September 30th is the National Day for Truth and Reconciliation in Canada, which honours residential school survivors and those who passed away, their families, and communities. Further, this day calls on all Canadians to reflect on the lasting impacts of this history and our roles in eroding Indigenous communities and the accomplishments they have made. Important considerations of the connections between palliative and end-of-life care and systemic challenges are brought to light by looking at the Terrace Hospice Society (THS).
The THS is located on the unceded Tsimshian territories in Northern British Columbia (BC) and provides psychosocial and emotional hands-off palliative and end-of-life support to diverse rural and remote communities. Many of these communities are home to Metis, Tsimshian, Nisga’a, Gitxsan, Wet’suwet’en and Haisla peoples. Despite the importance of palliative and end-of-life care, these communities lack resources due to the challenges of rural and remote locations, as well as systemic issues resulting from colonization. However, many of the THS’s efforts demonstrate ways to mitigate these barriers and contribute to truth and reconciliation at a community level. We sat down with Sandy Pringle, the Nav-Care Coordinator and Community Liaison/Outreach Worker at the THS to gain more insight on the challenges they face and the communities they support.
A fundamental barrier faced by rural and remote areas such as Terrace and the surrounding communities to accessing palliative and end-of-life care is that people tend to fear the words palliative care, thinking it is a death sentence. Rather, palliative care provides comfort support, with or without curative care. Other barriers include poor transportation between communities despite the frequent need to travel to access medical care, a lack of respite services, long wait times to enter long-term care facilities, poverty and isolation, and many others. These challenges are further exacerbated by systemic racism towards Indigenous individuals who constitute a large proportion of the population in these areas. Sandy described that in order to overcome these barriers, it is essential to identify a leader in each community who understands their unique and often unseen needs, struggles, and strengths. These leaders can describe and advocate for meaningful psychosocial and emotional support in a way individuals outside of the community do not fully understand – and the THS is working towards establishing relationships with communities who see the value of such support. In return, the non-profit society is learning about the uniqueness of each area.
For example, the Family and Friend Caregiver of the Northwest program (FFCGNW), which provides services to caregivers of those with a variety of illnesses, is supported by a cultural safety and humility champion Esther Stewart, who is native to Gingolx, a coastal Indigenous community in Northern BC. Esther has been instrumental in training THS volunteers about Cultural Safety and Humility by outlining challenges many Indigenous communities have experienced because of historical and present racism and helping Indigenous and non-Indigenous communities better understand the depths of the challenges faced at end of life and through grief. It is the FFCGNW program’s hope that more champions like Esther will be identified, enabling community members to be trained as volunteers and easing the burdens of community members with fragile health.
Despite multiple barriers, there are several innate benefits of rural and remote communities when it comes to palliative (comfort) and end-of-life care. For example, it is not uncommon that close ties exist among families and friends within a rural community, regardless of cultural and ethnic backgrounds. Many people within rural communities have known each other for most of their lives. This solidarity of community and shared reliance with one another is a rural strength to be built on, particularly when one has fragile health or is dying – a time when many of us face the unknown with fear and avoidance. Through relationship building, the FFCGNW program has learned about the key components that are needed to support diverse communities. These components include understanding the unique needs of each community and developing strong relationships with community leaders. Together, Nav-CARE and the FFCGNW program endeavors to interact face to face with these leaders and care providers with training opportunities and follow-through with mentoring and problem-solving as needed. Ultimately, Sandy attributes the development of trust and strong relationships as the cornerstones of the THS’s ability to support these communities.
To establish these strong relationships, Sandy took a ‘boots on the ground’ approach and consistently visited communities, engaging with individuals in local coffee shops and grocery stores and demonstrating through her actions that she was there to support anyone in developing more control of culturally appropriate support for those who need extra support or are touched by death and dying. While Sandy’s job involves a lot of driving long distances, the impacts of these efforts are undeniable. This is evidenced by the requests from these communities for hospice volunteer training or perhaps support for an Indigenous community member if and when they travel to the Terrace hospital for their last days of life.
Over the next few months, the THS is implementing Nav-CARE (Navigation: Connecting, Advocating, Resourcing, Engaging), a program that utilizes trained volunteer navigators to support adults living in the community with declining health, but not necessarily facing immanent death. Both Nav-CARE and the FFCGNW program are committed to providing training opportunities, ensuring follow-through, and truly engaging community members in the advocacy and care of vulnerable people. This commitment to create trust among providers and community members may be a small step in eroding the lasting barriers of colonization. The THS demonstrates that as we continue to provide services in rural and remote communities, we must remember that we cannot leave anyone behind because of geography and/or race. Through trained volunteers, they hope to foster collaboration with community resources and families to access self-directed, needs-based care. Further, their mission is to collaborate with remote communities to achieve meaningful, culturally appropriate support in order to have a better tomorrow for all.