Palliative care services in Australia

Web report

Last updated: 28 Oct 2022

Media release

AIHW

Australian Institute of Health and Welfare (2022) Palliative care services in Australia, AIHW, Australian Government, accessed 29 March 2023.

APA

Australian Institute of Health and Welfare. (2022). Palliative care services in Australia. Retrieved from https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia

MLA

Palliative care services in Australia. Australian Institute of Health and Welfare, 28 October 2022, https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia

Vancouver

Australian Institute of Health and Welfare. Palliative care services in Australia [Internet]. Canberra: Australian Institute of Health and Welfare, 2022 [cited 2023 Mar. 29]. Available from: https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia

Harvard

Australian Institute of Health and Welfare (AIHW) 2022, Palliative care services in Australia, viewed 29 March 2023, https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia

Latest edition

Palliative care for people living in residential aged care

In 2020–21, people in permanent residential aged care (PRAC) with an Aged Care Funding Instrument (ACFI) appraisal indicating need for palliative care accounted for 1.9% (4,500) of all residents (243,500), 3.5% (2,400) of all new admissions (67,100), and 6.1% (4,100) of all exits (67,220) from permanent residential aged care. This section provides information on the characteristics of admissions and people using permanent residential aged care, including those appraised as requiring palliative care and other care based on the ACFI.

Note that national reporting on the need for and receipt of palliative care in residential aged care is an underestimate, as available data only reflects those appraised as requiring end of life palliative care and for whom a claim was submitted. Information on actual service provision and that palliative care maybe required for a longer period (not just end of life care) is a considerable gap in the national data. See below and the data sources section for further information on the residential aged care data presented in this report.

The information in this section was last updated in May 2022.

Data on this page and context for interpreting palliative care data from the Aged Care Funding Instrument Expand

The Australian Government subsidises residential aged care services for older Australians whose care needs are such that they can no longer remain living in their own homes. Residential aged care services provide accommodation and services to people who require full-time care, including personal and nursing care, due to chronic impairments and a reduced degree of independence in activities of daily living.

This report uses data from AIHW’s National Aged Care Data Clearinghouse, based on Aged Care Funding Instrument (ACFI) appraisals, which are used to determine Australian Government subsidies for people living in permanent residential aged care services. Note that, due to COVID-19, ACFI reviews are being undertaken from the Department of Health's offices and have been since 2020 (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. Note that the data in this section reflects whether a resident was appraised as needing palliative care, rather than whether they actually received the services. Information on actual service provision is a significant gap in the national data.

The total number of people needing and receiving palliative care services in residential aged care is a key information gap. This report uses available data based on ACFI claims to identify people appraised as requiring end of life 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 palliative care in their last year of life before dying in residential aged care (AIHW 2021b).

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.

For more information on the data used in this report, refer to the Data Sources section. For more information about the ACFI, please refer to the Department of Health website.

Key points

In 2020–21, people in permanent residential aged care (PRAC) with an ACFI appraisal indicating need for palliative care:

Accounted for 1.9% (4,500) of all people in PRAC, 3.5% (2,400) of all new admissions, and 6.1% (4,100) of all exits from PRAC.
Almost 3 in 5 (59%) were aged 85 years and over.
Almost 1 in 4 (22%) had cancer listed as the first condition on their appraisal, compared with 3.5% for those appraised as requiring other care.
1 in 2 (50%) exited PRAC within 8 weeks of admission, compared with 8.5% for those appraised as requiring other care
Overall, remained relatively stable in the 5 years to 2020–21.

Data downloads:

PDF version of this section

Latest data tables

Data sources

Who was appraised as requiring palliative care?

In 2020–21, there were 4,500 people and 2,400 new admissions appraised as requiring palliative care in PRAC (1.9% of all people and 3.5% of all new admissions).

