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Posts Tagged ‘palliative care’

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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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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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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In the past few weeks, I have sat with a number of patients as they were dying. As a hospice volunteer, one of my most important roles is to be with people nearing the end of their lives to ensure that no one dies alone. The experience is humbling, deeply moving, and a poignant reminder of the circle of life. Each time I watch someone take their last breath, I am struck by the mystery of life and death – breath and finally no breath. Ever again.

I don’t know who I would be today if I had not cared for my sister when she was dying. If I had not sat with her as she took her last breath, I doubt I would now have the wisdom and equanimity to sit with dying people today. If I had not cared for my sister, I might still be pretending that I could somehow avoid dying – both myself and the people I love. I might still be racing from meeting to meeting, barely stopping to notice what was happening right in front of me. I might still be steering a wide berth around people who had lost someone close to them, lest I somehow “catch” death myself.

These days, I spend time following the debates in the House of Commons on what is now termed Medical Aid in Dying. Whatever happens in the Senate in the coming days, Bill C-14 will soon be the law of the land. People will be able to request and receive medical aid in dying.

Yet, the fact is that people have been receiving medical aid in dying for centuries. Medications have helped to ease pain and suffering and to reduce the symptoms that are part of the dying process. In that past few decades, hospice palliative care has made enormous strides in easing such suffering. New drugs and treatments, the practice of titrating the dosage so that the patient can live pain-free and alert for as long as possible – all of these methods are form of medical aid in dying. The presence of compassionate and caring staff and volunteers might be termed non-medical aid in dying. We accompany and help people in this final passage in life.

When I sit with a patient who is dying, when I see a family surrounding their beloved parent, I feel that I am part of the mystery and the miracle of life. Like the births I have witnessed and experienced, these deaths too are an integral part of life.

I hope that, whatever form the final legislation takes, we do not lose sight of these fundamental truths.

 

 

 

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