BHI Palliative Care – experiences of patients and carers project

New South Wales (NSW) Health has identified gaps in systematically collected patient and family/carer (‘carer’) experience data to support monitoring and evaluation of the NSW Health End of Life and Palliative Care Framework 2019–2025. The Bureau of Health Information has been charged with leading the development and testing of palliative care patient and carer experience surveys. This work will assist with monitoring quality of care provision and inform strategies to improve patient and carer experience in NSW Health public services. People with palliative care needs due to life-limiting illness constitute a patient population for whom healthcare experience takes on unique significance, because care is focused on improving patients’ subjective experience of quality of life rather than disease-related outcomes. Therefore the team at the BHI contracted the expertise of researchers experienced in palliative care (from the Queensland University of Technology and University of Technology Sydney) to focus on:

1.  Identifying what aspects of care matter most to people with palliative care needs and their carers in community and hospital settings
2. Identifying candidate survey items developed previously to measure experience in this population
3. Understanding the perspectives of consumer representatives about the available survey items – do these measure what is needed / any gaps?
4. Exploring the preferences of patients with palliative care needs and their carers regarding when and how they would like to be asked about their experience of care
5. Refining the proposed question set to ensure survey questions that are actionable, unambiguous, unbiased and relevant to the quality of palliative care received at home or in a NSW Health hospital
6. Testing the proposed quality of palliative care survey with patients with palliative care needs and their carers to inform final reporting.

The outcomes from this important work will have relevance across jurisdictional borders as we strive to amplify the voice of patients with palliative care needs, and their carers in relation to their health care experience to inform ongoing improvement work.

Project outcomes: 

• A state based (NSW) patient and family/carer quality of care experience survey, for people with palliative care needs.

Project partners:

• University of Technology Sydney, Improving Palliative, Aged and Chronic Care Centre