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Posts Tagged ‘hospice’

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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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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A month and a half ago I wrote a blog post that I entitled “Hospice volunteers: the heart of hospice.” I didn’t invent the term – it’s one I’ve encountered countless times over the years in my research, interviews with volunteers, conversations with death professionals, and visits to residential hospices. The term doesn’t mean that volunteers are the only people who provide the heart in hospice care. Rather, it points to the unique role that volunteers can play – they are the only ones whose primary role is to simply be with dying people and their families – to listen, to sit in silence, to share a book or story, to sing a favourite song, to visit the garden.

It was that role that drew me to hospice volunteering almost 17 years ago. I can still vividly remember the evening I walked into the orientation meeting. The fact that the meeting took place on September 11, 2001 could have something to do with why that evening is etched in my mind (yes, that September 11!) but it’s also the feeling I had when I entered the building. Somehow I knew I had entered sacred space (not a term I normally used, as I described myself as the “least spiritual person I know”). But there was something about the building, the space, the people who worked there, that told me something very special was happening inside.

That feeling remained with me for many years, as I volunteered in the residence each week. Though sometimes I felt that I might not be up to the task, my experiences in caring for my sister when she was dying had taught me that dying didn’t need to be scary. Indeed, when my sister died, I was by her side, singing to her, and after she breathed her last breath, I thanked her for making it “not scary.”

I’ve carried that knowledge with me ever since. And I’ve shared it with families as I accompanied them as the person they loved was dying. I’ve sat with people as they died when family couldn’t be there. And each time I’ve considered it an honour to be with someone as they left this world. And increasingly I felt that it was what I was meant to do (another phrase I never would have uttered before I became a hospice volunteer!)

After all these years, I know that it’s what I’m meant to do. As a life coach, I work with people to help them uncover their “life purpose,” something people feel they lack in this modern world of disposable everything, including jobs. Sometimes my clients will remark upon how “lucky” I am to have found my calling with hospice.  I was none too sure it was luck that brought me to hospice – more like the benefit I got from losing my beloved sister all those years ago. But yes, I would say, I am very blessed to be a hospice volunteer.

I am saying all this by way of explanation for why I wrote that post in late June. I was feeling that what the core of hospice volunteering was getting lost in all the busyness of our shifts. And as someone for whom “hope springs eternal,” I hoped that I could help us to recapture that core. In writing what I did, I never for one minute intended to point fingers at or criticize anyone. I was trying to identify a shift I felt had happened slowly over time in the culture of the place I loved.

I’m not going to detail here what’s happened since I posted that piece in late June. Suffice it to say, it’s been one of the most devastating experiences of my life (and trust me, I’ve had a few!). In the end, I chose to resign from my volunteer role with this hospice organization. Since then, I’ve been ricocheting through what Elisabeth Kubler-Ross identified as the five stages of grief, something that’s familiar to all of us in hospice work. Some days I’m bouncing between bargaining and denial. I sleep poorly, wake up remembering that I don’t have a weekly shift any more, and feel the sadness all over again.

Most days I trust that I’ll find other ways to serve dying people and their families. And in the meantime, I’m stepping up my work as a hospice palliative care activist and advocate. I’ll start visiting hospice residences that have opened since I did my original road trips a few years ago. I’ll lobby for greater access to hospice palliative care across the province and the country. And I’ll write this blog because I’m still a hospice volunteer – it’s in my heart and soul and I’ll continue to do this work wherever and whenever I can. Hospice is not a place – it’s a philosophy of care, a practice, and a way of being.

Thank you to everyone who commented on that June blog post. It meant a great deal to know I wasn’t alone. So please keep reading and sharing about the work that you do.

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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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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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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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Late last year I did an interview with Dr. Karen Wyatt, a hospice physician, speaker, author, and founder of End of Life University – a series of interviews with key figures in what has been called a movement to reclaim death and dying. The interview was great fun, as we shared our common passion for end of life care. I felt like I was having a conversation with a close friend (though we have never met!), so connected are we to improving end of life care in our two countries, and throughout the world.

Have a listen, and let me know what you think! Please feel free to share with your colleagues, friends, and fellow hospice volunteers.

http://www.eoluniversity.com/apps/blog/show/45144022-lessons-from-a-hospice-volunteer-with-katherine-arnup-phd

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