Merryn writes about Te Arai’s third annual research conference held earlier this month
Our research in New Zealand confirms that a lack of continuity across health and social care at the end of life is a central concern for service users: information is not transferred across care settings, care and treatment decisions are often not made with a broad perspective on a person’s health and social circumstances, and family carers typically feel they are ‘ghosts in the system’.
A recurrent issue I’ve also encountered in my working life is the false separation between the disciplines of palliative care and gerontology.
They share very similar concerns and, indeed, often address the same problems, but from different angles. Therefore, in our work – which straddles the boundary between ageing well and end of life care – we try and attend to both disciplines: their bodies of knowledge, spheres of practice and policy concerns.
The need to work better together is therefore well established. The how is more problematic and something we explored during the day. At a methodological level, what was apparent was the need to be able to explore issues from multiple perspectives. We need to be able to look at the big picture – for example, using large integrated datasets as Heather McLeod and Jackie Robinson showed in their presentation of the use of health and social care services in the last 12 months of life for people under the care of ADHB. We also need to be able to explore the individual contexts of people’s stories, as in, for example, the research Tess Moeke-Maxwell presented exploring cultural end of life care customs among Maori.
Over the coming weeks we will post the slides from each individual presentation, so watch this space for more information.
It is also clear that rising palliative care need, and what we euphemistically refer to as ‘economically constrained’ statutory health budgets, means we need to look at all our resources. Susan Fryer’s presentation highlighted that we are not currently doing this in the case of Health Care Assistants working in Residential Aged Care; her Master’s research project identified barriers to their full contribution to care of imminently dying residents in this setting. And last, but by no means least, Ros Capper’s fabulous keynote really brought home the fact that the contribution of family and whānau caregivers is very far from being realised due to a lack of support, and acknowledgement, from health professionals and the wider health system.
Over the coming weeks we will post the slides from each individual presentation, so watch this space for more information. For now I’d like to just acknowledge the work of the team in putting this event together, including our kaumātua for their invaluable support and Kristy Krang who did a fantastic job with the rather thankless task of trying to organise us all. Finally, I’d like to thank everyone who attended.