Palliative care services in Australia

Palliative care for people living in residential aged care

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.

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This section was last updated in May 2021.

The provision of palliative care in residential aged care is complex. People often have dementia and/or complex care needs (AIHW 2019). 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 covered by 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 health practitioner and specialised therapy services, including from a palliative care team, and the establishment of a palliative care program including monitoring and managing any side effects for any person that needs it. In addition, under Schedule 2 – Aged Care Quality Standards, an Approved Provider is responsible for ensuring the comfort and dignity of terminally ill people is maintained. The data used in this report relate to palliative care as recorded in the ACFI assessment (see Box AC.1).

Box AC.1 Context for interpreting palliative care data from the Aged Care Funding Instrument

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 palliative care in their last year of life before dying in residential aged care (AIHW, unpublished).

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.

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

Characteristics of people living in residential aged care who are appraised as needing palliative care

There were 244,327 people in permanent residential aged care (PRAC) in Australia in 2019–20, and of these, 3,178 (1.3%) had an ACFI appraisal indicating the need for palliative care (see Table AC.1). There were 69,500 admissions to PRAC in 2019–20, of which 2,847 people (4.1%) had an ACFI appraisal indicating the need for palliative care.

In 2019–20, of people living in PRAC requiring palliative care, similar proportions were male (51.1% or 1,625) and female (48.9% or 1,553). However, as a proportion of all people in PRAC, males were almost twice as likely to be appraised as requiring palliative care than females (1.9% and 1.0%, respectively; see Table AC.7).

The age profile was similar for PRAC residents who required palliative care and for people not appraised as requiring palliative care through their ACFI appraisal (other care) during 2019–20 (see Table AC.5). For both groups the number of people increased with increasing age — from less than 10% for those aged under 70 to just over half of people aged 85 years and over. Among those appraised as requiring palliative care, a smaller proportion were aged 85 years and over compared with those not appraised as requiring palliative care (54.8% and 60.9%, respectively). The age distribution of people admitted during 2019–20 to PRAC was similar to that for existing residents (see Table AC.6), although people not appraised as requiring palliative care had a smaller proportion in the 85 and over age group (55.1%), which was comparable to people admitted and appraised as requiring palliative care (54.2%).

The age profile of PRAC residents (permanent residents) appraised as requiring palliative care in 2019–20 differed slightly by sex (Figure AC.1; Table AC.5), with a higher proportion of females aged 85 years and over compared with males (59.1% and 50.6%, respectively). This pattern was also consistent among people who were admitted to PRAC (permanent admissions) during 2019–20 aged 85 years and over (57.3% and 51.4%, respectively) (see Table AC.6).

The proportion of Aboriginal and Torres Strait Islander People who were living in PRAC appraised as requiring palliative care was similar to that for other Australians (1.2% and 1.3% respectively), noting that Indigenous people only made up 1% of the total number of people living in PRAC (Table AC.7).

Source data: Palliative care in residential aged care Table AC.5

Geographical distribution of palliative care in residential aged care

In 2019–20, the population rate of PRAC residents requiring palliative care was 12.5 per 100,000 for Australia overall (see Table AC.10). Considering population size in each state and territory, Tasmania had the highest population rate (27.7 per 100,000 population) and the Northern Territory had the lowest rate (1.2 per 100,000 population). New South Wales had the highest proportion of PRAC residents appraised as requiring palliative care (34.7% of the national total), followed by Victoria (28%; see Table AC.7).

The majority (69.9%) of people living in PRAC in 2019–20 lived in Major cities (see Table AC.7). PRAC residents who lived in Major cities represented 63.3% of those who required palliative care, and 70.0% of patients who were not appraised as requiring palliative care (Figure AC.2). The population rate of people requiring palliative care among those who live in PRAC was highest for those in Inner regional areas (19.4 per 100,000 population) followed by Outer regional (13.6), Major cities (11.0), and Remote areas (4.8; see Table AC.8). The rate of care among people receiving other care was also highest in Inner regional (1,174.5) areas, followed by Major cities (920.9) and Outer regional areas (888.4).

Source data: Palliative care in residential aged care Table AC.7

Diagnoses

Almost 3 in 10 (27.4%) people living in PRAC assessed as requiring palliative care in 2019–20 had been diagnosed with cancer compared with 3.6% of people living in PRAC not appraised as requiring palliative care (see Table AC.3). Conditions recorded on the ACFI are not necessarily related to palliative care status. However, differences were apparent in the distribution of cancer diagnosis by ACFI palliative care status (see Table AC.12). Among people living in PRAC who were diagnosed with cancer and who were also assessed as requiring palliative care, the most common cancer diagnoses were lung cancer (17.8%) and prostate cancer (13.7%). Among people living in PRAC not appraised as requiring palliative care, the most common cancer diagnoses were prostate cancer (19.1%) and colorectal (bowel) cancer (16.6%).

The non-cancer disease categories most often recorded among people living in PRAC requiring palliative care were diseases of the circulatory system (29.8%) and musculoskeletal diseases (11.1%). The proportion of people living in PRAC with circulatory system diseases requiring palliative care was 1.5 times as high as those not appraised as requiring palliative care (29.8% vs 20.0%) and the proportion of people with musculoskeletal diseases requiring palliative care was half that of people not appraised as requiring palliative care (11.1% versus 22.8%).

