Australian Institute of Health and Welfare (2022) Palliative care services in Australia, AIHW, Australian Government, accessed 03 December 2022.
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
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
Australian Institute of Health and Welfare. Palliative care services in Australia [Internet]. Canberra: Australian Institute of Health and Welfare, 2022 [cited 2022 Dec. 3]. Available from: https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia
Australian Institute of Health and Welfare (AIHW) 2022, Palliative care services in Australia, viewed 3 December 2022, https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia
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The technical information section contains information on data presentation calculation methodologies, data sources and codes and classifications used in compiling the data for Palliative care services.
This section describes the classification systems referenced in Palliative care services in Australia.
The Australian Statistical Geographical Standard for Remoteness Areas (ASGS) was developed by the Australian Bureau of Statistics (ABS) to collect and disseminate geographically classified statistics (ABS 2011; ABS, 2016).
The ASGS’s remoteness structure categorises geographical areas in Australia into remoteness areas:
The ABS website includes detailed information, including the differences between ASGS 2011 and ASGS 2016.
Data on remoteness of geographical location in the NHMD are collected based on patients’ usual residential address and in the NPHED, this is determined by hospital street address. Data on remoteness were defined using the ABS ASGS remoteness structure 2011 (ABS 2011) until 2016-17 and the ASGS remoteness structure 2016 (ABS 2016) from 2017-18 onwards. Further information on the quality of the usual residence of the patient data in the NHMD can be found in Appendix B of Admitted patient care 2018-19.
The IRSD is 1 of 4 Socio-Economic Indexes for Areas (SEIFA) developed by the ABS (ABS 2018). The IRSD represents the socioeconomic position of Australian communities by measuring aspects of disadvantage, such as low income, low educational attainment, high unemployment, and jobs in relatively unskilled occupations. Areas are then ranked according to their level of disadvantage.
When the IRSD is used in this report, people living in the 20% of areas with the greatest overall level of disadvantage are described as living in the ‘lowest socioeconomic areas’. The 20% of people at the other end of the scale—those living in areas with the least overall level of disadvantage—are described as living in the ‘highest socioeconomic areas’.
It is important to note that the IRSD reflects the overall or average socioeconomic position of the population of an area; it does not show how individuals living in the same area might differ from each other in their socioeconomic position.
The IRSAD is 1 of 4 Socio-Economic Indexes for Areas (SEIFA) developed by the ABS (ABS 2013) and updated in 2016 (ABS 2018). The IRSAD represents the socioeconomic position of Australian communities by measuring aspect of advantage, such as households with high incomes or people in skilled occupations, and disadvantage, such as households with low incomes and people in unskilled occupations.
The IRSAD provides a measure of socioeconomic status by dividing the Australian population into quintiles based on the area in which they live; the 1st IRSAD quintile represents the 20% of Australian geographical areas experiencing greater socioeconomic disadvantage and a lack of advantage in general, while the 5th IRSAD quintile represents the areas experiencing a relative lack of disadvantage and greater advantage in general (ABS 2013).
Similar to the IRSD mentioned in the previous subsection, it is important to note that the IRSAD reflects the overall or average socioeconomic position of the population of an area; it does not show how individuals living in the same area might differ from each other in their socioeconomic position.
The International Statistical Classification of Diseases and Related Health Problems (ICD), which was developed by the WHO, is the international standard for coding morbidity and mortality statistics. It was designed to promote international comparability in collecting, processing, classifying and presenting these statistics. The ICD is periodically reviewed to reflect changes in clinical and research settings (WHO 2021).
The version currently used in Australia to code causes of death, ICD-10 (WHO 1992), was endorsed in May 1990 and officially came into use in WHO member states from 1994. The 11th revision of the ICD was released in June 2018. Member States will begin reporting health data using ICD-11 in 2022. Further information on the ICD is available from the WHO website
Diagnosis, procedure and external cause hospital data for 2018–19 were reported to the NHMD by all states and territories using the 10th edition of the Australian Modification of ICD-10, referred to as the ICD-10-AM. ICD-10-AM, is based on ICD-10 (NCCH 2013). ICD-10 was modified for the Australian setting by the National Centre for Classification in Health (NCCH) to make it more relevant to Australian clinical practice. Compatibility with ICD-10 at the higher levels (that is, up to 4 character codes) of the classification has been maintained. ICD-10-AM has been used to classify diagnoses in admitted patient hospital records in all Australian states and territories since 1999–00 (AIHW 2000).
