New Report: The Voices of Underserved Communities in Palliative Care
Photo by Natalie Anderson
Te Ārai were commissioned by Te Whatu Ora to collate evidence relating to communities underserved by palliative care to inform their new palliative care workstream. This report represents the culmination of that work. We brought together a large group of Te Ārai researchers, as well as additional experts from Aotearoa and Canada. The graphic design work was expertly undertaken by Hinemaukurangi Simpson within a te ao Māori framework.
This report foregrounds the voices of people from communities underserved by palliative care, recognising that this is the place at which any work to increase equity in palliative care provision must start. We provide a snapshot of key issues for nine such communities: people experiencing homelessness; incarcerated people; people living in areas of rural deprivation, gang affiliated/related whānau, members of rainbow communities, people from refugee backgrounds, people experiencing serious mental illness, people with a learning disability, and children and young people.
For each of these communities we present a story from a lived experience expert and a story from a service provider. These stories convey the resilience and resourcefulness of individuals who have faced significant inequities in their life. They also speak to the important work undertaken by service providers to deliver the best care they can, in often challenging situations. In addition, we provide an evidence summary for each community which synthesises the experiences of hundreds of other people to highlight what we currently know about their palliative care and end of life experiences. This information is based upon systematic reviews of all NZ-based published research and our own research and consultation. However, for most of these communities, the studies we have conducted are the first of their kind in NZ and more work is needed to fully understand the diverse end of life circumstances people experience.
We also collate all available published evidence regarding Māori and Pacific experiences of palliative and end of life care, work led by Kathleen Mason and Elizabeth Fanueli respectively. Overall, their findings indicate that there is still much to do to ensure culturally safe palliative care across all NZ health settings. Finally, we provide two resources to guide people who want to begin to address inequities in palliative care. He Tapu Te Tangata (The Sacred Person) is a conceptual framework developed from the Te Whakahekenga (Dying as a health and social justice issue) project findings. This framework acknowledges the need to respect the sanctity or the wholeness of a person and can be used as a practice guide for healthcare professionals. Finally, we conclude with principles to guide individuals and organisations who want to contribute to much needed equity efforts in palliative care. These highlight that, in any equity focused work, we need to start with ourselves and the organisations we work for.
Read the report here!