The Project

Improving End-of-Life Care in First Nations Communities

The need for palliative care services for First Nations people is increasing due to an aging population and the high burden of chronic and terminal disease amongst this population. Many First Nations people want the opportunity to die in the communities where they have lived all of their lives; however people in First Nations communities have limited access to culturally relevant and formalized palliative care programs. Providing equitable access to health services for all Canadians is a compelling social obligation that includes developing accessible palliative care programs for First Nations people.

The overall goal of this 5-year (2010-2015) Aboriginal Health Intervention grant was to improve the end-of-life care in four First Nations communities through developing palliative care programs and creating a culturally appropriate theory of change to guide palliative care program and policy development nationally. The research was funded by the Canadian Institutes of Health Research and based at the Centre for Education and Research on Aging & Health (CERAH) at Lakehead University, and was conducted with four partnering First Nations communities:

  • Fort William First Nation, Ontario
  • Naotkamegwanning First Nation, Ontario
  • Peguis First Nation, Manitoba
  • Six Nations of the Grand River Territory, Ontario

Dilico Anishinabek Family Care and the Kenora Chiefs Advisory were collaborators on the project.

The research project followed the principles of OCAP (Ownership, Control, Access and Possession) which are sanctioned by the First Nations Information Governance Committee and the First Nations Regional Longitudinal Health Survey, to ensure self-determination in all research concerning First Nations. The methodology was based on community capacity development and took a participatory action research (PAR) approach, which has two unique features.

  • Participatory means that those people and organizations that will benefit from the research also fully participate in it.
  • Action means that the goal of the research is to make social change.

Through this research, First Nations health care providers were empowered and supported to be catalysts for community change in developing local palliative care programs. Using a four phase conceptual model to guide the change process, providers in the site communities chose a series of clinical, educational or administrative interventions to build local capacity. Each intervention was implemented and evaluated for its contribution to developing palliative care.

The overall project was very successful and achieved the following outcomes:

  1. Created locally designed and controlled palliative care programs in four First Nations Communities that demonstrate the effectiveness of the EOLFN community capacity development process, the feasibility of providing local palliative care at home in First Nations communities, and the benefits of the giving First Nations’ people the choice to receive palliative care at home.
  2. Developed the Developing Palliative Care Programs in First Nations Communities Workbook for use by First Nations communities nationally. The workbook will guide interested communities through the process of developing local palliative care programs. Based on our research, the workbook is practical, culturally appropriate and includes more than 40 tools and resources to assist communities. This workbook is on our website and available at no cost.
  3. Created a national Improving End-of-Life Care in First Nations Communities Alliance. The Alliance consisted of over 100 individual and organizational stakeholders that include First Nations communities and Aboriginal organizations, federal and provincial health care decision makers and policy makers, and palliative care organizations.
  4. Developed two policy documents to guide health care decision makers and the
    federal/provincial/territorial governments in supporting First Nations communities to develop local culturally appropriate palliative care programs:

    • A Framework to Guide Policy and Program Development for Palliative Care in
      First Nations Communities
    • Recommendations to Improve Quality and Access to End-of-Life Care in First Nations Communities: Policy Implications from the Improving End-of-Life Care in First Nations Communities Research Project.

Key themes in the policy documents are enhancing resources to provide home care in First Nations communities, creating cross jurisdictional partnerships to improve palliative care services, improving collaboration between Home and Community Care and provincial health care organizations and local capacity development for palliative care in First Nations communities. One of the documents, the Recommendations, is specifically directed at the federal government who has the jurisdictional responsibility to provide health services on First Nations communities.

The principal investigator is Dr. Mary Lou Kelley from Lakehead University. The co-investigators include: Dr. Kevin Brazil; Mrs. Holly Prince; Ms. Gaye Hanson; Ms. Mae Katt; Ms. Valerie O’Brien and Dr. Chris Mushquash.