The ICD-10-AM disease classification is hierarchical; a small number of summary disease chapters are divided into a large number of more specific disease groupings (represented by 3-character codes). Most of the 3-character disease groupings can be divided into an even larger number of very specific disease categories represented by 4 and 5 character codes (see Table 1 in the Technical notes).
ABS (Australian Bureau of Statistics) 2018. Census of Population and Housing: Socio-Economic Indexes for Areas (SEIFA), Australia, 2016. ABS cat. no. 2033.0.55.001. Canberra: ABS.
ABS 2016. Australian Statistical Geography Standard (ASGS): Volume 1—Main Structure and Greater Capital City Statistical Areas. ABS cat. no. 1270.0.55.001. Canberra: ABS.
ABS 2013. Census of Population and Housing: Socio-Economic Indexes for Areas (SEIFA), Australia, 2011. ABS cat. no. 2033.0.55.001 Canberra: ABS.
ABS 2011. Australian Statistical Geography Standard (ASGS): Volume 1—Main Structure and Greater City Statistical Areas. ABS cat. no. 1270.0.55.001. Canberra: ABS.
AIHW (Australian Institute of Health and Welfare) 2000. Australian hospital statistics 1998–99. Health services series no. 15. Cat. no. HSE 11. Canberra: AIHW.
AIHW 2020. Admitted Patients. Canberra: AIHW. Viewed 11 February 2021.
NCCH (National Centre for Classifications in Health) 2013. International Statistical Classification of Diseases and Related Health Problems, 10th revision, Australian Modification, eighth edition. Sydney: NCCH.
WHO (World Health Organization) 1992. International Statistical Classification of Diseases and Related Health Problems, tenth revision. Vol. 1. Geneva: WHO.
WHO 2021. International Classification of Diseases (ICD). Geneva: WHO. Viewed 11 February 2021.
The 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 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.
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:
ACFI appraisals include:
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.
The Workforce Surveys are administered to all health practitioners registered by the Australian Health Practitioner Regulation Agency (AHPRA) and are included as part of the registration renewal process. The workforce surveys are voluntary. The respective surveys are used to provide nationally consistent workforce estimates. They provide data not readily available from other sources, such as on the type of work done by, and job setting of, health practitioners; the number of hours worked in a clinical or non-clinical role, and in total; and the number of years worked in, and intended to remain in, the health workforce. The survey also provides information on those registered health practitioners who are not undertaking clinical work or who are not employed. The information from the workforce surveys, combined with some National Registration and Accreditation Scheme (NRAS) registration data items, comprises the NHWDS.
Past and present surveys have different collection and estimation methodologies, questionnaire designs and response rates. As a result, care should be taken in comparing historical data from the AIHW Medical Labour Force Surveys prior to 2010 with data from the NHWDS.
Health workforce data are available for public access through the Department of Health’s Health Workforce Data Tool (HWDT) and the numbers in this publication reflect those extracted using the HWDT as at 1 July 2022. In the case of medical specialists, the numbers are those employed whose primary specialty is palliative medicine. For nurses, the numbers are those employed whose principal job area as a nurse is palliative care. There may be differences between the data presented here and that published elsewhere due to different calculation or estimation methodologies or extraction dates. The HWDT uses a randomisation technique to confidentialise small numbers. This can result in differences between the column sum and total and small variations in numbers from one data extract to another.
The palliative care workforce is made up of a broad range of professional groups, each playing a unique role in supporting people with a life limiting illness to receive comprehensive, patient-centred care. It is recognised that general practitioners, other medical specialists, social workers, occupational therapists, physiotherapists, and other allied health professionals form an integral part of the palliative care workforce. However, existing national data sources are not able to accurately capture the extent of palliative care services provided by these health professionals. See the Palliative care workforce section for further details.
Further information regarding the Medical practitioner workforce and Nursing and midwifery workforce surveys is available at Department of Health workforce surveys.
