Aileen Collier presents highlights from her presentation at the Te Arai Research Group conference. Download her Power Point
We know that Specialist palliative care services can contribute to improved care and reduce symptom burden for people with life-limiting illness. Yet the way services are configured varies hugely. They are often provided by a variety of different organisations. More often than not this means care providers are based in different locations.
We don’t fully understand how high quality home based palliative care is to be achieved or how it unfolds in real life practice. Along with this the kinds of measures we use to evaluate home-based palliative care don’t always capture the kinds of things that matter most to patients and their families.
Despite the best of intentions, academic, government, and public discourse about people who are dying is often pessimistic and unconstructive. Efforts to raise awareness of the needs of people with life-limiting illness can often, albeit unintentionally, position people as vulnerable and without a voice rather than as living and wishing to contribute to life until death. Likewise, a focus on gaps in care can position clinicians as inept and ineffectual, rather than as agents of change.
What makes care brilliant?
This gave us the impetus as researchers to embark on an investigation of home-based palliative care beyond a deficit model. Instead we wanted to understand how and why things happened well –that is -what made care brilliant. Working collaboratively with clinicians, patients and families in two states of Australia (NSW and SA) we spent 18months capturing everyday practices using audio and video.
Reflexive viewing of footage provided the opportunity for community clinicians – usually working as sole practitioners to ‘see’ and learn from how other disciplines and colleagues’ practices. This brought about a new way of ‘viewing’ each other and their roles in the team and new understandings of what each person brought and built new capacities of working.
As a clinician from SA expressed: “Now, when I visit patients I have this kind of eagle I view from above, a bird’s eye view. I take a wide- angle lens from above”
Our findings show that Brilliant home-based palliative care is conditional on: connections between clinicians, patients, and carers; connections beyond the services with external colleagues; as well as connections between the two teams of interstate co-researchers. Greater emphasis on building these relationships is needed to promote brilliant home-based palliative care.
Co-authors: Hodgins, M., Crawford, G.B, Every, A., Womsley, K., Jeffs, C., Houthuysen, P., Kang, S., Thomas, E., Weller, V., Van, C., Farrow, C. Dadich, A.
Acknowledgements: Agency for Clinical Innovation, Modbury Hospital, Flinders Unversity, Staff, patients and carers who kindly participated Brilliance Group who champion this project and exude brilliance.