Palliative and end-of-life care experiences

In 2020–21, BHI began to develop and test approaches to measuring experiences of palliative and end-of-life care, on behalf of the NSW Ministry of Health’s Health and Social Policy Branch. The aim was to address data gaps in this area and enhance understanding of how well services are meeting patients’ needs.

As part of this program of work, BHI developed tailored question sets for palliative care patients and carers about their experiences with NSW healthcare services. The question sets will support statewide collection of information about these patients’ and carers’ experiences, to support evaluation and drive improvements.

The report, Measurement Matters – Measuring experiences of palliative and end-of-life care, describes the extensive research and consultation behind the development of the question sets, including with patients, carers and palliative care professionals.

The results of this work are presented in question sets, not full questionnaires. Finalised questionnaires can only be produced in the context of a specific survey approach, after identifying a cohort of patients and/or carers and defining an analytics plan. These steps should determine the use of specific questions.