Data on admitted patient palliative care are sourced from the NHMD. These data pertain to admitted patients in public and private hospitals in Australia. Some of these hospitals have hospices affiliated with them.
The NHMD includes administrative data, demographic information on patients, and clinical information including diagnoses and procedures performed. This annual collection is compiled and maintained by the AIHW, using data supplied by state and territory health authorities. Information from almost all hospitals in Australia is included in the database: from public acute and public psychiatric hospitals, private acute and psychiatric hospitals, and from private free-standing day hospital facilities (Appendix A, AIHW 2020). The latest available data at the date of publication of this report was 2019–20.
The NHMD is episode based, with the term ‘hospitalisation’ used to refer to an episode of admitted patient care; individual patients may have multiple hospitalisations ending in discharge, transfer or statistical discharge with a change in care type and ultimately death. Each record in the NHMD is based on a single episode of treatment for an admitted patient, with such episodes classified in the ‘Care type’ data item as Acute care, Palliative care, Rehabilitation care, Newborn and other types of care. When a patient receives only one type of care during a hospital stay (such as only Acute care or only Palliative care), the length of stay for that hospitalisation is equal to the total length of time the patient spent in hospital during that stay.
However, where patients receive different types of care during one hospital stay (for example, a person may be admitted for active cancer treatment but then later reclassified as a palliative care patient), the patient may be statistically discharged from the hospital after the first type of care and then statistically readmitted into a second phase of care. Thus, a single patient may have two or more hospitalisations during any one hospital stay. Since each record within the NHMD is based on an episode of care, the hospitalisation count is a count of episodes, not persons. In cases of more than one care type, length of stay refers to the length of the episode of care, not the total duration of the patient’s hospital stay.
For each of the years considered in this report, the coverage of the NHMD has been very good. For example, in 2018–19, coverage for the NHMD was high – data from all public hospitals were included. Most private hospitals also provided data, the exceptions being the private free-standing day hospital facilities and two overnight private hospitals in the Australian Capital Territory. Note that the data for private hospitals in Tasmania, the Australian Capital Territory and the Northern Territory were not published for confidentiality reasons. However, it should be noted that there are no confidentiality concerns about the Tasmanian private hospital data, and that Tasmania would support the release of their private hospital information.
Hospitals may be re-categorised as public or private between or within years (see AIHW 2020 for further information). This should be considered when comparing data by sector over time.
Data on state/territory of hospitalisation should be interpreted with caution because of cross-border flows of patients. This is particularly the case for the Australian Capital Territory. In 2018–19, 17% of hospitalisations in the Australian Capital Territory were for patients who lived in New South Wales.
The AIHW Indigenous identification in hospital separations data: quality report assessed the quality of Indigenous identification in Australian public hospitalisations. The results of this study indicated that data for all jurisdictions should be used in any analyses of Indigenous hospitalisation rates and that the ‘true’ number of Indigenous persons was close to 9% higher than the number indicated in hospital records (AIHW 2013). This should be considered when interpreting the hospital data by Indigenous status. Note, no adjustment has been applied to the Indigenous counts in the hospital data in this report.
Standard admitted patient care data exclusions
As per the standard AIHW practice when analysing admitted patient data in the NHMD, the data presented in this report exclude those records for which the ‘Care type’ data item was reported as newborn (unqualified days only), hospital boarder or organ procurement (posthumous).
Comprehensive hospital statistics from the NHMD are released by the AIHW on an annual basis in Admitted Patients and further information about the NHMD can be obtained from those publications. Metadata information for the Admitted Patient Care and Local Hospital Networks/Public Hospital Establishments national minimum data sets (NMDSs), that are the basis for the AIHW National Hospital Databases, are published in the AIHW’s online metadata registry – METEOR, and the National Health Data Dictionary.
From 1 July 2013, care types have been reported using revised definitions, with the aim to improve consistency in reporting for the subacute and non-acute care types. Therefore, changes in the care type definitions should be considered when interpreting changes over time.
A complete data quality statement for the NHMD database is available online.
