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Archive for the ‘palliative care’ Category

Recently, I gave a talk to the +55 Multi Cultural Seniors’ Club Program at Foster Farm Community Centre. When I walked into the venue, I was a little surprised to hear loud music and to see a group of some 35 people doing dance moves in response to the commands of a very enthusiastic man at the front of the room. Since it was 5 to 11 when I arrived (and my talk was to begin at 11!) I was a little concerned that I might be at the wrong place!

But soon, the instructor gave a command in Chinese, which I gathered was telling people it was time to talk their places at the tables set up around the room. As I looked around, I realized that everyone (with the exception of one table, and they seemed to be Syrian) was Chinese!

I looked at my carefully prepared talk and readings from my book with some amount of trepidation. How would I ever get my message across? Just then, a woman approached me, assuring that she would translate. “Don’t worry,” she said. “I used to work as a translator for many years. It will be fine!!”

And so I began. It was an entirely new experience for me to engage with an audience in two sentence bites. I would say a couple of sentences, or ask a question – then everyone would look to the translator, who would talk for a length of time. Then everyone would nod, or give me a thumbs-up.

Obviously I had to improvise a great deal – the text was abandoned, and on the spot I figured out what were the essential things I wanted to get across to this lively group of 70 and 80 plus year old people.

Every so often, a small group would start talking among themselves and I wondered whether they were talking about me, my talk, or something else entirely. Then I said to myself, does it really matter, as long as they are having a good time?

After the talk was over (and before the Chinese pot-luck feast they had prepared), several people, one by one, came up to speak to me. Some just shook my hand to thank me for coming. One of the few men in attendance told me how important it was to raise these issues of caregiving and end of life with his group! Another woman told me she had been a biology professor and that her mother had died at 104! The woman who had translated told me proudly that she was 85 – and not for the first time, I envied the fact that Chinese people seem to never show their age!

As I packed up my things and prepared to leave, the group resumed their dancing. In the end I think I did make an impression on the audience, and I congratulated myself for being able to dance in the moment!

I hope I get more opportunities to reach out to communities I might never otherwise meet!

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On the final day of the International Congress, I attended two sessions about providing palliative care to underserved populations. This term refers to a wide range of people including prisoners, those traditionally referred to as homeless (whether living on the street, in a mission or shelter, or underhoused in precarious housing). What I like about the terms underhoused and underserved is that it removes the automatic judgement so frequently attached to people who lack access to services that most of us take for granted, as if this lack were entirely their fault.

The commitment of the speakers I heard in these sessions reminds me of the words of Dame Cicely Saunders, founder of St. Christopher’s House in London and considered to be the founder of the hospice movement. Her phrase was cited often at the Congress as it is by hospices throughout the world.

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” Cicely Saunders

Researchers and palliative care activists Kelli Stajduhar (Victoria), Naheed Dosani (Inner City Health Associates in Toronto and co-founder of the Journey Home Hospice in that city), and Simon Colgan (Alberta Health Services, Calgary) spoke passionately about the work they are doing and what it will take to achiever equality in palliative care access and services in this country. I have heard Dr. Dosani speak before and I would highly recommend that readers familiarize themselves with his work (and hear him speak if you get the chance!) To read about Journey Home, visit their website. https://journeyhomehospice.ca/

All three speakers demonstrated the blatant and sometimes subtle ways in which access to palliative care is denied to people who lack access to housing and other social services. Without a fixed address, for example, people are often denied disability and welfare benefits, as well as a  health care card (which is required to receive provincial health care services). Through the Journey Home Hospice (Toronto), like the Mission Hospice in Ottawa, and May’s Place (in downtown Eastside Vancouver) people who can’t access traditional hospice services can receive the care and dignity to the end of their lives that Dame Cicely Saunders envisioned.

As readers can no doubt tell, I was inspired by the words and work of those who are working to ensure access to hospice palliative care to everyone, regardless of their social status, race, citizenship or nationality. I will be looking for ways to support the amazing work that they do.

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I promised I would write more about my experiences at the Palliative Care Congress and though it’s been more than the few promised days since I last wrote, I’m determined to document a few of the amazing sessions I attended.

Although I typically seek out sessions on volunteer issues, this time I decided to branch out and seek out sessions on palliative care for underserved population. The first such session was on palliative care during humanitarian crises. Even the title boggled my mind. What must it be like to provide palliative care in the midst of the chaos of war, conflict, forced evacuation?

In the first paper, Dr. Anna Voeuk from the University of Alberta talked about her experiences working in an emergency field hospital in Northern Iraq. Voeuk’s passionate presentation documented the range of crises health care workers faced and the need to triage incoming cases with those who could not be saved being given the designation of black, as workers turned their attention to the cases that might benefit from their care. Voeuk added that her field hospital had decided that no one would be left to die alone – a staff members, ranging from cleaners to physicians, would take turns sitting with a dying person until they passed, a moving example of humanity even in the face of war and mass casualties.

Dr. Voeuk also talked about the need for resilience, flexibility, and creative problem solving in order to meet the needs of their patients. Lacking essential medications and equipment, physicians would improvise to set broken limbs, control pain, and fight infection.

Equally inspiring was the presentation by Dr. Megan Doherty, a pediatric palliative care physician  at Children’s Hospital of Eastern Ontario (CHEO) and Ottawa’s Roger Neilson House, who  served for three years in the Rohingya refugee camps in Bengladesh. Doherty described the conditions among the 919,000 Rohingya people, 60 per cent of whom are between the ages of zero and 15. Dr. Doherty continues to divide her time between her work in Ottawa and in Bengladesh, providing training and care under extremely challenging circumstances.

I would have wished for the chance to ask Drs. Voeuk and Doherty what had motivated them to offer their services to humanitarian crises, and what impact these experiences have had on their work back in Canada. The standing room only audience for their presentations was clearly as moved as I was by their contributions and dedication.

In the coming days, I’ll write about the sessions I attended on providing care for underserved populations in Canada.

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Last year I talked about an online course I was taking called dying2learn. It’s completely online, with videos, lessons, stories, and questions to ponder and respond to. I thoroughly enjoyed taking it – so stress, no exams, just a large community of people learning and sharing together. It’s international (the people who organize and run the class are in Australia) but through the wonders of the internet, people from all over the world join in!

If you’re interested in finding a place to share your thoughts, learn more about death and dying (including different traditions and cultures), and challenge (perhaps) some of your assumptions, I strongly urge you to sign up!

https://www.openlearning.com/courses/dying2learn2018/

The link to join is on the upper right hand side of the opening screen – just click on sign up! And let me know what you think!!!

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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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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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