Tuesday, January 11, 2011

Patient Advocacy, death and dying

Another ridiculous article about adult children caring for dying parents.
There’s no manual for home death

by ANDREA LAWRENCE From Monday's Globe and Mail

This writer is just plain wrong. There are many manuals. The books abound. From the Cancer to the Alzheimer Societies. 
Health care professionals are continually in denial. They refuse to speak of the subject. Like the physician in this article, they do not create treatment plans, discuss the issues with family members, and while end-of-life timelines are difficult to predict, they must be dealt with.

It takes people, like myself and Hospice Primary Care advocates and volunteers, who educate families.
Physicians keep their heads in the sand. I told the story of one who marched into the room where I was sitting quietly with a client and declared, "She just won't die!"

Much literature abounds, many, like me, have written memoirs and researched self-helped books meant to educate. You'd think, after all this time, that we would have learned help each other to care for dying loved ones. Many of us have, but too late.

I continue to advocate for a midwife/doula, better and more trained Personal Support workers (PSWs), who will work with families. For it is not just the parent who dies, but it affects the entire family. 
We need PSWs who are regulated, and uniformly trained, and all of our physicians to have geriatric and palliative training, as many of our nurses possess. 
All of them should have such training, as should all those who work in long-term care.

Training, awareness and education. Government sponsored hospices, patient navigators, this is what we need.

Many lobbying for change in this area of Canadian healthcare...

Canadian Association of Patient Centered Health
Led by a Canadian dentist, a 'grassroots' organization.
Patient Destiny A doctor of U of T., patient empowerment and electronic health records.
Finding healthcare.ca  - Janet Walker
Canadian Patient Coalition - Canadian patient summit of March, 2010

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