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!

This letter, by writer Peter DeMarco, to the people who cared for his wife in her final days, reminds me of the quality of care we provide for dying people and their families in hospice.


Yesterday, I had the opportunity to be part of the first annual Provincetown Book Festival. There were wonderful readings by poets, novelists, memoirists, and others, great discussions, and a book fair, where authors displayed and sold their books. Along with 14 other authors, I spent the beautiful sunny day sharing my work and selling and signing my book.

I was a little concerned that people in a vacation spot like Provincetown might not be interested in buying a book about caregiving, death and dying. What surprised me was how many people shared their own stories with me – deeply personal intimate stories of illness, caring for parents, and coming to terms with death.

Many of the people who approached my table shook their heads when I told them what the book was about – not because they weren’t interested, but because their parents were dead. “I cared for my parents into their nineties,” one woman said. “And we cared for my partner’s parents too. It was a long stretch.”

Not surprisingly, given the fact that daughters by far and away do the work of caregiving in comparison to sons, most of the people who stayed to talk with me were women. Now in their 60s, they were beginning to think about their own aging process, and who might care for them. “I better give that book to my kids,” one woman laughed. “It’ll be their turn soon.”

For those women who don’t have offspring to whom they can turn, the options may be more limited. Nieces (and nephews) may be willing to take up the task of caring for their aging aunts (and uncles) – but it’s likely they’ll have their own parents to worry about already.

As Baby Boomers, many of us are fiercely independent, and dread the thought of becoming a burden on our children or family members. I urge readers of my book to begin talking about these issues now, before it’s too late, and we find ourselves in a state of emergency. What heartened me about yesterday was how many people were more than willing to have these discussions – with one another, with other people who approached my table (and my fellow writers, and with me.

A couple of women who came by the table said that the topic of my book was just too close to home. Two women had recently been diagnosed with cancer, and were undergoing treatment. A stark reminder of how present cancer and other illnesses are in all our lives.

This willingness to talk openly about life and death is one of the reasons why I love being in Provincetown. Yes, lots of people are here to spend their days at the beach, before relaxing at the tea dances, restaurants, and bars, but many others still carry the memories and images of how AIDS devastated this town in the 80s and 90s. Provincetown has a higher proportion of people with HIV/AIDS than the rest of the country, and year round Provincetown residents work with and support the services that sustain people with HIV/AIDS. They are more than willing to share their stories with me over a glass of wine at the bar where I love to write.

Sometimes I worry that too many people have their heads buried in the sand when it comes to illness, death and dying (as in, if I don’t talk about it, it won’t get me!) Being able to have talks such as the ones I’ve had here in Provincetown give me hope that some people are embracing the opportunities to talk.

PS: The book fair got terrific coverage in the Cape Cod Sunday Times!

Here’s the link to the story:



Food is love

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


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

Hospice Humour

When I first began volunteering in hospice, I imagined that it would be a very sad and somber place. How could it not be, given that it’s a place where people come to die? I imagined that people would speak in hushed tones, people would be routinely sobbing in the halls, and laughter would rarely be heard.

From the first time I entered the residence, I quickly learned how wrong I had been. From receiving hugs of welcome from the staff and my new hospice buddy, to joking with a resident as we looked through her photo album, I learned that hospice was also a place where people were living fully until they died. Over the years, I’ve heard countless jokes and silly stories, I’ve watched comedies on television, and I’ve joked about Jell-o, my pathetic attempts at making poached eggs, and my height (4′ 10 1/2″). I’ve seen residents wearing Santa hats and sharing Christmas festivities and singing songs with their families and staff.

A small example. Earlier this week I popped in to say hello to Sam (a new resident) and his visitor (who, it turned out, I knew from many years ago). The visitor told me that Sam was very impressed that we have some male volunteers – and even a man who played the guitar and sang.

“You should sing for us,” Sam said.

I paused, not sure how to respond, since I tend to reserve my singing for patients who are actively dying.

“I do sing,” I finally said, “though it’s usually much closer to the end, and I don’t think you’re in any hurry to get there!”

Sam and his visitor broke into gales of laughter – relieving any concern I had that I’d said something inappropriate.

Yes, compared to a hospital, the hospice does tend to be quieter – much less hustle and bustle and busyness. But it is also filled with life and love, compassion and caring – and laughter. And that’s another reason why I am a hospice volunteer.



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?



This is why we are here

When my father was dying, I often found myself saying, “I wish someone would tell me how this ends.” It wouldn’t take more than a minute before I’d catch myself. I knew very well how it would end. I knew it would only end when my father died. Whether peacefully (as it mercifully turned out) or with enormous suffering (as I rarely see at hospice), it ends in death.

And the fact was, I wasn’t ready for him to die yet. He was still of sound mind – at 94 – though his body had begun to fail. He was no longer able to go to a restaurant to eat dinner – one of our favourite activities. Eventually he stopped having “cocktail hour” with me – the only one of his four daughters who enjoyed this ritual with him. Still, we could sit and watch television together – Who wants to be a millionaire? Golf and curling – things I relished with him and would not be caught watching otherwise. I clung to those shared rituals like a drowning woman. Indeed, most days I felt like I was drowning.

Anything was better than losing my father – this man of wisdom, of knowledge, of family history.

Like the families I meet each week at hospice, I knew all too well where this was leading – but the routines of caregiving, be they cooking or grocery shopping or making phone calls, can distract us however briefly from the ultimate point of this journey. The person we love is dying. The person we love will no longer be in our lives. The person we love will leave us – forever.

Somehow we have to balance that knowledge along with carrying on the activities of caregiving. In fact, those activities are essential to providing care and maintaining our own sanity.

Soon enough we will experience what one family recently termed a “wake-up call.” When I asked him what he meant, he spoke eloquently about the impact that another patient’s death had had on him. “This is why we’re here,” he said. Not that he had really forgotten. Not that any of us is likely to forget for long.

And so we do our best, showing up as our best selves. This is what I hope I did for my father. And it is what I see families doing, week after week, at the hospice where I volunteer.



Last Comforts

Notes from the Forefront of Late-Life Care


Offbeat stories and essays about what people facing loss ponder, value, and believe.

Your Own Good Death

life matters- talk about death

Jane Eaton Hamilton

"...self-expression over self-destruction..." Lidia Yuknavitch


Reflections from my life as a mother, grandmother, midwife, farmer, buddhist, teacher, vagabond and hospice nurse...

The fragile and the wild

Ethics, ecology and other enticements for a stalled writer

Rampant with Memory

completed moments stamped

Heart Poems

How poetry can speak to you

Linda Vanderlee • Living Aligned

Personal, Leadership & Team Development

Writingalife's Blog

Just another WordPress.com weblog


Just another WordPress.com site

Hospice Volunteering

A blog about volunteering in hospice care


The Blog of the European Association of Palliative Care (onlus)

Rampant with Memory

completed moments stamped


Where Volunteer Managers can talk

Hospice and Nursing Homes Blog

A blog about volunteering in hospice care