Pain Free by 2003

A national survey on the effectiveness of pain control for people with a terminal illness


In a bilingual survey Legacies commissioned in 2000 we found out that about 25,000 Canadians die each year with unbearable pain. This result was not based on a worst-case scenario. Rather the question we asked was “When your loved one’s pain was best managed, what was it on a scale of 1-10 with ten being the worst pain?” Based on that question, about 25,000 Canadians each year have pain between 7-10, when it was best managed!

Specifically the results by (Dialogue Canada), May 2000 (2,404 surveys returned) were:

•1/3 adult Canadians had family member or close friend die of a terminal or life-threatening illness within previous 2 years

•29% had pain that was unsuccessfully treated most, or all, of the time

•28% had pain that was unsuccessfully treated some of the time

•when pain was most effectively controlled, 44% of these patients had terrible pain (between 7-10 on 10-point scale with 10 = very great pain) or approximately 25,000 per year.

We concluded that:

•There is no strong advocacy voice for patients (although many agencies, services, organizations and associations represent professionals and volunteer care providers).

•Too few people receive any form of effective palliative care (physical, emotional, spiritual, information).

•Insufficient leadership within health care and insufficient political will to resolve these obvious problems quickly and effectively.

•Insufficient thoughtfulness on preventing a repeat of modern health care bureaucratization and expansion; and short-term view of integrating into ineffective system.

Pain and symptoms can always be helped so that people can live as fully as possible and participate in their family and community life.

Locally, you and your allies in the promotion of excellent hospice palliative care can:

1.require palliative/hospice care providers to demand of their colleagues in other branches of medicine, nursing, and social work to use the proven methods to control unbearable physical pain. We have legislated that care providers must report child and elder abuse done by their colleagues; we can do the same to prevent the torturous neglect of dying people.

2.recognize pain as the fifth vital sign that must be monitored and addressed regularly by physicians and nurses (the other four being temperature, pulse, respiration and blood pressure). It is not acceptable to ignore pain and discomforting symptoms when we have the skills to control them.

3.educate the general public to understand and accept the basic principles of effective pain and symptom control so that they do not expect or accept, inadequate control of unbearable pain.

4.require health care administrators, insurance companies, and health care bureaucrats to ensure and monitor effective pain and symptom control and that they publicly and forcefully deal with those who negligently do not practice it.

5.demand legislators to revise laws and regulations to strongly encourage and monitor effective pain and symptom control and forcefully deal with those who negligently do not practice it while safeguarding those who practice effective pain and symptom control from malicious prosecution.

If we do these things together, then when someone we know is dying, they will not suffer unbearable pain BUT RATHER be relatively pain-free and alert with the energy to live life to the fullest with their family and friends. We promote excellent hospice palliative care to improve the care of all community members but we also do it to ensure that our own families, and one day us, also have compassionate, personal care. This humane motive includes everyone we know and love as well as people we will never know. That is the hospice palliative care philosophy represented at its best and we control the outcomes when we work together.

Undertaken by Legacies Inc. May 2000 through the polling firm Dialogue Canada