The NPHED holds establishment-level data for each public hospital in Australia, including public acute hospitals, psychiatric hospitals, drug and alcohol hospitals, and dental hospitals in all states and territories. The collection covers hospitals within the jurisdiction of the state and territory health authorities only. Hence, public hospitals not administered by the state and territory health authorities (hospitals operated by the Australian Government Department of Health, Department of Defence or correctional authorities, for example, and hospitals located in offshore territories) are not included. The collection does not include data for private hospitals.
For 2019–20, the collection was based on the Local Hospital Networks/Public Hospital Establishments national minimum data set (LHN/PHE NMDS). Information is included on a hospital’s resources, expenditure, average available bed numbers, peer group, and the statistical local area and remoteness area of its location. For more information on the data collection method and other relevant data issues, refer to the 2019–20 NPHED data quality statement.
The PCOC is a national program using standardised validated clinical assessment tools to benchmark and measure outcomes in palliative care. The PCOC data set includes the following clinical assessment tools: Palliative Care Phase, Palliative Care Problem Severity Score (PCPSS), Symptom Assessment Scale (SAS), Australia-modified Karnofsky Performance Status (AKPS), and Resource Utilisation Groups – Activities of Daily Living (RUG-ADL) which provide measures of quality and outcomes of care. The PCOC aims to assist services to improve the quality of the palliative care it provides through the analysis and benchmarking of patient outcomes.
Participation in PCOC is voluntary and contribution to the collection is sought from all palliative care service providers in public and private health sectors, across all regions, and across inpatient and community settings. However, not all services participate in PCOC. The data presented in this section therefore describes a subset of all palliative care delivered in Australia. For more information refer to the section on Palliative care outcomes.
Data using Version 1 of the PCOC data set were collected between January 2006 and January 2007. Version 2 of the data set was enacted from July 2007, and Version 3 was implemented in July 2012 (PCOC 2012).
The national figures used in this website reflect all palliative care services that submitted data for the January–December 2021 period. A full list of these services can be found at the Palliative care outcomes collaboration website.
The majority of the population rates in this publication are crude rates, based on the Australian estimated resident population for the relevant analysis year. Age-standardised rates are calculated for Indigenous data due to the differing age distribution of the Indigenous compared to the general population. 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:
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 2014).
Submitting cause of death data to the relevant state and territory Registrar of Births, Deaths and Marriages has been compulsory in Australia since the mid-1850s. Since 1906, the Commonwealth Statistician has compiled the information collected by these Registrars and published national death information. The information on deaths from the Registrars is coded nationally by the ABS according to rules set forward in various versions of the International Classification of Diseases (ICD). In the ABS deaths data, information is available in terms of the year in which a person died and the year in which the death was registered.
In the section on admitted patient palliative care, ABS deaths data on the total number of Australian deaths that occurred during the specified financial years are shown (ABS 2017). These mortality data were based on the year of death as this aligns with the information on deaths of admitted patients as reported in the NHMD.
Services Australia (formerly the Australian Government Department of Human Services) collects data on the activity of all persons making claims through the MBS and provides this information to the Australian Government Department of Health. Information collected includes the type of service provided (MBS item number) and the benefit paid by Services Australia for the service. The item number and benefits paid by Services Australia are based on the Medicare Benefits Schedule Book (DoH 2020). Services that are not included in the MBS are not included in the data.
MBS group and subgroup
MBS item number
Palliative medicine attendances
Attendance in a hospital or surgery, initial brief video conference
Attendance in a hospital or surgery, initial visit
Attendance in a hospital or surgery, subsequent visit, minor, after initial attendance
Attendance in a hospital or surgery, subsequent visit, other
Attendance in a hospital or surgery, video conference
Initial home (not at hospital or surgery) visit
Subsequent home (not at hospital or surgery) visit
Subsequent home (not at hospital or surgery) visit, minor
Palliative medicine case conferences
Organise and coordinate a community case conference 15–<30 minutes
Organise and coordinate a community case conference 30–<45 minutes
Organise and coordinate a community case conference >=45 minutes
Participate in a community case conference 15–<30 minutes
Participate in a community case conference 30–<45 minutes
Participate in a community case conference >=45 minutes
Organise and coordinate a discharge case conference 15–<30 minutes
Organise and coordinate a discharge case conference 30–<45 minutes
Organise and coordinate a discharge case conference >=45 minutes
Participate in a discharge case conference 15–<30 minutes
Participate in a discharge case conference 30–<45 minutes
Participate in a discharge case conference >=45 minutes
Note: Refer to the Medicare Benefits Schedule Book (MBS) Jul 2020 edition for full item descriptions (pages 309-313) and further information relating to MBS Palliative care (pages 109-110).
