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Archive for the ‘palliative care’ Category

There’s been lots going on in my life in the past couple of months – and I haven’t been writing as much as I’d like. But I have been reading, listening and talking about end of life care, death and dying, and I’ve been sharing some of the amazing resources I’ve discovered. As I write this, I’m listening to a fabulous interview with Dr. Susan MacDonald, the medical director of palliative care for Eastern Health. She’s an amazing, passionate advocate for palliative care, and she explains things with a clarity and understanding that’s rare.

Here’s the link:

http://www.cbc.ca/news/canada/newfoundland-labrador/tedwalks-podcast-susan-macdonald-1.4279306

She’s funny, bright, wise, and very forthright. I’d love to meet her!

The interview is particularly timely for me because this past week I found myself engaged in a discussion with the RN and PSW on my shift. It was a quiet shift, and we had the time to talk in a way we don’t often have. Issues ranging from the differences between palliative care and hospice (if there are any!), the reasons why people with heart failure tend not to be referred for palliative care, and and why people often think that opting for palliative care means “giving up.” It was a great conversation, and it was wonderful for me to be able to share some of what I’ve learned in my research and writing.

The discussion left me wishing that we had more opportunities to talk as a team, to share our different perspectives and to bring our unique insights to the team.

So please listen to this wonderful interview – and feel free to share your comments.

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Dr. Ira Byock is an American leader in hospice palliative care and a passionate advocate for end of life care. His first book, Dying Well, was released 20 years ago and it’s a remarkable book for its time and indeed for any time.

Earlier today, I listened to a discussion with Dr. Byock held in celebration of the book’s 20th anniversary. I wanted to share the link with readers of this blog – I think you’ll find  it as inspirational as I did.

https://iteleseminar.com/100035084?mc_cid=8f0593f849&mc_eid=[UNIQID

 

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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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My last post – a death in the family – has had an amazing ride over the past five days! After I posted it on Facebook, I tried to “boost” it to reach more people and for some bizarre reason, FB deemed it to be unsuitable, objectionable content – they refused the ad and removed the message from Facebook! Magically, it reappeared a day later (perhaps because I appealed, though I doubt it!) And since then, an amazing number of people have read the post about my aunt’s last days. I am enormously gratified by the response and so glad my story reached so many people. Thanks to all of you!

It’s been a busy week, because this is National Hospice Palliative Care week. I participated on a webinar for the Canadian Hospice Palliative Care Association on living well, right to the end. Here’s the link to the show (I’m the first speaker, right after the introduction). I hope you enjoy it!

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Today is March 8th, International Women’s Day. So it seems appropriate to share this article about Dame Cicely Saunders, the founder of St. Christopher’s House in London and a pioneer in the modern hospice movement. Many people involved in hospice palliative care work in Canada and elsewhere were inspired by her work and her life. Dr. Balfour Mount (the Montreal physician who established the first palliative care unit and coined the term palliative care) and Dr. John Seely (a champion of palliative care in Ottawa and friend and colleague of Dr. Mount) both visited Cicely Saunders in London and saw first hand the importance of her work.

So today, I am grateful for Dame Cicely Saunders and the many many women who came before us, who paged the way for our work today, and shone a light on the possibilities of the future.

http://endoflifestudies.academicblogs.co.uk/celebrating-the-life-of-cicely-saunders-on-international-womens-day-by-david-clark/

 

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Before I start this post, I want to share with you an amazing podcast from the BBC that I came across recently. Here’s the link:

We need to talk about death

You can listen to it on your computer, or download the podcast and keep up with all the episodes as they are posted. There are two at the moment and they are truly wonderful. The instigator and narrator is a wonderful British woman in her 80s. She’s gathered a small panel of “experts” – people who have thought a great deal about death during their lives. The first episode talks about the importance of facing our fears of death and dying. The second focusses on pain. I wish I could sit down with all of you and listen to it together – and then talk about our own thoughts, feelings, and reactions. We seem to have so few places to talk about such things.

If you’re a regular reader of this blog, you’ve probably noticed that I haven’t posted in nearly two months. I could tell you that I’ve been busy, that life’s gotten in the way, that I’ve been working hard on other things, and, while all that would be true, it’s not the real reason I’ve been silent.

The real reason is because I’ve been struggling to find the meaning in the work I am doing as a hospice volunteer. It’s not that I’ve lost the calling. That’s something I’ve felt since I first walked into the hospice where I still volunteer. It’s something I’ve known since my sister told me “You’re going to be an expert at this by the time you’re done with me,” shortly before she died. While I certainly didn’t want to learn how to be with dying from my sister, she was, as always, an excellent teacher.

I feel honoured to be able to help dying people and their families. I treasure the conversations we have had over the past 15 years – and I hold deep within my heart the memory of the people with whom I’ve sat as they took their last breath.

But increasingly – slowly over time and, of late, more frequently – I’ve found myself confronted with more and more rules and restrictions, tasks and prohibitions. Seldom do I seem to have the time to sit with someone who is dying. Or to retreat to the sun room to have a chat with a family member who is having a hard time. Instead, I’m in the kitchen, loading the dishwasher (or waiting for it to be finished!), rushing to answer the phone or fix someone’s lunch.

I have never minded the quotidian tasks that are part and parcel of volunteering – I’ve become quite the expert at making jello, grilled cheese sandwiches, scrambled eggs (though not poached, after all these years). Those things have been part and parcel of the services we do. My struggle has been that we are faced with an increasing number of rules about how things must be done and what we must do to the point where I wonder if “being with dying” is actually part of our “job.”

Perhaps you’ll think I’m complaining – or being unrealistic about the degree to which organizations must change when they advance from their “pioneering phase.” But when I listen to people talk as they do on the BBC program mentioned above, I am reminded once again of the reason why I became a hospice volunteer – and I mourn what seems lost in the process of  growing, consolidating, and institutionalizing.

From my casual conversations during shift changes and with friends, I know I’m not alone in these feelings. I wonder if any of you readers out there might feel the same.

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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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