations about the importance of talking about death and dying.

On Thursday, I attended the annual palliative care education day in Ottawa. The keynote speaker was Jeremie Saunders (founder of the amazing podcast Sickboy). If you haven’t had a chance to hear Jeremie speak, I strongly advise that you check out the podcast. You can find it on I-Tunes (or wherever you get your podcasts). So far Jeremie and his co-hosts have interviewed 140 different people about the impact of their illness on their lives. Jeremie lives with cystic fibrosis, and his story and his energy, passion, and truth-telling is truly inspiring. And laugh out loud funny! Please check him out!

Today I attended Grand Rounds at the Hospice where I volunteer. Jeremie was the speaker there as well, and though I had just heard him yesterday, I enjoyed every single minute of his talk. His key AHA moments as he calls them:

  1. Be vulnerable.
  2. Life is too short for small talk.
  3. Your Actions CAN change the world.

A pretty great way to end the week!

 

 

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There’s been lots going on in my life in the past couple of months – and I haven’t been writing as much as I’d like. But I have been reading, listening and talking about end of life care, death and dying, and I’ve been sharing some of the amazing resources I’ve discovered. As I write this, I’m listening to a fabulous interview with Dr. Susan MacDonald, the medical director of palliative care for Eastern Health. She’s an amazing, passionate advocate for palliative care, and she explains things with a clarity and understanding that’s rare.

Here’s the link:

http://www.cbc.ca/news/canada/newfoundland-labrador/tedwalks-podcast-susan-macdonald-1.4279306

She’s funny, bright, wise, and very forthright. I’d love to meet her!

The interview is particularly timely for me because this past week I found myself engaged in a discussion with the RN and PSW on my shift. It was a quiet shift, and we had the time to talk in a way we don’t often have. Issues ranging from the differences between palliative care and hospice (if there are any!), the reasons why people with heart failure tend not to be referred for palliative care, and and why people often think that opting for palliative care means “giving up.” It was a great conversation, and it was wonderful for me to be able to share some of what I’ve learned in my research and writing.

The discussion left me wishing that we had more opportunities to talk as a team, to share our different perspectives and to bring our unique insights to the team.

So please listen to this wonderful interview – and feel free to share your comments.

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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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Last week, Canadians were shocked and saddened by the tragic circumstances surrounding the death of an Ottawa woman. An op-ed piece written by her husband in the Ottawa Citizen was followed by a radio interview on CBC’s Ottawa Morning. Here are the links to the article and radio story:

http://ottawacitizen.com/opinion/columnists/adams-what-my-dying-wife-and-i-never-knew-about-palliative-care

http://www.cbc.ca/news/canada/ottawa/programs/ottawamorning/palliative-care-1.4194365

The story provides graphic evidence of the shortcomings of palliative care in this country. As the Canadian Hospice Palliative Care Association has documented, only 17 to 35% of Canadians have access to hospice palliative care. Many factors result in that variation but even at the high point of 35%, the vast majority of Canadians are not receiving the care they need.

Those of us who have experienced palliative care can attest to the dramatic difference it can make in the lives of terminally ill patients and their families. As many experts have argued, palliative care should be available to patients from the onset of a life-threatening illness to help them deal with pain and other symptoms associated with their illness and to provide them with the knowledge needed to make informed choices.

When my sister was dying 20 years ago, there were (to my knowledge) no pain and symptom management teams or facilities we could access to help us with her care. It was our incredible good fortune to find an amazing palliative care nurse (through a visiting nursing service) who guided us through the final days. Her name was Isabelle (“Is a bell necessary on a bicycle?” she used to joke when I had trouble remembering her name) and she followed us from home to hospital when my sister had to be transferred. She patiently explained the significance of Cheyne-Stokes breathing (the “death rattle”) to a very frightened sister (me), offered non-judgmental advice on the choices we faced (e.g. whether oxygen might help), and reminded me that we were doing a great job.

Today, nurses like Isabelle are working in hospitals and residential hospices, and visiting patients in their homes (including long-term care facilities and retirement residences). They ease the journey towards death for both patients and their families. I wish everyone could have an Isabelle (or a Linda, Valerie, Marie, Esther … ) by their side at this difficult time in their lives.

In my view, there is nothing wrong with palliative care that greater commitment, education, financing, and access wouldn’t fix. We need greater emphasis on palliative care in medical schools and nursing programs. We need the federal government to truly commit to and fund an end of life strategy, and we need our provincial governments to ensure access to high quality hospice palliative care for all Canadians, regardless of where they live.

Until then, I fear that more people will experience the needless suffering that the article above describes. Let’s all work together to make sure that doesn’t happen.

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Today is March 8th, International Women’s Day. So it seems appropriate to share this article about Dame Cicely Saunders, the founder of St. Christopher’s House in London and a pioneer in the modern hospice movement. Many people involved in hospice palliative care work in Canada and elsewhere were inspired by her work and her life. Dr. Balfour Mount (the Montreal physician who established the first palliative care unit and coined the term palliative care) and Dr. John Seely (a champion of palliative care in Ottawa and friend and colleague of Dr. Mount) both visited Cicely Saunders in London and saw first hand the importance of her work.

So today, I am grateful for Dame Cicely Saunders and the many many women who came before us, who paged the way for our work today, and shone a light on the possibilities of the future.

http://endoflifestudies.academicblogs.co.uk/celebrating-the-life-of-cicely-saunders-on-international-womens-day-by-david-clark/

 

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