Meaningful end-of-life care: Improving palliative care services for the Tsleil-Waututh Nation
News & Updates | September 1, 2023 | Dying With Dignity Canada
In Dying With Dignity Canada’s strategic plan, our first goal aims to nurture a more inclusive and diverse end-of-life rights movement. This includes seeking out, listening to, and integrating more perspectives in the work that we do. Through a blog series focused on meaningful end-of-life care, we would like to explain what meaningful care is, why it is important and share examples of what it looks like in a health care setting.
The Tsleil-Waututh Nation – in collaboration with Vancouver Coastal Health (VCH) – received an award for their work in providing meaningful end-of-life and palliative care to its community members. Tell us about this program and how it came to be.
Over the last 3 years the Tsleil-Waututh Nation ćećəwət leləm “Helping House” team worked closely with the VCH’s North Shore Palliative Care and Everyday Counts team to improve palliative care services for Tsleil-Waututh Nation members specifically and by extension for other Indigenous people.
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 Indigenous Palliative Care Project, 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.
Combining a Western medical approach with the strength of Indigenous knowledge and ways of knowing is 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 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.”
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.
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 hospitals and hospice.
Andrea Aleck, Tsleil-Waututh Nation’s director of Health and Wellness shares, “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.”
We are seeing more efforts to provide meaningful care in some health care settings, what does this look like in your Indigenous Palliative Care projects?
The best intentions will not be successful if there is no trust. The biggest learning for the VCH team members was that trust comes first and is not gained over night. Gaining trust allows us to build relationships. Gaining trust requires us to be present, to listen, to be humble and to be open to learning. The Tsleil-Waututh Nation ćećəwət leləm “Helping House” team met with the VCH team monthly over the last three years. We introduced the VCH palliative team during various community events, for example COVID-19 vaccination clinics, Wellness Fairs and a Palliative Care Meet and Greet specifically organized for Tsleil-Waututh Nation Elders. It is important to note that these meetings happened in the Tsleil-Waututh Nation community and proved important for building relationships and trust.
There are many ways meaningful care can be integrated into health care settings:
- Build knowledge through education about the First Peoples of this land pre-contact and post European contact
- Learning about the Nation’s ways of knowing & being which is through engagement, building relationship and building trust on an individual and community level
- Improve understanding on the ongoing impacts on Indigenous health & wellness that stems from colonialism, oppression, racism, discrimination, and the Indian act that is still in existence today
- Ongoing Self-Reflective practice – i.e., knowing that I am from another country that has come to settle on these ancestral, traditional and unceded lands of the First Peoples
- Creating a comfortable, unhurried, unrushed, safe space for safe health care experiences
- Grassroots levelled engagement: led & driven by community needs as articulated by community voice (e.g., TWN Elders Health Advisory)
- Ability of primary care to readily access on-call palliative care physician and Nurse Practitioner services
- Including local Indigenous representation at palliative care rounds in the acute care hospital
- Facilitating knowledge-sharing topics: advanced care planning & serious illness conversation; cultural safety training; honoring Indigenous culture as medicine and healing (incorporating two-eyed seeing model)
Can you share some examples of what perspective(s) Indigenous culture brings to the end-of-life experience? Understanding that there are many Indigenous nation communities, maybe you could share the Tsleil-Waututh perspective.
The spirit of Indigenous communities encapsulates the deep and resiliency of survival. Throughout history, our people have lived in harmony with our culture and spiritual practices, weaving them into the fabric of everyday life. Ceremonies have marked each milestone from birth to death, honoring these significant moments with reverence and respect.
The profound impact of colonization forced our community to safeguard these practices in secrecy, a testament to our strength and adaptability in the face of adversity. The wisdom of our knowledge keepers played a pivotal role, passing down these teachings across generations, ensuring the preservation of your ways of knowing and being.
In times of loss, our community comes together as a powerful force of support, embracing families with open arms during moments of grief and sorrow. The strength of our songs is undeniable, the heartbeat of the drum provides solace, respect, and honor to those who have passed and lending strength to the bereaved families.
The practices surrounding the transition to the next world showcase the deep-rooted connection our community maintains with both the physical and spiritual realms. The unity of our women in preparing meals and extending compassion during the grieving process reflects the power of communal care and solidarity.
Storytelling, a cornerstone of our heritage, serves as a vessel for memories and healing. By sharing stories and laughter, we not only celebrate the beauty of departed loved ones but also embark on a journey of collective healing.
The importance of coming together, sharing stories, laughter, food, drumming, singing, and gathering is the cornerstones of support and healing within our community. It’s a testament to the profound resilience, strength, and love that defines our culture and guides our way of life.
Are there any general approaches that all health care providers could implement to address offering meaningful care to Indigenous people? Questions to ask, assumptions not to make…?
Again, this comes down to developing trust and relationships. Projecting an openness to learn and being humble, listening respectfully and empathetically. Realizing that the palliative journey is a very personal journey and what is right for one family is not for the next. So being open and providing a safe environment for clients to share what is important for them on their last journey.
Being trauma informed – know the history, its impact, including ongoing challenge of systemic racism in our health care institutions
Being self-aware – know & question your biases.
Can you share any resources about culturally appropriate care for Indigenous people for those who may want to learn more.
Acknowledging and knowing about the painful colonial history is important. As such all Canadians, and especially health care providers need to be familiar with the following documents:
- In Plain Sight
- Truth & Reconciliation: Calls to Action
- United Nations Declaration on the Rights of Indigenous People
- San’yas cultural safety course
The following videos from the Tsleil-Waututh Nation may also be of interest:
- Tsleil-Waututh Nation, Comprehensive Community plan
- Tsleil-Waututh Nation, People of the Inlet
- Prayer Song
- Going home
What is next for the Indigenous Palliative Care project? Are you aware of other similar projects in health care?
This is an ongoing project, a journey that requires ongoing commitment (staffing, time, funding) and the work will continue. The learnings of the Palliative Care Project apply to other areas in health care, suicide prevention and the response to the toxic drug crisis come to mind.