Some information on mental and behavioural conditions is also reported on the ACFI. About 1 in 3 (35.9%) people living in PRAC assessed as requiring palliative care in 2019–20 were diagnosed with dementia (including Alzheimer’s disease) compared with half (50.1%) of those not assessed as requiring palliative care. Around 1 in 4 of all people living in PRAC were diagnosed with depression, other mood and affective disorders or bipolar disorder (29.5% for those requiring palliative care and 26.6% for people with other care). Delirium was 2.7 times as high among those assessed as requiring palliative care (4.9%) than other care (1.8%).

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 2012) 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 Box AC.1 for further details).

People leaving residential aged care

A separation from PRAC represents the end of an episode of care, and occurs when a person who is a permanent resident stops receiving care from a particular PRAC service. The reasons for separation indicate the destination of the person at separation and are categorised as:

• death
• admission to hospital (note that a separation is not counted where the person is on hospital leave)
• return to community (such as to family or home)
• move to another residential aged care facility
• other.

The most common reason for both palliative care-related separations and other care-related separations was death (94.4% for palliative care and 83.2% for other care; see Table AC.4). Palliative care-related separations were less likely to occur than other care-related separations due to returning to the community (0.7% and 4.0%, respectively) or moving to another PRAC service (2.6% and 8.6%). A similar proportion of palliative care-related separations and other care-related separations occurred due to admission to hospital (1.5% and 1.6% respectively).

Length of stay

Among all PRAC separations in 2019–20, palliative care-related separations were more likely to be shorter in length of stay than other care-related separations. The proportion of palliative care-related separations with a length of stay of less than 8 weeks was nearly 6 times that of other care-related separations (52.1% and 9.0% respectively) (Figure AC.3).

Source data: Palliative care in residential aged care Table AC.13

Hospital leave

A person who lives in PRAC may require hospital leave (a temporary overnight stay in hospital which does not involve permanent discharge from aged care) in order to receive treatment in hospital. In 2019–20, a slightly lower proportion of people living in PRAC requiring palliative care had an episode of hospital leave (25.0%) compared with people with other care (29.8%). Further details can be seen in Table AC.14.

Residential aged care residents and admissions over time

The number of people living in PRAC appraised as requiring palliative care has decreased over the 5 years to 2019–20, while little change has been observed for all people admitted to PRAC (see Table AC.15). Overall, the number of people living in PRAC (permanent residents) appraised as requiring palliative care decreased from 6,316 to 3,178, while the total number of people admitted to PRAC (permanent admissions) decreased slightly from 3,255 to 2,847 between 2015–16 and 2019–20 (Figure AC.4). The number of people living in PRAC receiving other care has increased gradually over the last 5 years, from 228,800 in 2015-16 to 241,149 in 2019-20, while people admitted to PRAC for other care decreased slightly over the 5 year period, from 68,871 in 2015-16 to 66,653 in 2019-20.

These declines in palliative care admissions are unlikely to be due to the need for palliative care, but rather may reflect the application of the ACFI in recent years (see Box AC.1 and Inquiry Report, Section 3; Productivity Commission, 2017). In 2020, ACFI reviews were undertaken remotely to minimise COVID­­­­­-19 transmission risks (DoH 2020).

Source data: Palliative care in residential aged care Table AC.15

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 (94.3% of people living in PRAC), and/or who are immunocompromised due to conditions such as cancer and other chronic diseases (DoH, 2021a). As of April 2021, 3 in 4 (74.6%) Australian COVID-19-related deaths occurred in people living in PRAC (DoH 2021b, DoH 2021c).

This section explores admissions to and separations from PRAC on a monthly basis over the last 2 years (2018–19 and 2019–20), including palliative care-related episodes of care. This analysis may provide insights on the impact of the COVID-19 pandemic on palliative care in the PRAC setting. It should be noted that these data only extend to June 2020, and fluctuations in admissions and separations could reflect a number of factors that may or may not be related to the COVID-19 pandemic.

Admissions to residential aged care

In the 2 years from July 2018 to June 2020 (see Figure AC.5), the lowest number of admissions to PRAC was recorded in May 2020, for both palliative care-related admissions (178 admissions) and other admissions (4,610 admissions). This represented a 21.6% decrease in total admissions compared to May 2019 (6,105 in May 2019 compared to 4,788 in May 2020).

In the months leading up to May in 2020, the number of palliative care-related admissions were slightly higher from January to April 2020 compared to the same months in 2019. In particular, the months of March and April in 2020 had a slightly higher number of palliative care admissions as a proportion of total monthly admissions compared to the same months in 2019 (3.4% for March and April in 2019 compared to 4.0% in March and 4.2% in April 2020). See Table AC.16 for further detail.  

Source data: Palliative care in residential aged care Table AC.16

Separations from residential aged care

The number of palliative care-related separations were slightly higher across all included months in 2020 (January to June), compared to the same months in 2019 (see Figure AC.6). The greatest differences occurred in April and May, with a 28.2% increase in April 2020 (298 separations in April 2019, 382 in April 2020) and 21.9% increase in May 2020 (324 in May 2019, 395 in May 2020) compared with these months in 2019. This was in contrast to a reduction in the number of other (non-palliative care-related) separations, in which a 10.3% reduction occurred in May 2020 (5,707 in 2019 versus 5,117 in 2020) and an 11.7% reduction in June 2020 (5,727 in 2019 versus 5,058 in 2020), compared to these months in 2019 (see Figure AC.6). This may reflect a reduction in non-palliative care residents moving between, or leaving, facilities during COVID-19 pandemic lockdowns. The most common reason for palliative care-related separations was death in both 2018–19 and 2019–20 (more than 91% for all months from July 2018 to June 2020).

Source data: Palliative care in residential aged care Table AC.16