Palliative care services in Australia

The Australian Government subsidises residential aged care services for older Australians whose care needs are such that they can no longer remain in their own homes. Residential aged care services provide accommodation and services to people who require ongoing health and nursing care due to chronic impairments and a reduced degree of independence in activities of daily living. They provide nursing, supervision or other types of personal care required by the residents.

Data downloads

Palliative care in residential aged care tables 2017–18 (679KB XLS)

Palliative care in residential aged care section 2017–18 (304KB)

The information in this section was last updated in May 2019.

Key points

The provision of palliative care in residential aged care, facilities is complex. Permanent residents often have dementia and/or communication difficulties and complex care needs (AIHW 2018). In addition, there is a high burden of chronic disease and comorbidity in the residential aged care population (Hillen, Vitry & Caughey 2017).

Palliative care provided in a residential aged care service is regulated under the Aged Care Act 1997, within the Quality of Care Principles. Under the schedule of specified care and services, an Approved Provider is responsible for providing access to a qualified practitioner from a palliative care team, and the establishment of a palliative care program including monitoring and managing any side effects for any resident that needs it. In addition, under Schedule 2 – Aged Care Quality Accreditation Standards, an Approved Provider is responsible for ensuring the comfort and dignity of terminally ill care recipients is maintained.

The AIHW’s National Aged Care Data Clearinghouse contains information gathered via a number of data collections. Data collected from the Aged Care Funding Instrument (ACFI), which is used to determine the level of Australian Government care subsidies for permanent residents, has been used for the analyses presented here. 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 section. Note that an ACFI appraisal is not a comprehensive assessment package. Comprehensive assessment considers a broader range of care needs than is required in the ACFI. 

The total number of care recipients in residential aged care requiring palliative care would be higher than the numbers contained in this report. In practice, it is possible to receive palliative care in residential aged care facilities without having received an ACFI assessment indicating the need for end of life palliative care. Also note that the data available to the AIHW cannot confirm the extent or nature of palliative care actually provided for those who were assessed and funded for palliative care under the ACFI.

Characteristics of residential aged care residents needing palliative care

There were 242,027 permanent residential aged care residents in Australia in 2017–18, and about 1 in 50 of these residents (4,793; 2.0%) had an ACFI appraisal indicating the need for end of life palliative care.

The age profile of permanent residents who required palliative care and of other residents (those not appraised as requiring palliative care) during 2017–18 was very similar. For example, about 60% of both groups were aged 85 and older and about one–quarter were aged 75–84. For (permanent admissions) during 2017–18 who were appraised as requiring palliative care, a smaller proportion were in the 85 and older age group (compared with permanent residents appraised as requiring palliative care (Figure AC.1)). For all other age groups, the proportion of permanent admissions was higher, indicating the slightly younger age of admissions compared with permanent residents where palliative care is required.

Figure AC.1 Alternative text - Source data: Palliative care in residential aged care tables (679KB XLS).

In 2017–18, a higher proportion of male permanent aged care residents were appraised as requiring palliative care compared with females (2.7% and 1.6% respectively). The proportion of Indigenous permanent aged care residents appraised as requiring palliative care was lower than that for other Australians (1.8% and 2.0% respectively).

Geographical distribution of palliative care in residential aged care

The majority of permanent aged care residents in 2017–18 lived in Major cities, with those appraised as requiring palliative care (60.8%) representing a lower proportion than other residents (69.8%) (Figure AC.2). The population rate of requiring palliative care among permanent residents was highest for those in Inner regional areas (33.9 per 100,000 population) followed by Outer regional(18.3) and Major cities (16.5). The rate of other care among other residents (i.e. those permanent residents not appraised as requiring palliative care through their ACFI appraisal) was also highest in Inner regional (1,184.7) areas, followed by Major cities (937.3) and Outer regional areas (889.5).

Figure AC.2 Alternative text - Source data: Palliative care in residential aged care tables (679KB XLS).

Diagnoses

Almost 3 in 10 (27.6%) permanent residents assessed as requiring palliative care in 2017­–18 had been diagnosed with cancer. Differences are apparent in the distribution of cancer diagnosis in terms of type of care provided. Among aged care residents who were diagnosed with cancer and who were also assessed as requiring palliative care, the most common cancer diagnoses were lung cancer (17.7%) and colorectal (bowel) cancer (15.3%). Among care residents not appraised as requiring palliative care, the most common cancer diagnoses were prostate cancer (18.9%) and colorectal (bowel) cancer (17.1%).

The non-cancer disease categories most often recorded among aged care residents requiring palliative care were circulatory system disease (26.1%) and musculoskeletal disease (14.2%). The distribution of non-cancer diseases did not differ greatly across care type, except for musculoskeletal disease, which was observed more frequently among residents not appraised as requiring palliative care (23.1%).

Some information on mental and behavioural disorders is also reported through the ACFI. About 2 in 5 (41.6%) residential aged care residents assessed as requiring palliative care in 2017–18 were diagnosed with dementia (including Alzheimer’s disease) compared with half (49.8%) of those not assessed as requiring palliative care. More than one quarter of all ACFI assessed residents were diagnosed with depression, other mood and affective disorders or bipolar disorder (27.5% for those appraised as requiring palliative care and 25.5% for other residents). Delirium was also more common among those assessed as requiring palliative care (3.8%) than others (1.3%).

