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Here’s a link to an interview with Kelli Stadjuhar, whose work with marginalized people has inspired me for years. I was fortunate to hear her at the International Congress this month. She is passionate about the way end of life care is (and is not) provided to people who live on the margins of society.

www.cbc.ca/player/play/1353794115819

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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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In Montreal for the 22nd International Congress on Palliative Care. It’s a huge conference at Montreal’s Palais des Congres with thousands of participants from all over the world. It’s easy to get overwhelmed but the cure for that feeling is to focus on the people right around you and the stories being shared by the speakers and audience alike!

I’ll share some insights over the next couple of days. My biggest highlight so far was my chat with my hero Balfour Mount, the father of Palliative Care and founder of the conference. We met at the Hospice at May Court when he was visiting his close friend, a pioneering palliative care doctor. He remembered me and our conversation in the sunroom at the Hospice and we embraced one another. Such a remarkable man!

I was excited to see one of my favourite colleague/nurses at my last session. I look forward to a very full final day tomorrow!

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www.cbc.ca/news/canada/thunder-bay/thunder-bay-hospice-northwest-volunteers-diversity-1.4772724

Perhaps a tad too far for me to drive every week! I love the way they describe the role that volunteers play.

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Often, when I am feeling downhearted or sad, as I have for the past couple of weeks since I posted “The Heart of Hospice” message, I find myself turning to music for comfort. Music has always played an important part in my life, whether it was strumming my guitar and belting out the songs of Bob Dylan and Phil Ochs, or performing feminist songs at coffee shops and rallies in my twenties, or dancing and singing with my babies. My younger daughter studied the clarinet, and played with a sensitivity and musicality that filled the house with beautiful music for many years.

In this, the final third of my life (if I’m lucky!) I’ve taken up the ukulele, a much easier instrument to transport than my guitar, and much easier to play. I bring it along to the Kindergarten class at a local inner city school where I lead the music program once a week. And I sing at every opportunity I get, whether in the choir I joined a year and a half ago, or in the NAC pop-up choir that took place last Thursday, or in my bedroom, listening to music that touches my soul.

Today, as I faced the sadness and grief I’m feeling at a change that is dramatically affecting my life, I found myself singing along with Linda Ronstadt, James Taylor, Carole King, and the music of my twenties and thirties. Sometimes I sing those songs to dying people at the hospice, as I did for my sister when she was dying 21 years ago. We shared a taste in music as we did in many things. When her best friend died of cancer not long after our mother had her brain aneurysm in 1990, Carol and I would listen to the Linda Ronstadt song, “Goodbye My Friend,” as we promised to care for one another in the years to come. (If you don’t remember or know that song, you can find it on YouTube by Googling it.)

On the day that Carol died, I sat by her bed, talking quietly and singing songs we loved. Carole King’s “You’ve got a friend” was the song I sang as she died. Singing it now carries me back to that time, and reminds me of the depth of the friendship and love we shared.

Here is the link: https://www.youtube.com/watch?v=qde5NMy7WTU

The final piece I’ve been listening to is the soundtrack from Departures, a Japanese film that is one of the most brilliant films on the subject of dying that I have ever seen. The soundtrack is beautiful, evocative, and, for me, uplifting, and I’m listening to it now as I write. Here’s the link to a review of the movie.  https://www.rogerebert.com/reviews/great-movie-departures-2009

I hope that you have music that touches your soul in good times and bad, in joy and in deep sorrow. Perhaps you can share your favourite here.

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