Palliative care for people living in residential aged care
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In 2021–22, people in permanent residential aged care (PRAC) with an Aged Care Funding Instrument (ACFI) appraisal indicating need for palliative care accounted for 2.0% (4,800) of all people (246,000), 3.5% (2,400) of all new admissions (69,100), and 6.0% (4,300) of all exits (72,100) from permanent residential aged care. This section provides information on the characteristics of admissions, exits and people using permanent residential aged care, including comparison between those appraised as requiring palliative care and those not appraised as requiring palliative care based on ACFI.
Note that there is limited data on the need for and receipt of palliative care among people accessing home-based and residential aged care services. 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. 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 2023.
Australia’s government-funded aged care system offers a continuum of care under 3 main types of service:
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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.
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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).
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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.
Key points
In 2021–22, among people in permanent residential aged care (PRAC) with an ACFI appraisal indicating need for palliative care – accounted for 2.0% (4,800) of all people in PRAC, 3.5% (2,400) of all new admissions to PRAC, and 6.0% (4,300) of all exits from PRAC:
- almost 3 in 5 (59%) were aged 85 years and over
- 1 in 5 (21%) had cancer listed as the first condition on their appraisal, compared with 3.7% for those not appraised as requiring palliative care
- 1 in 2 (50%) exited PRAC within 8 weeks of admission, compared with 7.9% for those not appraised as requiring palliative care
- death was the most common reason for exit from PRAC – 95% compared with 85% for those not appraised as requiring palliative care.
Between 2017–18 and 2021–22, the number of people in PRAC (including those appraised as requiring palliative care) has remained relatively stable; however, the number of new admissions to PRAC has decreased over the same period – by 11% from 2,700 to 2,400 for those appraised as requiring palliative care and by 3.7% from 69,200 to 66,600 for those not appraised as requiring palliative care.
Data downloads:
Who was appraised as requiring palliative care?
In 2021–22, there were 4,800 people and 2,400 new admissions for people appraised as requiring palliative care in PRAC (2.0% of all people and 3.5% of all new admissions). Among people using PRAC with an ACFI appraisal indicating need for palliative care (Table AC.1 and Figure AC.1):
- More were women (55%) than men – 2,600 compared with 2,200. However, as a proportion of all people in PRAC, men were 1.5 times as likely to be appraised as requiring palliative care as women (2.5% and 1.7%, respectively).
- Almost 4 in 5 (78%) were aged 80 years and over, same as the proportion for those not appraised as requiring palliative care.
- 2 in 3 (69%) were born in Australia, similar to the proportion for those not appraised as requiring palliative care (66%).
- Most were living in Major cities (61%) and Inner regional areas (30%), however as a proportion of the population living in these regional areas, those living in Inner regional areas had the highest rate – 31 per 100,000 population compared with 16 and 19 per 100,000 population for those living in Major cities and Outer regional areas. This is consistent with the pattern observed for those not appraised as requiring palliative care.
- Rates varied across the states and territories – Tasmania had the highest population rate (31 per 100,000 population) and Northern Territory the lowest (3.6 per 100,000). For those not appraised as requiring palliative care, South Australia had the highest rate (1,200 per 100,000) and Northern Territory the lowest (250 per 100,000).
Context for interpreting palliative care data from the Aged Care Funding Instrument
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: National Aged Care Data Clearinghouse 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).
Figure AC.1: Characteristics of people using permanent residential aged care, 2021–22
Figure AC 1.1: This interactive data visualisation shows the number and rate (per 100,000 population) of people using permanent residential aged care by assessment for requiring palliative care and by sex and age group, in 2021–22. The number and rate (per 100,000 population) of males appraised as requiring palliative care was higher than females in all age groups (except for 85 and over age group that the number of females was higher than males). The number and rate (per 100,000 population) of females not appraised as requiring palliative care were higher than males for 75 and over age groups, while for age groups under 75 males were higher than females.
Figure AC 1.2: This interactive data visualisation shows the number and rate (per 100,000 population) of people using permanent residential aged care by assessment for requiring palliative care and by remoteness areas, in 2021–22. Major cities had the highest number of people using permanent residential aged care, both for those appraised and not appraised as requiring palliative care, while Inner regional had the highest rate (per 100,000 population) of people using permanent residential aged care, both for those appraised and not appraised as requiring palliative care.
Figure AC 1.3: This interactive data visualisation shows the number and rate (per 100,000 population) of people using permanent residential aged care by assessment for requiring palliative care and by states and territories, in 2021–22. New South Wales had the highest number of people using permanent residential aged care, both for those appraised and not appraised as requiring palliative care. While Tasmania had the highest rate (per 100,000 population) of people using permanent residential aged care for those appraised as requiring palliative care and South Australia had the highest rate (per 100,000 population) for those not appraised as requiring palliative care.
Figure AC 1.4: The interactive data visualisation shows the proportion of ten most common principal diagnoses for all diseases, cancers, and mental health and behavioural diagnosis of people using permanent residential aged care by assessment for requiring palliative care in 2021–22. Cancers and circulatory system conditions had the highest proportions for those appraised as requiring palliative care, whereas musculoskeletal conditions and circulatory system conditions had the highest proportion for those not appraised as requiring palliative care. The most common cancer for permanent aged care residents appraised as requiring palliative care was lung cancer and the most common cancer for those not appraised as requiring palliative care was prostate cancer. The most common mental and behavioural diagnosis was Dementia and Alzheimer’s disease for permanent aged care residents, both for those appraised and not appraised as requiring palliative care.
How long did people stay and how was care completed?
