Palliative care and health service use for people with life-limiting conditions

Palliative care is an approach to treatment that improves the quality of life of patients and their families facing a life-limiting illness, as well as reducing the physical and emotional stress of dying (WHO 2014). Palliative care can be provided to patients in any health care setting, including specialist inpatient and community-based palliative care services, neonatal units, paediatric services, geriatric services, public and private hospitals, general practices, disability services, and residential and community aged care services. Palliative care is not limited to any specific condition, can be delivered at any stage of illness, and can accompany curative treatments. 

Identifying palliative care in existing data collections and across all health settings remains a significant challenge. While activity within specialist palliative care services can be readily identified as being ‘palliative care’, a large volume of care occurs outside of specialised palliative care settings, for example in primary care and residential aged care. Most national reporting uses single data sources, focussing on individual aspects of specialist palliative care, e.g. hospitalisations, use of medicines or contact with palliative care specialists (see AIHW 2022a for further details). This is valuable but does not provide insights into specialist palliative care in other healthcare settings or from non-specialist palliative health care providers. 

Linked data assets have the potential to provide a more complete picture of how people with life-limiting illness interact with the health-care system. The development and availability of the enduring linked data asset – National Integrated Health Services Information (NIHSI) – provides an opportunity to gain new insights on the types of services received by people with life-limiting illnesses, addressing a key data gap. It has the potential to inform future linked data studies on palliative care service use across health care settings. It can also identify key gaps in administrative data to inform future national data initiatives. The use of linked data for service providers and pathways of care was identified as critically important in the National Palliative Care Strategy 2018 (the Strategy; DOHAC 2018) and National Palliative Care and End-of-Life Care Information Priorities report (AIHW 2022b).

The aim of this report is to present, for the first-time, the types of health services received in the last year of life and in which settings for people with life-limiting conditions. It is also to better understand who is receiving these services, their health conditions and demographic, geographical and socioeconomic characteristics. These are explored for a population receiving specialist palliative care and a population considered in need of palliative care. Such information can be used to build our understanding of the level of need and unmet need for palliative care in Australia, critical for improving the service delivery.