Research points to gaps in optimal palliative care without community contribution

A recently published review of palliative and end-of-life care models concludes that more consideration should be given to patient preferences and the consumer experience.

Although an increasingly common theme is the need for integration of the various sources of care supporting dying people, the review found that models of care do not make systematic use of the consumer data available to them.

The literature review, funded by the WA Department of Health’s End-of-life and Palliative Care Program, has been published in the international journal, Healthcare. The review informs the WA Health Department’s interest and future work on including consumer perspectives in palliative care service models. 

The recent review was led by Palliative Care Research Professor Samar Aoun (Perron Institute and La Trobe University) and Associate Professor Bruce Rumbold (Director Public Health Palliative Care Unit, La Trobe University), building on their previous research in this field.  

The research found that in Australia and internationally, the consumer experience of palliative care was investigated poorly and that consumer contribution to service and policy design was limited and selective. 

“Evidence gathered points to a consensus that optimal end-of-life care integrates formal services and informal networks of care along the illness pathway,” Professor Aoun said.  

“Research concludes that any comprehensive model of end-of-life care must take very seriously the intersection between health service provision and social network support.  

“Integrated palliative care guidelines acknowledge the need to involve communities and unpaid caregivers, but most service models are designed within the boundaries of the health system.  

“Over the past decade, the claim that “end-of-life care is everyone’s responsibility” has appeared in national and regional palliative care policies around the world.  

“While more jurisdictions are beginning to draw upon a growing amount of quality assurance work on consumer experience in their policy formation, comprehensive strategies for shared responsibility are far less common. The stumbling block is the gulf established by contemporary policy and funding constraints that distinguish between professional and informal care.   

“Consumer experience should be incorporated in policy and service design through co-design that enhances the social network supporting dying people and their carers and puts this at the centre of a comprehensive, integrated care model,” Professor Aoun said.


Pictured: Professor Samar Aoun, Head of Palliative Care Research, Perron Institute