The Indigenous Palliative Care Projects

The North Shore Palliative Care team in Vancouver Coastal Health’s (VCH) Coastal Community of Care (CoC) learned that to successfully improve palliative care services for the Indigenous communities they serve, they could offer the clinical expertise, but they required the guidance, knowledge and partnership from the Nations, the Nations’ health teams, and the Nations’ Indigenous Elders and Healers.

It’s a concept best described by Mi’kmaw Elder Albert Marshall as Two-Eyed Seeing: “learning to see from one eye with the strengths of Indigenous knowledge and ways of knowing, and from the other eye with the strengths of Western knowledge and ways of knowing, and to use both of these eyes together for the benefit of all.”

Two-Eyed Seeing is the foundation of the Indigenous Palliative Care Projects (IPCP), a partnership to improve palliative care services for and with Indigenous Peoples in the Vancouver Coastal CoC region. The bulk of these projects were undertaken in partnership between VCH’s North Shore Palliative Care team and Tsleil-Waututh Nation, a distinct Coast Salish First Nation community with a strong and growing population.

In the Tsleil-Waututh Nation community’s words, dying is referred to as “I’m Going Home to join the Ancestors,” which in their language reads nem̓ cən t̕ak̓ʷ ʔiʔ q̓əq̓aʔtəl̕ tə syəwenəɬ.

“Collaboration is key,” says Sierra Roberts, VCH’s project manager for the IPCP and North Shore Palliative Care Program. “It is only through authentic partnership that we as both Nation and health authority teams can journey together towards providing high-quality, culturally safe palliative care to community members at any level and point in the care continuum.”

Says Dr. Anis Lakha, program medical director of Every Day Counts and a palliative physician: “Palliative care improves the quality of life of individuals and families facing a serious, life-limiting illness. To provide this holistic care, we must listen to our patients’ stories and needs, whether it be spiritual, psychosocial or physical. This project has provided space and opportunity for our team to learn from our Indigenous partners in care, inspiring our commitment to improve palliative care for our Indigenous patients and communities.”

Indigenous Peoples experience many barriers when accessing palliative care including systemic barriers such as inadequate care coordination, poor transitions between health care settings, and limited access to palliative care services in First Nations communities. Fear and mistrust of the health care system, stemming from experiences of racism and discrimination within the system and throughout colonial history such as within residential schools and Indian hospitals, also is a social determinant of health inter-generationally, as they affect survivors and their relatives in being able to confidently and fully access health care services.

Through the IPCP, Tsleil-Waututh Nation and VCH identified gaps, barriers, and priorities to improving palliative care services. With this information in hand, they set a plan in motion to integrate VCH and Tsleil-Waututh Nation resources so that individuals are fully supported in their final journey.

The IPCP also collaborated with VCH’s Regional Palliative Approach to Care Education (RPACE) team to support earlier goals of care conversations for people at any point in a serious illness journey, enabling them to enjoy their best quality of life by identifying and honouring what matters most to the individual person. This included providing education to health care workers within First Nations communities and learning from them about what is important to their community when talking about changes in health over time.

Goals of care conversations provide an opportunity for the client and their family to reflect on and express what matters most to them for their care, including cultural protocols and family traditions. First Nations’ communities and families often have their own unique cultures, beliefs, and traditions around the last journey, meaning not all Western approaches to palliative care are appropriate or relevant.

Having these conversations early enables patients and care providers to plan ahead together so that wishes can be followed and respected, leading to higher quality palliative care. These conversations also highlight the importance of choice and the right to self-determination, empowering individuals to lead their care in a way that reflects their values and priorities and providing palliative care professionals the knowledge to support these wishes.

Tsleil-Waututh Nation and VCH collaborated to develop videos of traditional healing songs, with Elders sharing traditional knowledge about the final journey to “Go Home,” and pamphlets that represent palliative care from the Nation’s Indigenous ways of knowing and being. These projects expand the level of culturally appropriate palliative resources that can be offered to patients in different settings, including hospital and hospice. The IPCP facilitates ongoing education and knowledge sharing between VCH and different Nation health teams on topics including serious illness conversations, cultural safety, traditional protocols, and palliative care.

The IPCP is an ongoing journey, and the success of these projects bear testimony to the positive impact they have in the lives of Indigenous peoples and their communities. The greatest indicator of success is the commitment from Nations to continue this work together.

Sierra shares, “As we look ahead, our project team recognizes that the ongoing integrity and authenticity of these partnerships are fundamental to the continued meaningful impacts of these projects on palliative care in our region.”

Andrea Aleck, Tsleil-Waututh Nation’s director of Health and Wellness shared, “We hear the voices of our ancestors and Elders, and are guided by the knowledge keepers to reclaim what is rightfully ours as Tsleil-Wautt people. It is with this spiritual guidance and ancestral presence that we strive to strengthen our partnership, whilst ensuring that our palliative care services are culturally and spiritually informed by our Indigenous ways of knowing and being.”

A visual shared by Tsleil-Waututh Nation that strongly resonates as our vision is “to be in one canoe, we paddle as one.”

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The goals of the Indigenous Palliative Care Projects (IPCP) are to:

• Identify gaps, barriers, and priorities in palliative care services for the First Nations’ communities served by Vancouver Coastal Health (VCH)
• Improve palliative care access and resources in First Nations’ communities through the integration and support of VCH palliative care services in conjunction with Nation resources
• Work collaboratively with First Nations’ communities and health care professionals to provide holistic, high-quality, culturally safer palliative care to community members
• Support early identification of those clients in Indigenous communities who may benefit from a palliative approach to care, and offer the opportunity for goals of care conversations earlier in their journey
• Liaise with community services in a more structured manner to improve continuity of care for Indigenous clients that meet the individual’s and family’s wishes.

To address identified barriers, the IPCP worked to:

• Develop policies and procedures to promote safe discharges of palliative care patients from hospital
• Define pathways for Tsleil-Waututh Nation members transitioning to hospital for palliative care, while being medically, culturally, and spiritually supported
• Develop virtual music therapy resources with an Elder from a local Nation
• Support Talking Circles and engagement sessions with Elders to mutually learn about different perspectives and knowledge associated with palliative care
• Provide funding for VCH palliative staff to undertake university-level Indigenous Studies and cultural safety courses
• Ensure inclusion of local Nations in Lions Gate Hospital palliative care rounds and the access to on-call palliative care physicians.