Palliative care services in Australia

Australia’s government-funded aged care system offers a continuum of care under 3 main types of service:

• Home support (Commonwealth Home Support Programme), which provides entry-level services focused on supporting individuals to undertake tasks of daily living to enable them to be more independent at home and in the community.

• Home care (Home Care Packages Program), a more comprehensive package of home-based support for older people with complex care needs to enable them to live independently in their own homes, which includes 4 levels of packages from basic care needs (level 1) to high care needs (level 4).

• Residential aged care, which provides support and accommodation for people who have been assessed as needing higher levels of care than can be provided in the home, and the option for 24-hour nursing care. Residential care is provided on either a permanent, or a temporary (respite) basis. 

From March 2018 to September 2022, the Aged Care Funding Instrument (ACFI) was a tool for assessing the care needs of people entering and living in permanent residential aged care. The tool is used to allocate government funding to residential aged care service providers based on the needs of the people in their care, regardless of the actual care planning or care provided by the service to the assessed individual. The ACFI is not a comprehensive assessment; it is focused on factors 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. For more information about the ACFI, refer to the ACFI User Guide (DoH 2017). 

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, where ongoing care will involve very intensive clinical nursing and/or complex pain management in the residential care setting (DoH 2017). From 1 October 2022, a new care funding model (Australian National Aged Care Classification, AN-ACC) has replaced the ACFI, which includes 13 variable funding classes that reflect the different care needs of residents in each class. There is a palliative care class for people near end-of-life – this allows frail residents with a life-expectancy of less than 3 months, with an approved palliative care plan, to enter a facility without an AN-ACC assessment.

The number of people needing and receiving palliative care services in community and residential aged care is a key data gap. Available data is based on those in permanent residential aged care appraised as requiring end-of-life palliative care and for whom a claim was submitted, rather than whether they actually received the services. Analysis by the AIHW has indicated that 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 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. 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.

Data in this report is based on ACFI appraisals, between 1 July 2021 to 30 June 2022, including trend data from 2017–18. For more information on the data used in this report, refer to the Data sources section.

During the ACFI appraisal process, information is recorded on relevant mental and behavioural diagnoses and up to 3 other medical diagnoses relevant to a person’s care needs, based on information collected in 2 diagnostic sections – Mental and Behavioural Diagnosis and Medical Diagnosis (includes any disease or disorder, excluding the mental and behavioural disorders recorded in the ACFI Mental and Behavioural Diagnosis checklist). Data in this report refers to the first listed condition only (see Data sources for further information). Furthermore, conditions recorded on the ACFI are not necessarily related to palliative care status but do provide insights on the types of medical conditions at the time of admission to permanent residential aged care (PRAC).

In 2021–22, 1 in 5 (21%) people appraised as requiring palliative care had cancer listed as their first condition on their Medical Diagnosis appraisal compared with 3.7% for those not appraised as requiring palliative care.

For diseases other than cancer, circulatory system disease was the most common medical condition (21%), followed by musculoskeletal (11%) for those appraised as requiring palliative care, based on Medical Diagnosis. However, for those not appraised as requiring palliative care, musculoskeletal conditions were the most common (21%), followed by circulatory system disease (20%; see Table AC.2).

For the first listed condition on the Mental and Behavioural Diagnosis, dementia (including Alzheimer’s disease) was the most common for all people in PRAC (46% for people requiring palliative care and 51% for people not requiring palliative care).

It should be noted that identifying mental health conditions and dementia in older people can be difficult. For example, conditions such as dementia and depression are often under-diagnosed and under-treated in PRAC. In addition, many mental health conditions share similar symptoms, which can present additional challenges in making a diagnosis. Additional information is available from AIHW publications Dementia in Australia (AIHW 2022) and Depression in residential aged care 2008–2012 (AIHW 2013). Further, it should be noted that the ACFI is focused on components of the person’s care needs that affect the cost of care, rather than providing a comprehensive, diagnostic assessment (see above for further details).

AIHW (Australian Institute of Health and Welfare) (2013) Depression in residential aged care 2008–2012, Canberra: AIHW, Australian Government, accessed 20 January 2023.

AIHW (2021) Interfaces between the aged care and health systems in Australia – where do older Australians die? Canberra: AIHW, Australian Government, accessed 15 January 2023.

AIHW (2022) Dementia in Australia, Canberra: AIHW, Australian Government, accessed 25 January 2023.

DoH (Department of Health) (2017) Aged Care Funding Instrument (ACFI): User Guide, Canberra: Department of Health, Australian Government, accessed 27 January 2023.

DoH (2020) Protecting Older Australians: COVID-19 update 2 December 2020, Canberra: Department of Health, Australian Government, accessed 30 March 2022.

National Aged Care Data Clearinghouse

Data on palliative care in permanent residential aged care (PRAC) are sourced from the AIHW’s National Aged Care Data Clearinghouse (NACDC) that includes data on 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 were used to determine Australian Government subsidies for permanent aged care residents from March 2008 to September 2022. These data have been used for the analyses presented in this report.

The ACFI is a tool used to determine Australian government subsidies for permanent aged care residents, based on a person’s need for care across 3 care domains:

• activities of daily living
• cognition and behaviour
• complex health care (DoH 2017).

ACFI appraisals include:

• relevant mental and behavioural diagnoses outlined in the ACFI User Guide Mental and Behavioural disorders Checklist;
• up to 3 other medical diagnoses relevant to a resident’s care needs;
• 5 questions relating to a resident’s assessed care needs with regard to activities of daily living: nutrition, mobility, personal hygiene, toileting, and continence;
• 5 questions relating to a resident’s cognition and behaviour: cognitive skills, wandering, verbal behaviour, physical behaviour, and depression;
• 2 questions relating to the need for assistance with the use of medication and ongoing complex health care procedures and activities; with the need for palliative care being covered by these questions (DoH 2017).

Responses to ACFI questions are rated on a scale of A to D and are used to determine the level of care a person needs. While mental health or behavioural diagnoses, along with other medical diagnoses, can be recorded, the ACFI is not designed to be a comprehensive assessment tool.

Note that in this report, only the first listed mental and behavioural diagnoses and first listed other medical diagnosis are included in the analysis.

Note that the ACFI is primarily focused on components of the resident’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.

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 2017). Permanent residents who have been appraised as requiring palliative care under the ACFI are included in the ‘palliative care’ group described in this report. It should be noted that if a resident is already on the maximum ACFI Complex Health Care claim, services may not claim for palliative care, as it is not possible to increase the subsidy payable in this situation. For more information about the ACFI, refer to the ACFI User Guide(DoH 2017).

The method used to derive the number of permanent aged care residents in this report (any point during the reporting period) differs from the approach used in other reporting, such as through the AIHW GEN aged care data website (that commonly counts people as at 30 June in each year). This approach has been taken as people appraised as requiring palliative care tend to stay in PRAC for short periods of time.

Data presented in this report may differ from those published elsewhere due to differences in the preparation and analysis of the source data.

Reference

DoH (Department of Health) (2017) Aged Care Funding Instrument (ACFI): User Guide, Canberra: Department of Health, Australian Government, accessed 27 January 2023.