Palliative care services in Australia

Bettering the Evaluation and Care of Health survey

The Bettering the Evaluation and Care of Health (BEACH) survey of general practice activity was undertaken annually by the Family Medicine Research Centre at the University of Sydney between 1998 and 2016. For each year’s data collection, a random sample of about 1,000 General Practitioners (GPs) each reported details of 100 consecutive GP encounters of all types on structured encounter forms. Each form collected information about the consultations (for example, date and type of consultation), the patient (for example, date of birth, sex, and reasons for encounter), the problems managed and the management of each problem (for example, treatment provided, prescriptions and referrals). Data on patient risk factors, health status and GP characteristics were also collected.

Additional information on the 2015–16 BEACH survey can be obtained from General practice activity in Australia 2015–16 (Britt et al. 2016). The BEACH survey was run for the last time in 2015–16.

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 (Department of Health 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 (Department of Health 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 (Department of Health 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 (Department of Health 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.

Population data

The majority of the population rates in this publication are crude rates, based on the Australian estimated resident population for the relevant analysis year. The population data were sourced from the ABS and the most up to date estimates available at the time of analysis were used.

To derive estimates of the resident population, the ABS uses the 5-yearly Census of Population and Housing data as follows:

• all respondents to the Census are coded in relation to their state or territory, statistical local area and postcode of usual residence; overseas visitors are excluded,
• an adjustment is made for persons missed in the Census (approximately 2%),
• Australians temporarily overseas on Census night are added to the usual residence Census count.

The resulting numbers provide an estimate of the resident population in the Census year. In the following years, the Census numbers are adjusted by taking into account indicators of population change, such as births, deaths and net migration. More information on the process used to derive population estimates is available from the ABS website.

For the Indigenous rates presented in this website, ‘Series B’ of the projected Indigenous experimental resident population estimates for 30 June 2011, as released by the ABS, was used (ABS 2022).

References

ABS (Australian Bureau of Statistics) (2022) Estimates of Aboriginal and Torres Strait Islander Australians, ABS, Australian Government, accessed 27 January 2023.

Britt H, Miller GC, Henderson J, Bayram C, Harrison C, Valenti L et al. (2016) General practice activity in Australia 2015–16, Sydney University Press, Sydney.

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