Dying well -- it starts with a conversation

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Over the years, doctors and nurses have told me about the good deaths and the bad deaths they have seen.  The bad deaths haunt them. Here's one story I will never forget, told to me by an ICU nurse:

An elderly male patient, with metastatic cancer and extreme weight loss from his advanced disease, was transferred into the ICU. Soon after arriving, he suffered a heart attack. There was no DNR (Do Not Resuscitate) on the chart and no one knew his wishes, so the crash cart was called. "I put the defibrillators on his chest, but he was so emaciated from cancer — all bones — that I couldn't get a good contact. The paddles weren't flush against his body so they weren't grounded.  We zap him anyway and we can smell burning flesh . We work on him for three or four minutes zapping away, trying to get him back, but it was no use. When we took the paddles away there were these massive burns on his chest. I felt sick to my stomach. Why the hell did we do that? He was dying, why couldn't we just let him die?"

Alas, in the absence of clear directions from patients or their loved ones, the medical default mode is to apply the treatment, even if there's little chance of it succeeding. "Sometimes what we do in medicine to the dying patient seems an awful lot like torture ," observes Dr. Timothy Quill, a prominent US palliative care physician and Death With Dignity advocate.

It is no wonder that studies show high rates of moral distress among ICU doctors and nurses, especially over futile end of life treatments. It is also no surprise  that studies also show,  the majority of doctors when surveyed say they would choose a "no code" or DNR status, if faced with their own terminal illness. They have seen death up close, they know the choices available, and they would opt for quality of life over quantity of life.

When surveyed most people, too, say they would want a peaceful death, at home, surrounded by loved ones. But these days fewer than 30 per cent of dying individuals actually get that. More than 70 per cent die in hospital, often alone or hooked up to machines.

How do we change that? It starts with talking about the inevitability of death and what we personally want for it with our loved ones.

 Fortunately, open and honest discussions about death and dying are everywhere right now. Mortality is the meme of the moment.  Oliver Sacks,  Atul Gawande , Roger Angell,  and many more exceptional writers are tackling the topic this past year. Elizabeth Renzetti in the  Globe and Mail  today had a thoughtful  column on death and dying.

In Canada, part of this flourishing of discussion has come because of the Supreme Court decision striking down the law against physician assisted suicide (PAS). As I learned in the Netherlands, one of the greatest benefits to legalizing PAS is the ability to speak openly about our fears around death. Just talking with health care staff and family openly about the end of life removes a great deal of fear and anxiety about the dying process. 

But unbeknownst to most Canadians, for years now there has been a legal way to ensure a more peaceful death. That is Advance Care Planning.

Advance care planning is a process that allows individuals to have a say in the health care when they are too sick to speak for themselves.   It is a way to reflect on and discuss values, beliefs and priorities so that if the situation arises, loved ones can be well prepared to make health care decisions for you, that you would have made yourself. If the man inthe opening story had done ACP, he would not have been subjected to the brutal attempt at resuscitation.

April 16th is National Advance Care Planning Day across Canada. Here in BC, the City of New Westminster will be proclaiming April 11th, 2015 as Advance Care Planning Day in New Westminster. For the last three months I have been working with a group of doctors and health professionals to plan a special Advance Care Planning Fair in New Westminster (at Century House from 10 am to 2 pm on April 11th, 2015.)

The fair is being organized by the Fraser Northwest Division of Family Practice  with funding from  Shared Care Committee (the joint committee of  Doctors of BC and government).  The April  11 event will have speakers, activity tables, information and prizes. Doctors will be there to talk to individuals about some of the medical technologies, what they can do, and what they can't do.

For those who won't make it to New West next weekend, more information on ACP in general can be found at advancecareplanning.ca. Doctors of BC also has a 2014 policy paper out about the need for more doctors to engage with patients on ACP.

As I write this blog, I have been thinking of my wonderful Uncle Dave, who died last week after many months of living with the increasing respiratory failure of pulmonary fibrosis. He died, age 75, peacefully at home, surrounded by loved ones last Sunday. While death will never be easy for those left to grieve,  given the story of the ICU death the nurse told me and that of my Uncle Dave, when the time comes, I know which death I'd want for me.

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