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Posts Tagged ‘palliative care’

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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As the June 6th deadline for legislation on assisted dying rapidly approaches, the news is filled with stories pro and con on the best way to approach the issue of end of life care. Often missing from these debates is any real discussion about hospice palliative care – what it is (and what it is not!), what it offers to patients and families, and what end of life care might look like if palliative care were available to every Canadian.

The following article from the Toronto Star last week by a prominent palliative care physician does a great job at tackling these questions.

https://www.thestar.com/life/health_wellness/2016/05/09/palliative-care-is-not-about-dying-but-quality-of-living.html

 

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Somehow the month of April seems to be have raced by. For me, it was filled with speaking engagements (Colonel By Residence in Ottawa; Hot Talks on Health in Toronto) and planning for upcoming talks at the Good Companions Centre this week and in Lindsay and Fenelon Falls next week. It’s been exciting and energizing and a little exhausting (I am an introvert, after all!) and I’ve missing having the time and space to write and blog since my return from Virginia. I’ve made some great connections and met some amazing caregivers and volunteers and heard about the wonderful work being done by Carers UK. And now, here it is, May 2nd, and the start of Hospice Palliative Care week.

Yesterday was the Annual Hike for Hospice – I’ve attended all but one since I started volunteering at hospice in 2001. It’s always a great time to meet fellow volunteers, family members we’ve helped at hospice, and supporters of hospice palliative care. Hopefully – despite the dark skies and rain – we were able to raise much needed funds to continue our work at Hospice Care Ottawa.

I love talking about the work we do at the hospice (can you tell?) and I seem to find a way to insert hospice care into every talk I give, even if it’s not explicitly about hospice care! In these days when so much media attention is focused on physician assisted dying, I feel it’s vitally important to dispel some of the myths about palliative care and to tell people what hospice palliative care is all about.

Most people have never stepped inside a hospice. No doubt they have many fears and misconceptions about hospice care.

Some people think that hospice care hastens death.In fact, hospice care enables people to live their final days or weeks without pain (in most cases) and with dignity. Research suggests that hospice care can enable people to live longer once their pain and symptoms are successfully managed.

Many imagine that a hospice is a dreary place devoid of laughter or celebration. I can’t tell you how many times people have asked the question: “Don’t you find it depressing volunteering in hospice?” I tell them that yes, there is sadness at the end of life, but there is also joy and celebration. I have seen high school graduations, wedding and birthday and anniversary celebrations – even a visit from a brand new great grandchild – in my years at hospice.

Hospice palliative care enables people to live fully until the end of their lives. For those of us who are privileged to work in hospice care, we find inspiration and meaning and a reminder of the things that really matter in life – human connection, love, caring, dignity.

I am honoured to be a hospice volunteer. I know that many readers of this blog share that honour with me. Let’s take this week to tell others about the gifts of hospice care. Share this blog with them. Share your story with them. Encourage them to get involved, whether it’s helping to raise money, or volunteering as a driver for day hospice, or telling their elected officials of the need to provide sustainable funding for end of live care.

Let’s spread the word about hospice palliative care – this week – and throughout the year!

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I first wrote this post at the Virginia Center for the Creative Arts. It’s a year later now, and I am back in Virginia, writing about caregiving, end of life issues, and – yes – dignity.

Much has changed in the past year. We elected a new government – one that is committed to working with the provinces, to reforming health care, to providing more palliative care and support for caregivers in the home.

At the provincial level (I live in Ontario), we’ve seen a commitment to build up to 20 new residential hospices, to provide additional funds for existing hospices, and to increase support for caregivers. These are important initiatives and I look forward to seeing them implemented.

At the same time, however, there has been very little discussion about what hospice palliative care is – what it looks like, what it means for families and for patients who are reaching the end of their lives. There has been little discussion about what we want and need at the end of our own lives.

I hope that readers of this blog will take up the call to talk with your friends and family, your neighbours and workmates, about the kind of care we need and deserve. I hope you will talk about dignity and what it means to provide loving, respectful, dignified care for the people you love. These issues go to the very heart of what it means to be human. Please join me in this vital conversation.

Hospice Volunteering

I’ve been thinking (and writing) a lot about dignity in the past couple of weeks – what it means and how the notion of dignity has been largely appropriated by the “right to die” movement. Organizations with names like “Dying with Dignity” and “Compassion and Choices” seem to suggest that the only dignified way to die is with the assistance of a physician (whether through lethal injection or the provision of a lethal dose of medication).

Yet, dignity and compassion have been core values of the hospice movement since Cicely Saunders opened the first modern hospice in 1967 and remain central to our work in hospice palliative care today. Compassion lies at the heart of how we deal with patients and their families. And the preservation of a patient’s dignity, integrity, and respect are central to how we care for each person who enters the hospice program, whether in their…

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