Dying as a health and social justice issue
July 1 2020
“Exciting news!!! We have just learned that our project exploring palliative care for communities experiencing socio-economic hardship has been funded by the Health Research Council.”
This project has been three years in the planning and involves a big interdisciplinary team of Te Ārai researchers (Jackie, Merryn, Tess, Lisa, Stella, Janine, Jinfeng), colleagues from Population Health (Dan Exeter and Bert van der Werf) and the Faculty of Arts (Sarena Pearson and Shuchi Kothari), colleagues working in District Health Boards – Andrew Old (Waitemata DHB), Emily Gill (Bay of Plenty DHB), community partners Rākau Tautoko – led by Tara Moala, and international advisor Andrea Grindrod.
Why is the research important?
International research has identified that people living in areas of deprivation have reduced access to specialist palliative care services. They are less likely to die in a hospice or access other palliative care services known to facilitate home dying and improve overall satisfaction with end-of-life care. However, there is no evidence for Aotearoa, New Zealand about how deprivation influences health service utilisation at the end-of-life or determines place of death. Critically, there is also no information from people living in communities located in areas of deprivation about the reasons for current patterns of health service utilisation at end-of-life, or their aspirations for and experiences of end-of-life care.
The proposal was written long before we could imagine the current situation we are living in. Nevertheless, the Covid-19 pandemic has brought inequities in health service access – and death and dying – to the fore. We therefore believe exploring the social determinants of end of life experience is both timely and of critical importance.
Aim
Working from a public health and health equity perspective, this project will investigate end-of-life service access and utilisation for people living in areas of deprivation, explore the strengths and challenges communities located in areas of deprivation experience at end-of-life, and work in partnership with communities to identify practical strategies with the potential to improve their end-of-life experience.
Discussions with our amazing Te Ārai kaumātua were critical to shaping our approach, particularly in terms of adopting an area based approach and focusing on community, whānau and individual strengths.
Design and Methods
We will undertake a 3-phase mixed-methods study in two District Health Board populations: Auckland DHB (ADHB) and Bay of Plenty DHB (BoPDHB). Phase 1 will use routinely collected data to identify associations between area deprivation and health service utilisation in the last 12 months of life (including ‘specialist’ and ‘generalist’ palliative care services) and place of death. Accessibility scores will also be developed that measure: supply of palliative care services, population demand for the services, and travel cost between the demanding populations and services. Phase 2 will explore and extend Phase 1 findings with communities experiencing high levels of deprivation through individual interviews with people with life limiting illness and their family/whānau, focus groups with service providers, and marae-based hui. Phase 3 will involve community members in identifying strategies they feel will improve end-of-life experience; this process will be overseen by a Community Advisory Group in each locality and draw on participatory and creative research methods. The He Pikinga Waiora Implementation Framework, which has indigenous self-determination at its core, will underpin phases 2 and 3.
The project will start in September and run for 3 years. We’ll keep you updated on our progress via the blog. If you’d like further information now, please get in touch: m.gott@auckland.ac.nz