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.
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.