“For most people in the developed world, conversations about such topics (as death) never take place. Young people remark in passing that they would rather be dead than go into a nursing home; that they do not want to die in hospital; that they do not want a drawn-out, agonising end. The closer that end is, the less it is talked about. The result is that hard choices are made without an understanding of their consequences. More and more people spend their last hours exactly as they wished not to: hooked up to machines under fluorescent lights, surrounded by strangers.” The Economist, October 4, 2014
The End of Life Study (Stats Can, 2012)* reported 13% of Canadians (3.7 million) aged 15 and older reported providing end-of-life or palliative care to a family member or friend at some point in their lives. These caregivers helped the terminally ill with such tasks as personal or medical care, preparing meals, managing finances or providing transportation to and from medical appointments. One in six caregivers who would have preferred providing palliative care in their own home said they lacked home care resources, financial assistance, paid time off from work and home modifications.
Digging deeper, a 2013 Harris/Decima** poll revealed that:
-About six in ten Canadians believe that it’s extremely important to have a talk to someone about their end-of-life care preferences – but only 45% have done so.
– Canadians who do have an advance care plan seem to be more engaged in the health care system – 90% of them have a family physician or regular place of care.
– Canadians overwhelmingly want their health care providers to give them information about advance care planning.
I have blogged previously on the importance of having the talk and making a plan. In my May 5, 2014 blog “Conversations Matter- Advanced Care Planning- Alberta Style” discusses the ‘green sleeve’ initiative underway in Alberta.
I believe that it is critical to reflect on our values and wishes, and to let someone you trust know your future health and personal care preferences so that they can speak for you, if you can’t speak for yourself.
The Canadian Hospice Palliative Care Association (CHPCA) agrees. As blog readers you might recall that CHPCA proclaimed April 16th, 2014 as National Advance Care Planning Day. It was a day for consider wishes and desires to be made at the end of life. It was to remind us to begin a conversation with a loved one about wishes for their or your own end of life care. Any day is a good day for the conversation. Lesson Learned: I can only echo this organization’s message. “Speak Up: Start the conversation about end-of-life care”.
* End-of-life care, 2012 released October 3, 2014 based on data from the 2012 General Social Survey on Caregiving and Care Receiving.
**“What Canadians Say: The Way Forward Survey Results”, is a quantitative online research survey of 2,976 Canadian adults. The poll was completed for the Canadian Hospice Palliative Care Association using the Harris/Decima’s proprietary online panel and is precluded from reporting a margin of error. The survey data was weighted using the 2011 Census to reflect the general population.
-Audrey Miller and Dr. Renee Ruiter Kohn