The Near North Palliative Care Network has been searching for a method to engage the community in a dialogue about death and the needs of the dying. Often there is a misconception that hospice palliative care is a focus on death. We want to turn that idea upside down. We want our communities to understand that quality of life and living a good life also includes a discussion about end of life.
We support the view that we have a finite life that we need make the most of. Hospice palliative care is not so much a method but a philosophy of care. We are a death-denying society. Death is somehow viewed as unnatural or giving up. Palliative care is about accepting that we have finite lives and living well every hour of every day. It is about relieving suffering and improving the quality of a person’s life and how they die given a life limiting illness. It is about promoting opportunities for meaningful and valuable experiences, personal and spiritual growth. It is an approach that improves quality of life of patients and their families.
Only 16% to 30 % of Canadians currently at the end of their life have access to or receive hospice palliative and end-of-life care services (Canadian Hospice Palliative Care Association, 2013). When asked, most people have indicated that they would prefer to die at home in the presence of their loved ones (Canadian Institute for Health Information CIHI, 2007). Yet almost 70% of Canadians die in a hospital setting. A 2002 study showed that 70% of family caregivers acknowledge that providing care to a loved one is stressful, and that they require time away from the responsibility of caring for a loved one (National Profile of Family Caregivers in Canada – 2002: Final Report). In 2007, 23% of Canadians said that they had cared for a family member or close friend with a serious health problem in the last 12 months, using personal savings to survive (41%), and missing one or more month of work (22%) (Fact Sheet: The Role of Family and Informal Caregivers). Ignoring end of life discussions is at our peril as families and communities.
Project Members:
- Holly Cunningham – Near North Mobile Media Lab
- Susan Srigley – Faculty of Arts & Science – Chair, Religions & Cultures, Associate Professor. Nipissing University
- Laura Peturson – Faculty of Arts & Science – Fine Arts, Associate Professor. Nipissing University
- Andrew Ackerman – Faculty of Arts & Science – Fine Arts, Associate Professor. Nipissing University
- Shannon Lucas – Documentary film producer – morethancommon.com
- Cindy L’Ami – 3rd year BScN Nursing Student, Nipissing University
- Jessica Delorme- 3rd year BScN Nursing Student, Nipissing University
- Heather Brunet- 3rd year BScN Nursing Student, Nipissing University
- Susan Robinson- Nurse Practitioner CCAC, and Clinical Instructor at Nipissing University
The Concept
“We live in a death denying and grief denying society. It is often difficult to have
a conversation about a topic of such significance as death. We believe that death is
not simply and individual’s medical process; it is a social, cultural, spiritual, and
community experience. Those things that allow us to live to our fullest potential are
the same things that allow us to have the best possible death. It is the need for
compassion, understanding, meaning, dignity, and a feeling of completion. How we die
also affects those around us that continue to live. We want to provide you with information,
resources, links to service providers in your region, and thought-provoking conversations
that will assist you in starting your own dialogue with the people that matter most to
you. What do you need at end of life? What do your loved ones need? We invite you
to come in and experience our website.”
The needsofthedying.ca campaign was developed in partnership with local artists and members from Nipissing University. The idea is based off of a community art project developed by Candy Chang called the “before I die” campaign that has since gone global in its reach (http://beforeidie.cc/).
this campaign has three goals in mind:
- Increase community awareness, understanding, and engagement regarding the needs of the dying and the concept of a “good death”
- Increase the communities’ awareness regarding the services provided by NNPCN
- Value and need of our services
- Desire to donate to our services
- Interest in volunteering
- Increase local and regional partnerships and alliances within the palliative communities (I.e. opportunities for other service providers to join in on the campaign)
Project Outline
An outline of the project has been communicated to the North East Local Health Integration Network (NE LHIN), our main decision making and payment agency for the province of Ontario. The NE LHIN has already contributed video interviews for the needsofthedying.ca website and expressed interest in adopting this project at a regional and provincial level once the local project has been established.
Year 1
- Choose a site
- Establish wall
- Develop and launch website
- Launch project with interview from CTV news and local media strategy
- Introduce campaign to Local end-of-life steering committee representing the palliative community in the Nipissing District
- Recruit new member agencies for the website
Year 2
- Expand site locations and walls across Nipissing region
- Increase local and regional agency membership
Year 3-5
- Work with NE LHIN on establishing regional task force
- Expand to other regions of the north