In 2020–21, among people using PRAC with an ACFI appraisal indicating need for palliative care:

Slightly more were women than men –2,400 compared with 2,100. However, as a proportion of all people in PRAC, males were almost twice as likely to be appraised as requiring palliative care as females (2.5% and 1.5%, respectively; see Figure AC.1.).
Almost 3 in 5 (59%) were aged 85 years and over, similar to the proportion for those not appraised as requiring palliative care (61%) (Figure AC.1.).
Most were living in Major cities (60%) and Inner Regional areas (30%), consistent with the pattern for those not appraised as requiring palliative care (70% and 22%, respectively; Figure AC.1.).
- As a proportion of the population living in these regional areas, those living in Inner Regional areas had the highest rate with ACFI appraisal indicating need for palliative care (30 per 100,000 population) – 1.6 and 2 times as high as for those living in Outer Regional areas and Major Cities (19 and 15 per 100,000 population, respectively).
- Those living in Inner Regional areas also had the highest rate for those not appraised as requiring palliative care – 1.3 times as high as for Major cities and Outer Regional areas (1,147 per 100,000 compared with 883 and 900, respectively; Figure AC.1.
Rates varied across the states – Tasmania had the highest population rate (34 per 100,000 population) and Northern Territory the lowest (4.5 per 100.000). For those not appraised as requiring palliative care, South Australia had the highest rate and the Northern Territory the lowest.

Cancer diagnosis more likely in those appraised as requiring palliative care than other care in PRAC Expand

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. Data in this report refers to the first listed condition only (see Data sources: National Aged Care Data Clearinghouse). 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 PRAC.

Almost 1 in 4 (22%) people appraised as requiring palliative care had cancer listed as their first condition on their appraisal compared with 3.5% for those not appraised as requiring palliative care (see Table AC.3.). Diseases of the circulatory system was the next most common medical condition after all cancers combined, followed by musculoskeletal for those appraised as requiring palliative care, with this order reversed for those appraised as requiring other care (see Table AC.10).

For mental and behavioural diagnoses listed first in the ACFI appraisal, dementia (including alzeheimer’s disease) was the most common mental and behavioural diagnosis for all PRAC residents (44% for palliative care and 51% for other 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 and in the community. 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 2021a) 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).

How long did people stay and how was care completed?

In 2020–21, among people using PRAC with an ACFI appraisal indicating need for palliative care:

1 in 2 exited PRAC within 8 weeks of admission – 32% within 4 weeks, 50% within 8 weeks, 69% within one year, and 21% after 2 years. For those appraised as requiring other care, 2 in 3 exited after 1 year – 32% within 1–3 years and 34% after 3 years, while less than 9% exited within 8 weeks (Figure AC.2.).

The shorter stays for people appraised as requiring palliative care are consistent with purpose of the funding for palliative care under the ACFI that is provided specifically for ‘end of life’ care (see above for further details).

In 2020–21:

Death was the most common reason for exit from PRAC – 95% and 82% of exits for people using PRAC with a palliative care and other care appraisal, respectively. Further, return to the community and to other residential care was far more common among those appraised as requiring other care (4.4% and 9.3% of exits, respectively) than for those appraised for palliative care (0.8% and 2.2%, respectively; see Figure AC.2.).
Over 1 in 4 people in PRAC required hospital leave from PRAC – 31% and 28%, respectively for those appraised as requiring palliative care and other care (see Table AC.12.)

Figure AC.2. Exits from permanent residential aged care, by length of stay, 2020–21

Have there been changes over time, including during the COVID-19 pandemic?

In the 5 years to 2020–21, the number of people using PRAC appraised as requiring palliative care and other care has remained relatively stable, with slight fluctuations over this period (see Figure AC.3.). However, the number of new admissions each year has been falling slightly between 2017–18 and 2020–21 (from 2,700 to 2,400 for palliative care appraisals and from 69,200 to 64,800 for other appraisals).

These declines in palliative care admissions are unlikely to be due to a fall in the need for palliative care, but rather may reflect the application of the ACFI in recent years (see above and Inquiry Report, Section 3; Productivity Commission, 2017 for further details). Further, in 2020, ACFI reviews were undertaken from the Department of Health's offices since 2020 to minimise COVID-19 transmission risks (DoH 2020).

Residential aged care and COVID-19

The COVID-19 pandemic, commencing in Australia from March 2020, has had a significant impact on the aged-care sector and those receiving aged care. People living in PRAC are at an increased risk of COVID-19 due to a high proportion who are aged 70 and over (94% of people using PRAC), and/or who are immunocompromised due to conditions such as cancer and other chronic diseases (DoH 2021a).

