The Indigenous Last Stages of Life Project

Image courtesy of Don McIntyre

The Law Commission of Ontario (LCO) report Last Stages of Life for First Nation, Métis and Inuit Peoples: Preliminary Recommendations for Law Reform shares findings from a series of engagements between the LCO and First Nations, Métis, and Inuit communities across Ontario, along with the many who provide health services in those communities.

The LCO committed to Indigenous engagement as a distinct but complimentary part of our Last Stages of Life Project. The project considers how the law shapes the rights, choices, and quality of life for persons who are dying and those who support them. The LCO sought engagements on the last stages of life out of the acknowledgement that health care for Indigenous peoples in Canada is in dire need of reform along with the laws that shape it.

The project is also guided by recommendations of the Truth and Reconciliation Commission of Canada. In 2015 the TRC confirmed the need to recognize, elevate and integrate self-determined Indigenous legal orders and traditions within Canada’s justice system.

The LCO sought respectful relations based on the revitalization of Indigenous traditions and laws. Our approach was to listen and learn how different Indigenous communities live “the last stages of life” through their experiences, values, culture, practices, and traditional laws.

This mosaic of experiences is recounted in the words spoken throughout this paper by 118 participants from Indigenous groups and communities across Ontario. Their words help establish a set of terms and approaches different and distinct from colonial law and policy. It creates space to critique, contest and de-colonize existing Canadian and Ontario law, and to think about new and different arrangements.

The LCO acknowledges that it is only from this place of Indigenous self-definition, and through the revitalization of Indigenous laws and tradition, that the reform and creation of new law is possible.

Crucially, the LCO further acknowledges that it is not our role to speak for or on behalf of Indigenous communities. This report does not purport to do so. We are instead guided by the Terms of Reference set by an independent Indigenous Engagement Advisory Group. In their view, the LCO’s expertise is best suited to:

  • Hear how diverse and distinct Indigenous histories, cultures, traditions, practices, and laws intersect with and experience the colonial health care system in the “last stages of life”;
  • Trace these experiences back to specific provisions in colonial Canadian and Ontario health law (and other relevant intersecting laws) to understand how these laws impact the health and wellness of Indigenous communities, particularly regarding care in the last stages of life;
  • Highlight how these intersections suggest plural legal and intercultural spaces for future law reform conversations to take place between Indigenous communities, Ontario, and the Federal government in a way that nurtures self-determination and legal co-creation consistent with reconciliation; and
  • Compile these findings in this report which may be read alongside – but distinct from – the LCO’s Last Stages of Life: Final Report.

Accordingly, the report identifies a series of “promising directions for future law reform conversations,” addressing:

  • The need to reconceive health care consent, capacity, and substitute decision-making;
  • The impact of jurisdiction on Jordan’s Principle and equitable access to health care;
  • Facilitating traditional practices governing death in the home and natural burials;
  • Measuring health care performance with Indigenous practices and values;
  • Better supporting Indigenous health professionals, family members, and caregivers in community; and,
  • Access to Indigenous hospices in community.

The report includes 36 recommendations the give life to these “promising directions for future law reform conversations.”

Read the Final Report

The Final Report can be downloaded here.

Engagement

Outreach, engagement, and consultation is fundamental to the work of the LCO. The LCO undertakes to ensure representative participation from the many diverse voices and various groups across Ontario.

Consistent with this commitment, the LCO sought advice and received a recommendation that supported the establishment of a distinct process and materials to engage with Inuit, Métis, and First Nation members in Ontario.

Our first steps were taken in 2018. A roundtable discussion with Indigenous chiefs, elders, health care workers, legal advocates, and health policy staff set us on a wider and deeper path of engagement over the course of a year.

This would not have been possible without the guidance and dedication of the Indigenous Engagement Advisory Group, established in the Fall 2018. The LCO additionally engaged Cassandra Baars to act as Indigenous Engagement Lead and Legal Counsel.

The Indigenous Engagement Advisory Group helped establish a Terms of Reference and priorities for the engagement which were to:

  • To ensure First Nation, Métis and Inuit have an opportunity to inform the LCO of their experiences with the last stages of life including, Palliative Care, End-of-Life Care and Medical Assistance in Dying;
  • To ensure that First Nation, Métis and Inuit laws and protocols are acknowledged as distinct alongside western law and policy;
  • To ensure any findings and analysis of the Indigenous Engagement are situated in a legal context that includes the Constitution, treaties, the UN Declaration on the Rights of Indigenous Peoples, the 94 “calls to action” of the Truth and Reconciliation Commission, case law, and community legal traditions;
  • To include Indigenous academic research and the knowledge and experience of Indigenous-led health sector programs;
  • To ensure the engagement is geographically representative; and,
  • To ensure that any community engagement include follow-up.

Engagement efforts began in the Spring 2019. We thank the 118 people who spoke to us from over a dozen communities across Ontario. Each person was trusting enough to start a relationship and to discuss the very difficult issues in this report.

Acknowledgements

The LCO wishes to acknowledge the contributions of Cassandra Baars, Indigenous Engagement Lead, as fundamental to building this project from the ground up and in sustaining its commitment to engage openly and meaningfully with each community we met with.

We also acknowledge the members of the Indigenous Engagement Advisory Group who gave so generously of their time, expertise, and lived experiences:

  • Myeengun Henry, Former Chief, Indigenous Knowledge Keeper from Chippewas of the Thames First Nation
  • Alana Hill, Six Nations Health Care
  • Kathleen Lickers, Lawyer
  • Megan Logan, Chiefs of Ontario
  • Katie Gasparelli, Six Nations Health Care (Advisory Group Member 2018-2020)
  • Lori Davis Hill, Six Nations Health Care (Advisory Group Member 2020-2022)
  • Donna Loft, Chiefs of Ontario (Advisory Group member 2018-2020)

We further acknowledge the contributions of Don McIntyre for his images and storytelling. Don was kind enough to paint the image that appears on the cover of this report, illustrating his story of the Four Hills also included in the paper. Don also generously contributed several other art works used throughout this paper. More of Don’s wor