The MBS data presented in this website relate to services provided on a fee-for-service basis for which MBS benefits were paid. The year is determined from the date the service was processed by Services Australia, rather than the date the service was provided. The state or territory is determined according to the postcode of the patient’s mailing address at the last date of service for each patient within the reference period. In some cases, this will not be the same as the postcode of the patient’s residential address. Age and sex are determined from the last date of service within the reference period and attributed to all service claims reported for that individual.
During the COVID-19 pandemic, the Australian Government expanded MBS-subsidised telehealth service to allow Australians to access health services from their home or place of care, and help limit the potential exposure of patients and health practitioners to the virus. This includes 6 new temporary MBS items (91824, 91825, 91826, 91834, 91835 and 91836) which could be used by pain and palliative medicine specialists to provide telehealth services, either by videoconference or by telephone, as a substitution for existing face to face MBS consultation services (Department of Health, 2020). These were not coded separately for palliative care specialists and thus were not able to be included in the data presented here.
Previously, the Palliative care services in Australia report has defined types of palliative-care related medicines by categories based on the ATC classification system (see the World Health Organization Collaborating Centre for Drug Statistics methodology for further information on the ATC classification system; WHO 2018).
For the 2022 Palliative care services in Australia report, the method of reporting types of palliative care related prescriptions has been updated, with new categories developed based on the Palliative Care publication of the Australian Therapeutic Guidelines (Therapeutic Guidelines Limited 2021). These categories represent a clinically-meaningful grouping of palliative care symptoms that are often managed with medications listed on the PBS/RPBS Palliative Care Schedule.
The 5 medication groups are:
Table 1 lists the medication items from the Palliative Care Schedule with their corresponding medication groups and ATC codes at levels 2, 3 and 5. The items listed are those dispensed from the Palliative Care Schedule during the specific years included in this report (2016–17 to 2020–21).
Note, that the medication types (at the ATC level 2) in previous editions of this report are not directly comparable with the ‘medication group’ presented in this report.
Note that most of these medicines are listed in multiple areas of the Schedule of Pharmaceutical Benefits and are not specific to the Palliative Care Schedule. Data extracted using the ATC codes for the Palliative care services in Australia report for medication groups was filtered by program type (Palliative Care Schedule) to report on all palliative care-related prescriptions.
ATC level 2
ATC level 3
ATC level 5
Antiinflammatory and antirheumatic products
Antiinflammatory and antirheumatic products, non-steroids
Morphine (excluding PBS items 11760Y and 11761B)
Oxycodone + Naloxone*
Other analgesics and antipyretics
Drugs for functional gastrointestinal disorders
Belladonna and derivatives, plain
Hyoscine butylbromide (aka butylscopolamine)**
Drugs for constipation
Rhamnus frangula + sterculia
Macrogol - 3350
Macrogol-3350 + sodium chloride + bicarbonate + potassium chloride
Citric acid + lauryl sulfoacetate sodium + sorbitol
Respiratory symptoms (Chronic breathlessness)
Morphine (PBS items 11760Y and 11761B only)***
Hypnotics and sedatives
* These medicines are included in the report, noting that they were first listed on the PBS Palliative Care Schedule on 1 June 2021 and therefore only include prescriptions for 1 month (to 30 June 2021).
** Hyoscine butylbromide can also be used to manage respiratory secretions.
*** These PBS items are listed on the PBS as Restricted Benefit which can only be prescribed for specific therapeutic uses.
PBS/RPBS data do not capture the following:
For demographic tables, patient characteristics are determined at a single point in each year, ensuring each person is only counted once in the year.
State and territory are determined according to the patient’s residential postcode as recorded on the Consumer Directory. If the patient’s state or territory is unknown, then the state or territory of the pharmacy supplying the item is reported.
All data are presented by the date of supply, that is, when the prescription was dispensed to the patient.