By looking at monthly PRAC data it may provide insights on the impact of the COVID-19 pandemic on palliative care in the PRAC setting. These data highlight that there was a large drop in the number of new admissions for PRAC between March and May 2020 – 28% and 24% decline for people appraised as requiring palliative and other care, respectively – reaching its lowest level in May 2020 over the 3 year period (July 2018 to June 2021). Another dip was also observed in October 2020 and January 2021 for palliative care admissions and in August 2020 and January 2021 for other care.

These declines may in part be due to the stricter public health restrictions during these months, however fluctuations in admissions may reflect a number of factors that may or may not be related to the COVID-19 pandemic. By February 2021, number of admissions had largely recovered to similar levels observed prior to the COVID-19 pandemic in March 2020.

In terms of exits from PRAC and reasons for exit no clear patterns were observed during 2020 and 2021, with various fluctuations observed between March 2020 and June 2021.

Figure AC.3: Admissions and people using permanent residential aged care appraised as requiring palliative and other care, 2016–17 to 2020–21

References Expand

Data sources Expand

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 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 are used to determine Australian Government subsidies for permanent aged care residents. 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 2016).

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 2016).

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 2016). 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 Department of Health ACFI User Guide website.

The method used to derive the number of permanent aged care residents in this report differs from the approach used in other reporting, such as through the AIHW GEN aged care data website. This commonly presents the number of people in PRAC at 30 June. In the current report, numbers include those who have been a resident at any point during the reporting period. This approach has been taken due to the high proportion of palliative aged care residents who are residents 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

Department of Health (2016) Aged Care Funding Instrument (ACFI): User Guide, Department of Health, Australian Government, accessed 27 May 2021.

Key concepts Expand

Key concept	Description
Comorbidity	Comorbidity refers to occurrence of more than one condition/disorder at the same time.
Exit from PRAC	An exit from PRAC occurs when a person who is a permanent resident stops receiving care from a particular PRAC service. The reasons for exit may include death, admission to hospital (excluding where the person is on hospital leave), return to community (such as to family or home), move to another residential aged care facility.
Hospital leave	A short-term stay in hospital of at least one night, which does not involve permanent discharge from permanent residential aged care.
ACFI diagnosis	The ACFI consists of 12 questions about a person’s assessed care needs, and two diagnostic sections: Mental and Behavioural Diagnosis and Medical Diagnosis. Medical diagnosis includes any disease or disorder, excluding the mental and behavioural disorders recorded in the ACFI Mental and Behavioural Diagnosis checklist. See the Aged Care Funding Instrument User Guide for a complete list of Mental and Behavioural Disorders. A person may be appraised as having more than one mental and behavioural disorder. A person may list up to three most significant medical disorder in terms of impact on care needs.
Palliative care in permanent residential aged care (PRAC)	Palliative care in permanent residential aged care is ongoing care involving very intense clinical nursing and/or complex pain management in the residential care setting. In this report, only those people and admissions to permanent residential aged care who have been appraised by approved providers as requiring ACFI funding for end of-life palliative care (i.e. last week or days of life) are included in the group ‘appraised as requiring palliative care’.
Permanent admission	An admission to a permanent residential aged care service. This captures both new entries and transfers between services.
Permanent resident	A person who is receiving long-term care in a permanent residential aged care (PRAC) service.
Specified care and services	The care and services that all approved providers of permanent residential aged care must provide to any person as needed, as set out by the Schedule of specified care and services for residential care services (Schedule 1, Quality of Care Principles 2014) within the Aged Care Act 1997.

Palliative care services in Australia

Citation

AIHW

APA

MLA

Vancouver

Harvard

Palliative care for people living in residential aged care

Key points

Data downloads:

Who was appraised as requiring palliative care?

Figure AC.1: Characteristics of people using permanent residential aged care, 2020–21

How long did people stay and how was care completed?

Have there been changes over time, including during the COVID-19 pandemic?

Residential aged care and COVID-19

National Aged Care Data Clearinghouse

Reference

AIHW

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