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Posts Tagged ‘hospice care’

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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When I first started volunteering in a residential hospice 15 years ago, most people I encountered had never even heard of a hospice. When I told them it was a place that provided end of life care for dying patients and their families, they looked at me with a strange combination of horror and disbelief.

“You must be a saint!” people would say, stepping back slightly to avoid the glare from my halo. “I could NEVER do what you do,” they would add, though they actually had no idea what I did.

“Don’t you find it depressing?” was their closing question, perhaps their way of explaining why they could never take my place.

“Actually, it’s the most hopeful part of my week,” I would say, ready to offer an explanation to the questions that never came.

Fifteen years later, people are still a little surprised when I say I volunteer in a hospice. But instead of distancing themselves by putting me on a saintly pedestal, more often than not they ask me what exactly what a hospice volunteer does. They listen with interest as I describe a typical shift, which can involve everything from helping to give a bed bath to making poached eggs and toast, brewing pots of Tim Horton’s coffee, and listening to a grieving family member anticipating the loss of her sister.

Our work is both hands-on and open-hearted, I explain. I’m a short-order chief cook and bottle washer, a hand holder, and a singer of hymns. I’m a listener and a tour guide, a companion, and a witness. And I never know which among those roles I’ll play on any given day.

More often than not, people listen intently as I explain the nature of our work. While some still assure me that they could never do what I do, many say they might think of doing something like this, once they have the time.

I like to think that my being a hospice volunteer – and talking and writing about my work – is playing a small part in opening up discussions about death and dying in my community and beyond. Certainly I encounter more and more like-minded people on Facebook, at community gatherings, even at the movies. I believe that we are opening up essential conversations about how we want to live our lives and how we would like to approach our deaths.

As always, I’d love to hear what readers think about my writing here – I hope if you find it meaningful, you’ll share this blog with others, through your social media connections and elsewhere. I hope you’ll join me in these essential conversations about living and dying.

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It’s 2017, so they tell me, though I have been laid up in bed since late December with a nasty virus, and have trouble remembering which day of the week it is.

In a few days it will be 20 years since my sister Carol was diagnosed with the virulent cancer that would take her life 6 months later, on July 4, 1997. I had just begun a well deserved and much needed sabbatical and was busy making plans for a research trip when my sister called to say that the cancer was back.

“Fuck, Fuck, FUCK,” I said, when she told me.

“Don’t say that,” she said.

“But it’s just not fair! You’ve done so well! Fuck, fuck, fuck,” I said again, the only words that seemed to capture the extent of my anger and grief and shock.

“Don’t say that,” she said. “It just makes it harder for me.”

“OK,” I agreed. “I’ll be on the first train tomorrow to see you.”

And so it began. The 6 month “journey” in cancerland – through endless visits to doctors and hospitals, CT scans and MRIs, biopsies, and surgery. Vomiting and K-basins. Fear. And always pain. And finally death.

So many of the details of those six months are still vivid in my mind and my heart. The endless waiting for results, the parade of PSWs and “sitters.” Dozens upon dozens of phone calls on pay phones, in the days long before cell phones. And countless conversations with Carol about what she wanted and needed. I would have done anything I could have for her. And in the end it was never enough.

Shortly after she died, I began to tell people that I had been transformed by Carol’s death. I didn’t really know what it meant, but I knew it was true. I was no longer running away from death. Four years later, I would begin what became my 15 year journey as a hospice volunteer. “My sister works through me,” I would tell friends when I first began my volunteer work with dying people and their families. Sometimes I could almost hear her telling me, “Slow down. There’s nothing you have to do. Just listen to their stories.” And I did.

And I still do, all these 20 years later. I also write and talk and speak at conferences and churches and meeting halls. I look for opportunities to share my book about caring for my sister and my elderly parents, in hopes that I can help others who are facing this challenging time in their lives.

When I first began volunteering at hospice, friends would look at me strangely as I would wax eloquent about my volunteering. Some thought it morbid, others that I was courting depression in being with dying people week after week. Few would believe me when I told them my time at hospice was the most hopeful part of my week.

More often now, people ask me what I do at hospice – what it’s like giving care to dying people, and talking with their families. More and more, of course, friends and strangers alike have experienced the death of someone they love. Or they are watching their aging parents coming to terms with their loss of independence and failing health. Perhaps they have received a difficult diagnosis themselves. Now they too want to talk about death and dying.

And so I will continue to write, here and elsewhere, about life and death. I’ll read the latest books on the subject from the library, and watch movies about “d and d.” I’ll continue to give talks wherever I can,  and I’ll look forward to hearing other people’s stories.

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I want to share the link to a fabulous article about the Zen Hospice in San Francisco and its amazing Executive Director, B J Miller. I had the chance to visit the hospice in 2005 and to spend time talking with one of the staff members about their approach. I will never forget our saying –  almost in unison –  that “dying is a spiritual activity.” We both smiled at the simple truth held in that phrase. Far too often in Western society, death has become a medical event, removed from life.

Read this story to the end – it’s enormously moving and for me, exemplifies what hospice care is all about.

 

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Last Thursday, October 13th, was International Hospice Palliative Care day. And in Canada, this is national Hospice Palliative Care month. Each week, the Canadian Hospice Palliative Care Association is reminding us of the importance of talking about death and dying, advance care directives, and the need for access to hospice palliative care.

Last Friday, I gave a keynote address to the Bereavement Ontario Network at Geneva Park near Orillia. It was wonderful to have the change to talk about the history of death and dying and current and future trends in death, dying, and bereavement. (In case you were wondering where I had disappeared to, I was madly writing my talk right up until the deadline!)

Before I head off to my hospice shift today, I wanted to share this article, written by an Irish woman, about she and her family’s failure to talk to their mother about her impending death. It’s a great reminder to all of us to talk about what we and the people we love want at the end of our lives (and about the fact that death can happen at any time, not just many many years from now when we are very old!)

‘I regret not talking to my mother about her death, don’t do the same thing’

Talk to the people you love – your children, your parents, your siblings, your friends. Don’t wait until it’s too late!

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An article I wrote was just published on a wonderful site called KevinMD. Here’s the link:

http://www.kevinmd.com/blog/2016/09/helping-hospice-present-much-important-busy.html

As always, I’d love to hear your thoughts.

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https://www.thestar.com/opinion/commentary/2016/08/30/first-step-to-improving-palliative-care-change-its-name.html

A recent article in the Toronto Star suggests that we should change the name of palliative care – perhaps to supportive care – in order to encourage people to seek out care early on in their illness. I’ve seen similar articles in the US as well, arguing that palliative care and hospice care scare people off – presumably because of their association with death.

As an historian and long-time hospice volunteer, I think we should celebrate the contribution that Canadians have made to end of life care. That includes celebrating Dr. Balfour Mount, the pioneering Montreal physician who coined the term palliative care back in the 1975. I’m proud of what we’ve accomplished in Canada and I’m happy to tell people about it.

What do you think?

 

 

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