Reporting of subsidised and under co-payment prescription data
Until 1 April 2012, PBS and RPBS prescription data supplied to the AIHW by the Department of Health excluded prescriptions costing less than the patient co-payment amount (under co-payment). From 1 April 2012, changes to the National Health Act 1953 required pharmacies to supply data for prescriptions that are priced below the patient co-payment level to Services Australia, formerly Department of Human Services (DoH 2011). Under co-payment prescription data were then supplied in PBS/RPBS Palliative Care datasets and were incorporated in the same tables as subsidised prescription data, but were often reported separately. In the Palliative care services in Australia 2022 report (including 2016–17 to 2020–21 PBS/RPBS data), under co-payment and subsidised data are now combined in most tables. An additional table by patient beneficiaries shows the palliative care data by co-payment type in a single table for 2020–21 (Table PBS.4.), rather than including this split in every table.
Changes to restriction levels on the Palliative Care Scheme
On 1 June 2016, as part of the Post-market Review of Authority Required PBS Listings, changes were made to items listed on the Palliative Care Schedule. The restrictions for a number of Palliative Care Schedule items were changed and some medications were added or deleted. The restriction level of certain Palliative Care Schedule items, specifically those in the ‘pain relief’ and ‘gastrointestinal symptoms’ categories, were changed, in many cases from ‘Authority Required (STREAMLINED)’ to ‘Restricted Benefit’, reducing the level of restriction. Certain versions of medications were delisted due to initial and continuing treatment restrictions being simplified and merged under a single item code. Prescriptions written prior to 1 June 2016 for deleted item codes remained valid for a 12-month transition period. Some pain relief items were also added, specifically buprenorphine, resulting in an increase in prescriptions in this category.
Due to these changes, data presented in this report from 2016–17 onwards are not comparable with previous years. These changes particularly affect medications in this report that come under the ‘pain relief’ and ‘gastrointestinal symptoms’ categories.
ABS (Australian Bureau of Statistics) (2011) Australian Statistical Geographical Standard (ASGS): Volume 1—Main structure and greater capital city statistical areas, July 2011. ABS cat. no. 1270.0.55.001. Canberra: ABS.
ABS (2014) Experimental estimates and projections, Aboriginal and Torres Strait Islander Australians, 2001 to 2026. ABS cat. no. 3238.0. Canberra: ABS.
ABS (2017) Deaths, Australia 2016: data cubes. ABS cat. no. 3302.0. Canberra: ABS.
AIHW (Australian Institute of Health and Welfare) (2013) Indigenous identification in hospital separations data: quality report. Cat. no. IHW 90. Canberra: AIHW.
AIHW (2017a) AIHW analysis of National Health Workforce Data Set 2016 (unpublished). Canberra: AIHW.
AIHW (2017b) Admitted patient care 2015–16: Australian hospital statistics. Health services series no.75. Cat. no. HSE 185. Canberra: AIHW.
AIHW (2020) Admitted patients. Canberra: AIHW. Viewed 11 February 2021.
Britt H, Miller GC, Henderson J, Bayram C, Valenti L, Wong C et al. 2015. General practice activity in Australia 2014–15. General practice series no. 38. Sydney: Sydney University Press.
DoH (Department of Health) (2016) Aged Care Funding Instrument: User Guide. Canberra: DoH.
DoH (2018) Medicare Benefits Schedule Book, effective 1 December 2018. Canberra: Department of Health.
DoH (2019) About the PBS. Viewed 21 Feb 2019.
DoH (Department of Health) (2020), Medicare Benefits Schedule Book, Operating from 21 July 2020, Canberra: Department of Health, accessed 29 March 2022.
DoH (2021) The Pharmaceutical Benefits Scheme. 4. Patient Charges, Department of Health, Australian Government, accessed 27 May 2021.
PCOC (Palliative Care Outcomes Collaboration)2012. PCOC Version 3.0 Dataset: data dictionary and technical guidelines. Wollongong: University of Wollongong. Viewed 13 May 2016.
Therapeutic Guidelines Limited (2021) Therapeutic Guidelines: Palliative Care, Therapeutic Guidelines Limited, accessed 30 July 2021.
