"Unfortunately, in end-of-life care, we do not have a vocal constituency: The dead are no longer here to speak, the dying often cannot speak, and the bereaved are often too overcome by their loss to speak." (Harvey Chochinov, 2000)

Who does speak for the dying and the bereaved? What does current policy say and who does it speak for?



As has been evidenced in previous posts, there is a lack of current policy, although there is no lack of desire to have it in place, right across the country. Currently, each province and territory have their own sets of "loosely crafted" policy and policy initiatives. It is our view that, as a country, we need a consistent, universal, accessable, affordable and compassionate approach to "end-of-life care" - one policy. It is also our view, that this is entirely possible. The senate sub-committee "Of Life and Death" (2000) agrees "the development of a pan-Canadian End-of-Life Care Network to further EOL care and program developments, including clear working practice guidelines and organizational components, such as mandatory accreditation, is needed as soon as possible in Canada to ensure a broad range of health care and social support services are available to all persons near the end of life and their significant family members or friends." (2004).



An organization called the Quality End of Life Care Coalition of Canada (QELCCC) representing some 31 different groups, all who focus on end-of-life care, states the same. They offer a host of statistics on their website and provide an invaluable cohesive approach. The information available allows us to determine just what a policy should include.

According to the senate sub-committee, there are four Key Components for an EOL Care Policy. We are in agreement. The Key Components are as follows:

1. Universality


2. Care Coordination - a paid position


3. A broad range of basic and advanced EOL services, and


4. An assurance of EOL services regardless of care setting.

To elaborate on these components we refer to their referencing in the paper "Integration of End of Life Care: A Health Canada Synthesis Research Project" (2004).

Universality refers to making available a full complement of EOL social support and healthcare services to all persons who are faced with end of life, including those dying and their families and or friends.

Care Coordination refers to the need to have these services made available and arranged through Care Co-ordinator who is specialized in EOL care, knowledge, skills etc. This should be a paid position in all cases.

A broad range of basic and advanced EOL services means exactly that - choice. Choice not just of what services a person desires, but where they desire to have the service provided (home, hospital, LTC, hospice), how the provision is carried out, whether it be basic or advanced. To key is to provide the care that is needed at the time it is needed - throughout the often lengthy process of dying. These services may include but certainly are not limited to, day support programs, respite care, financial aid to caregivers, availability of information 24/7, bereavement services for the bereaved, comfort care or extraordinary care measures to address deteriorating health conditions, sufficient home care provisions, equipment and medication, spiritual care and finally pain assessment and management in a timely, responsive manner. EOL pain management is unique to other times of pain management and this must be recognized and supported by the medical and pharmacological communities.

Care setting refers specifically to the fact that, as mentioned previously, 75% of Canadians say they would wish to die somewhere other than in an institution, and yet almost that many die in exactly that setting, institutionally. This disrespectful scenario needs to change to allow for choice.

Further posts will discuss DNR orders, Living Wills and Resource Allocation.