Palliative care debate must recognise the importance of informal carers

A University of Western Sydney researcher says today’s debate in State Parliament about the funding of palliative care in New South Wales is a positive first step in what will be a long battle for better end-of-life services.

Dr Debbie Horsfall, from the UWS School of Social Sciences and Psychology, is the lead researcher of the ongoing Caring at End of Life study which conducted a series of focus groups with 99 palliative care providers from August 2011 to April 2012.

She says it is encouraging that the issue of palliative care is being debated in parliament today, but it remains to be seen if a necessary reorientation of the health system will follow.

“Through our research, many palliative care service providers told us that caring networks of friends, family, neighbours and work colleagues were vital to providing good end of life care in the home,” says Dr Horsfall.

“Despite this, few formal service providers are able to actively support these informal networks; or help the primary carers mobilise or maintain them.”

Dr Horsfall says the problem is due to a lack of resources and a service provision orientation that fails to recognise communities of care.

“Our research shows that we need to make sure that people are receiving the right service, at the right time, in the right way – and that part of this ‘right service’ is working with unpaid carers and their support networks, not just individual clients,” says Dr Horsfall.

“If, for example, our community and palliative nurses were better funded, they would be better placed to be able to support the whole family and extended community of the carer and the dying person in their own homes, which in turn can have a positive impact on the well-being of the whole community. This kind of reorientation is also a lot more cost effective.”

Dr Horsfall says a well-resourced health system should acknowledge that a significant amount of people want to a die at home.

“Our study has already begun to show that people can and do die at home, and it can be a transformational experience for everyone involved – if caregivers have access to sustainable resources that enable them to care,” she says.

The Caring at End of Life research project research project is being conducted by Associate Professor Debbie Horsfall from the University of Western Sydney, in partnership with Dr John Rosenberg from Calvary Centre for Palliative Care Research ACT, Associate Professor Rosemary Leonard from CSIRO and Ms Gillian Batt from Cancer Council NSW.

This project is funded by the Australian Research Council in partnership with Cancer Council NSW and has been approved by the University of Western Sydney Human Research Ethics Committee (approval number H9255).

The researchers would welcome more conversations with people in the community who have cared for someone at the end of their life. For more information about the research, visit:


22 November 2012

Contact: Danielle Roddick, Senior Media Officer