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This section describes the process followed for identifying palliative care hospitalisations in the National Hospital Morbidity Database (NHMD).
The admitted patient palliative care section in this report describes and quantifies admitted patient hospitalisations for which palliative care was provided. Two NHMD data items—‘Care type’ and ‘Diagnosis’— capture information indicating palliative care has been provided to a patient. The AIHW has previously explored how these two data items can be used to identify palliative care hospitalisations in Identifying palliative care separations in admitted patient data: technical paper (AIHW 2011).
A care type is assigned for each admitted patient hospitalisation and describes the overall nature of a clinical service provided to the patient. Only one type of care can be assigned at a time. Where the primary clinical purpose or treatment goal for the patient changes, the change in care type leads to a statistical discharge and a corresponding statistical admission. This means that a person can have multiple hospitalisations recorded for a single stay in hospital.
Prior to 1 July 2013, the Palliative care care type was defined as:
‘care in which the clinical intent or treatment goal is primarily quality of life for a patient with an active, progressive disease with little or no prospect of cure. It is usually evidenced by an interdisciplinary assessment and/or management of the physical, psychological, emotional and spiritual needs of the patient; and a grief and bereavement support service for the patient and their carers/family’.
It includes care provided:
From 1 July 2013, the Palliative care care type was defined as:
‘care in which the primary clinical purpose or treatment goal is optimisation of the quality of life of a patient with an active and advanced life-limiting illness. The patient will have complex physical, psychosocial and/or spiritual needs’.
Palliative care is always:
Changes in the care type definitions for Palliative care should be considered when interpreting changes over time. The impact of these changes is likely to be minimal given the data included in this report is from 1 July 2014 onwards.
In addition to the information on the provision of palliative care collected via the care type data item, information on palliative care is also recorded in the NHMD under the diagnosis data items. In Australian hospitals, a principal diagnosis is assigned during each hospitalisation. One or more additional diagnoses may also be assigned. The principal diagnosis is ‘the diagnosis established after study to be chiefly responsible for occasioning the patient’s episode of admitted patient care’ (Appendix B, AIHW 2020; ACCD 2016). An additional diagnosis is ‘a condition or complaint that either co-exists with the principal diagnosis or arises during the episode of care’. Such diagnoses provide information on the conditions that are significant in terms of treatment required, investigations needed and resources used during the episode of care (Appendix B, AIHW 2020; ACCD 2016).
The classification used nationally to assign diagnosis codes is the ICD-10-AM (see Classifications). The specific ICD-10-AM edition used has been updated across the 5-year timespan, with the ninth edition used for 2016–17 data, the tenth edition used for 2017–18 and 2018–19 data and the eleventh edition used for 2019–20 data. Further details about each edition, including the differences between editions, can be found here. One of the codes in the classification—Z51.5—is Palliative care. While diagnosis codes usually describe a condition such as a disease, injury or poisoning, they can also be used in certain instances to indicate the specific care or service provided for a current condition or other reasons for hospitalisation (AIHW 2020). This is the case when Palliative care during a hospitalisation is recorded using a diagnosis code.
Starting with the 9th edition of the ICD-10-AM, a specific ICD-10-AM coding standard—standard ‘2116’—was applied to the recording of Palliative care as a diagnosis (ACCD 2015). The classification instruction clarified that Z51.5 Palliative care should only be assigned where there is documented evidence that the patient has been provided with palliative care and that it may be assigned independent of the admitted patient care type. A new standard was created in the 9th edition to highlight ICD-10-AM codes that should never be assigned as a principal diagnosis (i.e. should be assigned as an additional diagnosis only) and this list includes Z51.5 Palliative care (ACCD 2015). This impacts the Admitted Patient Care National Minimum Data Set from 2015–16 onwards. However, if Z51.5 is reported as a principal diagnosis, the hospitalisation is still counted in this reporting.
In 2019–20, there were about 86,900 hospitalisations identified as providing some form of palliative care, regardless of the care type assigned. These hospitalisations are identified by either the assignment of the ICD-10-AM principal or additional diagnosis code of Palliative care (Z51.5), or by the assignment of the Palliative care type (or both).
