Palliative care services in Australia

The AIHW’s National Aged Care Data Clearinghouse contains data for all recipients of government-funded aged care from 1997 onwards, including prior activity data for those in care in 1997. The holdings mostly relate to government-funded aged care programs operating under the Aged Care Act 1997 and include data on Aged Care Funding Instrument (ACFI) appraisals, which are used to determine Australian Government subsidies for people living in permanent residential aged care services. These data have been used for the analyses presented here. Note that, due to COVID-19, ACFI reviews were undertaken remotely in 2020 and will continue to be conducted remotely until further notice (DoH, 2020). This may affect comparability of analyses in this and future reports with data presented previously.

Funding for palliative care under the ACFI is provided specifically for ‘end of life’ care, which takes place during the last days or week of a care recipient’s life (DoH 2016). As specified in the ACFI User Guide, funding is provided for a ‘palliative care program involving end of life care where ongoing care will involve very intensive clinical nursing and/or complex pain management in the residential care setting.’ People living in permanent residential aged care who have been appraised as requiring palliative care under the ACFI definition are included in the ‘palliative care’ group described in this section.

There are several limitations in using ACFI claims to describe palliative care need or use in residential aged care and it is accepted that the number of ACFI claims involving palliative care is inherently lower than the total number of care recipients in residential aged care requiring palliative care. ACFI is primarily focused on components of the individual’s care needs that affect the cost of care. Consequently, the capture of information on a person’s care needs, including health conditions and need for assistance with activities of daily living, may be affected by their relevance to the cost of care and the number of available fields on the form. In addition, there is little or no incentive for a service to claim for palliative care for residents who are already on the maximum ACFI Complex Health Care claim as this claim does not change the subsidy payable in this situation.

Data linkage studies have started to illustrate the difference between palliative care estimates based solely on ACFI appraisal and other (albeit limited) data sources. For example, the AIHW report Interfaces between the aged care and health systems in Australia – where do older Australians die? indicates palliative care service delivery for people living in residential aged care may be higher than that captured through ACFI appraisals, based on how many people receive some form of palliative care in their last year of life before dying in residential aged care (AIHW, 2021).

In practice, it is possible to receive palliative care in residential aged care without having received an ACFI appraisal indicating the need for end of life palliative care. Additionally, ACFI only records care required during the last days or week of a person’s life and doesn’t take into account that palliative care may be delivered and/or required for a much longer period. Also note that the data available cannot confirm the extent or nature of palliative care actually provided for those who were funded for palliative care under the ACFI.