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Archive for the ‘end of life 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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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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I’ve been very quiet on this site over the past few months and it’s not just because I’ve been busy with writing or travelling or recovering from one bug or another. It’s because I’ve been stopping myself from saying what I’m about to write.

I’ve been a hospice volunteer for 16 and a half years. That’s a long time – and I proudly tell people about it at every opportunity I get. When I tell someone at hospice (usually a family member who asks how long I’ve been there) that I’ve been volunteering this long, they are always amazed – not at how wonderful I am (though of course I am – hahaha!) but at what a good place the hospice must be to have such dedicated volunteers. I suspect those readers of this blog who are volunteers have had the same experience.

But – and here’s the but I’ve not been writing about – increasingly I’ve come to question what my role at the hospice really is. As I’ve written before, one of the reasons I chose to volunteer in the residence was because I wanted to be part of a team. As an introvert and a writer (they do often go together I find!), I spend a lot of time alone. And I felt reassured that I would be working with a community of volunteers and staff to care for residents and their families.

In the early years, that is exactly how it felt. I still remember my Monday morning shifts. My “buddy” Alex and I  would arrive at 9 for our shift and invariably one of the staff would say something like, “Oh it’s Monday – I knew it would be a good day because you two would be on with me!” And I felt instantly appreciated. Often I’d get a hug when I arrived, and a thank you hug as I left to start the rest of my day.

Very often now, when I arrive, no one says hello. I sit with the volunteer I’m relieving and we do our report. She’s always happy to see me, so in that way I feel welcomed. But more often than not, a staff member will come into the room while we’re doing report and tell us of a lunch order, or someone who needs juice, or a task that needs doing. I’ve developed a self-protective habit of not going to do anything until I have familiarized myself with who is in the residence and what their needs and abilities are. And because as I’ve aged over the years (how did that happen?) I can’t remember the food orders as easily, so I will ask the staff member to write it down for me or to wait until I’ve done with what I’m doing.

Many weeks now, I find myself caught up in cooking, cleaning, emptying and loading the dishwasher, and find that at the end of my shift I haven’t had time to sit with a single patient. I might have talked briefly with a family member while I’m making someone’s lunch, but I haven’t really had time to engage in a “real” conversation or to let them know that I am really there for them, that that’s the most important thing I can be doing.

I recognize that once the “pioneering” days are over, institutions can become more routinized, with tasks being divided up in a silo manner, with each role having a specific set of tasks, and very little sharing of tasks happening between people. So, getting juice or ice water or tea or food are all tasks of the volunteer – even if that volunteer happens to be sitting with a dying person or talking to a distraught family member.

To me that seems like we’ve somehow lots a sense of real role and value of hospice volunteers. We are not (or shouldn’t be) unpaid personal support workers or cooks or cleaners – though I don’t think any of those tasks is somehow “beneath” me. I believe we are at hospice to support dying people and their families. We bring a wealth of experience – at work and in life – that can serve the people who come to our hospice. I don’t want to feel like I’m somehow slacking off if I spend a little extra time talking to a volunteer or to a family member. And at times, I’ve felt that some staff see my “merely” sitting as just that – wasting time.

Over the years, and especially lately, other volunteers have shared these concerns with me. Being an old-timer, I’m not afraid to share our concerns with the volunteer coordinator or other senior administrative staff. Though I’ve found a sympathetic ear, I’ve never seen any real change happen. And it leaves me, frankly, discouraged.

I still tell others what an amazing place the hospice is. I write and publish work that advocates for the expansion of hospice and palliative care services. But this nagging feeling remains. So I’m writing this today because I don’t want to remain silent any more. Perhaps some of you can offer guidance, ideas, or advice. I look forward to hearing from you. And I feel better for having finally written this!

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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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