In 2021–22, among people using PRAC with an ACFI appraisal indicating need for palliative care:
- 1 in 2 (50%) exited PRAC within 8 weeks of admission (including 30% within 4 weeks), 69% within one year, and 22% after 2 years. For those not appraised as requiring palliative care, 2 in 3 (67%) exited after 1 year – 31% within 1–3 years and 36% after 3 years, while 7.9% exited within 8 weeks (Figure AC.2).
The shorter stays for people appraised as requiring palliative care are consistent with the purpose of the funding for palliative care under ACFI that is provided specifically for ‘end-of-life’ care (see ‘Aged care service provision and context for interpreting residential aged care data’ above for further details).
In 2021–22:
- Death was the most common reason for exit from PRAC – 95% and 85% of exits for those appraised as requiring palliative care and for those not appraised as requiring palliative care, respectively. Further, return to the community and to other residential care was far more common among those not appraised as requiring palliative care (3.7% and 7.8% of exits, respectively) than those appraised as requiring palliative care (0.6% and 2.2% of exits, respectively; see Figure AC.2).
- Over 1 in 4 people in PRAC required hospital leave from PRAC – 29% and 27%, respectively for those appraised as requiring palliative care and for those not appraised as requiring palliative care (see Table AC.5).
Figure AC.2: Exits from permanent residential aged care, 2020–21
Figure AC 2.1: This bar graph shows proportion of exits from permanent residential aged care, by length of stay and assessment for requiring palliative care in 2021–22. Exits within 1 year was the highest among permanent aged care residents appraised as requiring palliative care, while permanent aged care residents not appraised as requiring palliative care had the highest proportion of exits after 1 year.
Figure AC 2.2: This bar graph shows the proportion of people leaving permanent residential aged care, by reason for leaving and assessment for requiring palliative care in 2021–22. Death was the most common reason for people leaving permanent residential aged care among permanent aged care residents, both for those appraised and not appraised as requiring palliative care.
Have there been changes over time?
Overall, the number of people appraised as requiring palliative care using PRAC in 2021–22 was relatively similar to 2017–18, driven by large annual fluctuations over the preceding 5 years, as shown in Figure AC.3. In contrast, the number of people using PRAC not appraised as requiring palliative care generally increased slightly each year (2% increase overall between 2017–18 and 2021–22).
The number of new admissions to PRAC appraised as requiring palliative care also experienced some fluctuations over this period, but overall declined by 11% between 2017–18 and 2021–22. This rate of decline was steeper than for those not appraised as requiring palliative care (overall decline of 3.7% over this same period).
Between 2019–20 and 2020–21, there was a decline in the number of people and new admissions to PRAC for people assessed as requiring palliative care (by 3.4% and 5.0%, respectively), and a subsequent increase in the following 12 months (by 6.8% and 1.6%, respectively).
These patterns likely reflect the introduction and easing of public health measures introduced to manage the spread of the COVID-19 pandemic during 2020 and 2022. In particular, the various falls in new admissions and rises in exists coincided with lockdowns and the tightening and easing of restrictions in response to the waves of the COVID-19 and new strains of the coronavirus. For example, compared with corresponding months in 2018–19, the number of new admissions to PRAC for people assessed as requiring palliative care fell by 19% in May 2020, 25% in October 2020, 21% in October 2021 and 17% in January 2022 but increased by 20% in March 2022 – similar to the patterns observed for new admissions to PRAC for people not assessed as needing palliative care. Exits from PRAC for those appraised as requiring palliative care also followed a similar pattern – 28% higher in April 2020, 22% higher in May 2020, and 15–18% higher in September 2020, May 2021, September 2021, December 2021, and May 2022 (compared with corresponding months in 2018–19). This report did not explore the reasons for these PRAC exits (such as death or to another setting).
These fluctuations in new admissions and exists may reflect a number of factors that not related to the COVID-19 pandemic (see 2022 edition of this report for further details on the impacts of COVID pandemic). Further, ACFI reviews were undertaken from the Department of Health's offices since 2020 to minimise COVID19 transmission risks (DoH 2020).
Figure AC.3: Trend in new admissions, exits and people using permanent residential aged care, 2017–18 to 2021–22
Figure AC 3.1: This interactive data visualisation shows new admissions, exits, and people using permanent residential aged care, by assessment for requiring palliative care for each year from 2017–18 to 2021–22. The number of new admissions, exits and people appraised as requiring palliative care had fluctuated over this period, with a dip in 2018–19 and 2020–21. The number of people using permanent residential aged care not appraised as requiring palliative care remained relatively stable over the same period, while the number of new admissions and exits for these people remained stable with a slight decrease each year between 2017–18 and 2020–21 and then increased between 2020–21 and 2021–22.
Figure AC 3.2: This interactive data visualisation shows new admissions and exits for people using permanent residential aged care, by assessment for requiring palliative care for each month from July 2018 to June 2022. The number of new admissions and exits fluctuated for permanent aged care residents, both for those appraised and not appraised as requiring palliative care over this period.
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.
| Key Concept | Description |
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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. During the ACFI appraisal process, information is recorded on up to 3 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 conditions only – first listed mental and behavioural disorder and first listed other medical condition. |
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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. |
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Hospital leave |
A short-term stay in hospital of at least one night, which does not involve permanent discharge from permanent residential aged care. |
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Palliative care in permanent residential aged care |
In this report, palliative care in permanent residential aged care (PRAC) is based on Aged Care Funding Instrument (ACFI) appraisals. 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, and where ongoing care will involve very intense clinical nursing and/or complex pain management in the residential care setting. |
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Permanent admission |
An admission to a permanent residential aged care service. This captures both new entries and transfers between services. |
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Permanent |
A person who is receiving long-term care in a permanent residential aged care (PRAC) service. |