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Posts Tagged ‘hospice palliative care’

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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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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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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“What’s in a name? That which we call a rose by any other name would smell as sweet.”  (William Shakespeare)

“A rose is a rose is a rose is a rose.” (Gertrude Stein)

I’ve spent the better part of the morning watching coverage of the Supreme Court of Canada hearing on the Federal Government’s application for a 6-month extension of the Court’s February 6th deadline (an extension to the Court’s one year exemption on its decision in Carter v Attorney General of Canada, February 6, 2015). Should the Court decide not to grant the extension, the provisions of the Criminal Code that criminalize assisted suicide will be struck down in less than four weeks from today.

I have written about this issue on a number of occasions on this blog. (If you wish to read those articles, type the words “assisted suicide” in the search box at the top of this post.) Sitting at my desk watching the coverage today, as I did on October 15, 2014 during the original hearing, I was struck once again by the power of language – the use of words to support or undermine a particular argument. (I was struck by this last week, as well, when I attended the “consultation” by the Ontario Government’s committee on assisted dying, as opponents chose to use the word killing while advocates spoke of the unremitting, unrelenting and horrific suffering that failure to provide physician-assisted dying would inevitably cause.

As readers of this blog will know, I find the debate on this issue deeply troubling. As a passionate advocate of hospice palliative care, I am deeply concerned that such care (and pain and symptom management) is available to only 35% of Canadians (a generous estimate at best). I have also witnessed unremitting suffering as my sister died from cancer that had spread to her bones and throughout her body before her death at the age of 51.

I won’t even begin to suggest what I think the Supreme Court of Canada should do in this case. What I will say is that watching Joseph Arvay (the brilliant lawyer who has represented the BC Civil Liberties Association (in support of physician assisted dying) makes me wince as I listen to his claims that people currently suffering from ALS, MS, and other debilitating diseases will be condemned to suffer in agony should the extension be granted. So too do attempts to underplay the monumental (in my view) sea change that a policy of physician assisted dying represents.

What can I do in the face of this “war of words”? How should I respond as we face the inevitability of the decriminalization of assisted dying, whether in 6 months or four weeks (or right now, inside of the province of Quebec). As someone who was raised by a brilliant lawyer, jurist, and lover of language, I will choose my words carefully. I will inform myself on the issues as best I can (and for a former academic, that is a very time consuming job!) I will bring compassion to everyone who is affected by and speaks out about the issue. And I will continue to write, speak, and advocate for universal access to high quality affordable hospice palliative care for all Canadians from sea to sea to sea. And I will continue to serve the patients and families I meet each and every week at the residential hospice where I volunteer.

 

canada-supreme-court

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This week the Economist released its second Quality of Death Index. The report compares the conditions and circumstances of dying in 80 countries, and ranks those countries on a series of measures. As with the first report, this one makes for interesting reading and provides fuel for our advocacy of hospice palliative care.

This year Canada ranked 11th – a drop of two places from the previous report, issued in 2010 when Canada was tied with the US for 9th place. Though the two reports are not directly comparable (since the current report includes 80 countries and focusses more specifically on palliative care as opposed to end of life care), we can, I think, feel some concern that our ranking has declined in the interceding years.

To me, it’s clear that we need a national strategy for end of life care, as well as for seniors, the fastest growing population in our country. It’s a pity that these issues have been given so little attention in the current Canadian election!

The report is available to download on the Economist website – it’s well worth reading for all who are interested in hospice palliative care.

http://www.economistinsights.com/healthcare/analysis/quality-death-index-2015/multimedia

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A few weeks ago, I attended a panel discussion and community meeting organized by MPs Charlie Angus and Paul Dewar. At the time, I didn’t realize that the duo had been organizing such town halls in locations across Canada and that upwards of 100 people attended each one. In the depths of winter and on beautiful sunny spring days, people came out to talk about death, dying and palliative care.

After the meeting, I emailed Charlie Angus to see if I could meet with him to talk about how to further community engagement on palliative care. (Yes, it was one of those moments, assisted by the internet, that I overcame my introvert shyness!) To my surprise and pleasure, his executive assistant responded quickly, setting up a meeting for this Tuesday.

I arrived, carrying a copy of my new book and my report on Death, Dying and Canadian Families, and we settled into the chairs and couch in his office. I made a remark about his omnipresent guitar (he’s famous for pulling it out and improvising a song almost at the drop of a hat!) and we bonded over guitars to break the ice. But we soon got down to business.

I asked him how he saw us moving forward with the campaign to secure hospice palliative care for all Canadians, and how I might help with those efforts. He is clearly passionate about these issues and has already received virtually unanimous support for his motion to develop a national palliative care strategy. And his party, the NDP, has made palliative care one of the planks of their election strategy. They will be trying to make palliative care an election issue in the federal campaign this summer and fall.

As he noted, palliative care is a difficult issue “to get traction on.” Assisted suicide gets lots more air time in the media. And it’s much simpler to get people mobilized for and against. But hospice palliative care will affect every Canadian in one way or another during their lifetimes, and it’s an issue, we agreed, can’t be allowed to be neglected.

It was exciting to see a politician so genuinely committed to an issue. And so willing to talk about ways in which I, as a private citizen (and writer and activist and PhD) can help to forward hospice palliative care. While we can’t (and don’t want to) speak on behalf of our specific organizations, we can speak as citizens, as beneficiaries of hospice palliative services, and, in my case at least, as a member of the population of aging Baby Boomers.

When I wrote back to his E.A. after the meeting to thank them for taking the time with me, he immediately wrote back to say “thank you for making the time to meet with us.” And, he added, let us know how we can support your efforts.

All of us who are committed to hospice palliative care can speak out, contact our politicians, show up at local debates to raise the issue, write letters to the editor, hold community meetings and discussions – the list is endless. In this way we can ensure that all Canadians have access to the high quality hospice palliative care we need.

Let me know what you think!

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