It should be noted that identifying mental health conditions in older people may be difficult. For example, illnesses such as dementia and depression are often under-diagnosed and under-treated in residential aged care and in the community. In addition, many mental health conditions share similar symptoms, which can present additional challenges in making a diagnosis. Further information is available from the AIHW publications Dementia in Australia and Depression in residential aged care 2008–2012.

Diseases such as dementia may have a number of related behavioural and psychological symptoms including psychosis, agitation, and aggression. Such symptoms provide additional challenges in providing care to residential aged care residents (NSW Ministry of Health 2013).

Separation mode

A separation from residential aged care occurs when a permanent resident stops receiving residential aged care from a particular facility. The reasons for separation (called the separation mode) indicate the destination of a resident at separation and are categorised as:

• death
• admission to hospital (note that a separation is not counted where the resident is granted ‘hospital leave’)

• return to community (such as to family or home)
• move to another residential aged care facility
• other.

Unsurprisingly, death was the mode of separation for the majority of residents, whether or not they received palliative care (97.8% for those appraised as requiring palliative care and 84.3% for other residents). Consistent with these findings, those permanent residents assessed as requiring  palliative care were less likely than others to have a mode of separation of going to hospital (1.1% and 1.6% respectively), returning to the community (0.4% and 3.9%), or moving to another residential aged care facility (0.5% and 8.5%).

Length of stay

Among those permanent residents who separated from a residential aged care facility during 2017–18, those appraised as requiring palliative care were more likely to have a shorter length of stay than other residents. For permanent residents with a length of stay of less than 8 weeks, the proportion appraised as requiring palliative care during 2017–18 was 6 times greater than for other permanent residents (52.8% and 8.7% respectively) (Figure AC.3).

Figure AC.3 Alternative text - Source data: Palliative care in residential aged care tables (679KB XLS).

Hospital leave

A permanent resident may require ‘hospital leave’ (a temporary stay in hospital which does not involve permanent discharge from aged care) in order to receive treatment in hospital. In 2017–18, the proportion of permanent residents assessed as requiring palliative care having an episode of hospital leave (29.2%) was similar to other residents (30.2%).

Residential aged care residents and admissions over time

The number of aged care residents and admissions appraised as requiring palliative care trended downwards from 2013–14 to 2016–17, but rose from 2016–17 to 2017–18 (Figure AC.4). Overall, the number of residents appraised by approved providers as requiring ACFI funding for end of life palliative care decreased from 11,152 to 4,793 and admissions from 5,046 to 3,024 between 2013–14 and 2017–18. The number of residents and admissions not assessed as requiring palliative care increased over the same period. There have not been any changes to the requirements of the ACFI User Guide since it was introduced in 2008 with regard to palliative care (DoH 2016 ). However, the overall decrease in residential aged care permanent admissions and residents appraised as requiring palliative care is most likely related to changes in the application of the ACFI in recent years, rather than a change in the underlying need for palliative care.

Figure AC.4 Alternative text - Source data: Palliative care in residential aged care tables (679KB XLS).

References

AIHW (Australian Institute of Health and Welfare) 2018. GEN aged care data: People’s care needs in aged care. Canberra: AIHW. Viewed 18 February 2019.

DoH (Department of Health) 2016. Aged Care Funding Instrument; user guide. Canberra: DoH.

Hillen JB, Vitry A & Caughey GE 2017. Disease burden, comorbidity and geriatric syndromes in the Australian aged care population. Australasian Journal of Ageing 36(2):E14-E9.

NSW Ministry of Health 2013. Assessment and Management of People with Behavioural and Psychological Symptoms of Dementia (BPSD). Sydney: NSW Ministry of Health.

Alternative text for Palliative care in residential aged care

Figure AC.1

Vertical bar chart showing the per cent of permanent residents and permanent admissions appraised as requiring palliative care, respectively, by age group: <65 3.0, 3.3; 65–69 3.3, 3.7; 70–74 6.1, 7.0; 75–79 9.8, 11.6; 80–84 16.5, 19.3; 85+ 61.2, 55.0. Refer to Table AC.5 and AC.6. Back to figure AC.1

Figure AC.2

Vertical bar chart showing the per cent of permanent residents by palliative care status (palliative care and other respectively) and remoteness area: Major cities 60.8, 69.8; Inner regional 31.0, 21.9; Outer regional 7.8, 7.7; Remote 0.3, 0.5; Very remote 0.1, 0.1. Refer to Table AC.7. Back to figure AC.2

Figure AC.3

Vertical bar chart showing the per cent of permanent residents by palliative care status (palliative care and other respectively), by length of stay. <8 weeks 52.8, 8.7; 8–<26 weeks 11.2, 13.6; 26–<52 weeks 7.5, 12.1; 1–<2 years 9.8, 17.7; 2+ years 18.7, 48.0. Refer to Table AC.13. Back to figure AC.3

Figure AC.4

Line chart showing the number of residential aged care permanent residents and admissions, respectively, appraised as requiring palliative care over time. 2013–14 11,152, 5,046; 2014–15 8,781, 3,716; 2015–16 6,316, 3,255; 2016–17 4,509, 2,811; 2017–18 4,793, 3,024. Refer to Table AC.15. Back to figure AC.4