The Targeted Call for Research into End of Life Care was prioritised by the Australian Health Ministers’ Advisory Council (AHMAC) Working Committee, which works with NHMRC to identify areas of priority research that could be funded, possibly jointly with States and Territories. NHMRC opened this TCR on 2 September 2020 and closed on 28 October 2020.
For the purposes of this TCR, end of life care is understood to be part of palliative care; that is, the care and services given to people and their families who are facing the end of their life. End of life care may include, but is not limited to:
- knowing when death is coming and understanding what can be expected
- having access to information and excellent care
- patients, their families, carers and health professionals having access to spiritual and emotional support, as required
- patients and their families and care.
End of life care involves diverse healthcare services and research areas. A range of expertise needs to be coordinated to improve end of life care services including basic scientists, social scientists, psychologists, doctors, nurses, allied health professionals, epidemiologists, data scientists, economists, policy makers, consumer and peak body groups, ethicists and fundraisers.
There is currently limited evidence to inform policy and practice on matters to do with end of life care. For example, there is limited evidence for sustainable models providing systematic integrated end of life care, or on understanding the drivers and impacts of treatments that may be futile. Models of care also need to be responsive to, and reflective of, populations with varying needs and preferences, including children, neonates, individuals with a disability, rural and remote communities, Aboriginal and Torres Strait Islander peoples, and culturally and linguistically diverse groups.
Successful applications for this TCR aimed to:
- understand how to provide high quality, evidence-based end of life care, in an environment that is person-centred; recognising, accommodating and respecting the preferences and values of patients, their families and carers
- increase the awareness of patients, families, carers and the community of the options, preferences and ethics for end-of-life care
- identify best practice support for families and best practice training for carers and health/allied health professionals
- support the development of end-of-life care models which are systematic, integrated, flexible, culturally safe, appropriate according to need, and sustainable
- use data and evidence for service development, monitoring and quality assurance.
Outcomes from funded applications are expected to:
- stimulate research into best practice approaches to end-of-life care that are meaningful for patients, families and carers
- identify health system approaches to sustainable, cost effective and person-centred end of life models of care
- increase the capacity for patients at the end of their life, to be cared for in their preferred place of care
- develop research capacity in the field of end-of-life care.