From 2015–16, there was a notable increase of hospitalisations with an additional diagnosis code of Palliative care, while hospitalisations assigned with a care type of Palliative care appeared to increase in a more stable fashion when compared with previous years. This change coincided with the aforementioned change in the ICD-10-AM coding standard for palliative care that explicitly stated: ‘Palliative care may be assigned independent of the admitted patient care type’. Therefore, the historical data should be interpreted with caution when interpreting changes over time.
There are evident jurisdictional differences in the level of congruence between the coding of care type and diagnosis items for palliative care patients. For all states and territories, there were some episodes that had only a palliative care type or a palliative care diagnosis code (AIHW 2020). For more information on identifying palliative care hospitalisations, refer to Identifying palliative care separations in admitted patient data: technical paper (AIHW 2011).
From 2020 onwards, the statistics presented in Palliative Care Services in Australia distinguish between hospitalisations with a Palliative care care type, and those with only a Palliative care diagnosis (Z51.5). Prior to 2020, only the total of these was reported to show the widest possible view of the palliative care related activity within admitted patient care. However, this made it difficult to identify specialist palliative care, and thus difficult to reconcile data reported in Palliative Care Services in Australia with other palliative care data, such as the Palliative Care Outcomes Collaboration (PCOC) data reported in the Palliative care outcomes section of this report.
Where a diagnosis of Z51.5 is recorded, but not a Palliative care care type, these hospitalisations are described as “Other end-of-life care”. This approach captures hospitalisations for which a component of the care was considered palliative, but the primary clinical purpose was not recorded for the patient to receive palliative care. The use of the term “other end-of-life-care” refers to the broader palliative care definition, and is not limited to end of life care (generally defined as people who are likely to die within the next 12 months).
At its March 2011 meeting, the Australian Health Ministers Advisory Committee’s (AHMAC) Palliative Care Working Group endorsed the use of both care type and diagnosis information to identify those hospitalisations for which palliative care was a component of the care provided. At its November 2019 meeting, AHMAC’s new Palliative Care and End of Life Care Data Development Working Group endorsed the change to separately report ‘Palliative care’ related hospitalisations and ‘Other end-of-life care’ hospitalisations.
ACCD (Australian Consortium for Classification Development) 2015. The International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Australian Modification (ICD-10-AM)—9th edn.—tabular list of diseases, and Alphabetic index of diseases. Adelaide: Independent Hospital Pricing Authority.
ACCD 2016. The International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Australian Modification (ICD-10-AM)—10th edn.—and the Australian Classification of Health Interventions (ACHI)—10th edn. —tabular list of diseases, and Alphabetic index of diseases. Adelaide: Independent Hospital Pricing Authority.
AIHW (Australian Institute of Health and Welfare) 2011. Identifying palliative care separations in admitted patient data: technical paper. Cat. no. HWI 113. Canberra: AIHW.
This technical notes section describes data presentation calculation methodologies.
Population rates were calculated using the ABS estimated resident population (ERP) at the midpoint of the data range (for example, rates for 2018–19 data were calculated using ERP at 31 December 2018, while rates for the 2019 calendar year data were calculated using ERP at 30 June 2019). Rates for Indigenous status, socio-economic indexes for areas (SEIFA) and remoteness area data were calculated using ERP at 30 June of the relevant year.
Age-specific rates provide information on the incidence of a particular event in a specified age group relative to the total number of people ‘at risk’ of that event in the same age group. It is calculated by dividing the number of events occurring in each specified age group by the corresponding population in the same group, and then multiplying the result by a constant (for example, 10,000) to derive the rate.
Where age-specific rates are reported in the Admitted patient palliative care section; they are expressed per 10,000 persons and were based on ABS population estimates as at 31 December 2018, for example.
A crude rate provides information on the number of events (for example, palliative care hospitalisations) relative to the population ‘at risk’ (for example, the entire population) in a specified period. No age adjustments are made when calculating such a rate and crude rates are used throughout this publication. Note that owing to the differences in approaches used to calculate population rates for different analyses, the rates shown throughout this report for Australia (sometimes labelled as the ‘Total’) may differ slightly from one analysis to another.
Average annual rates of change or growth rates have been calculated as geometric rates:
Average rate of change
((Pn/Po)(1/n –1)) x 100
value in the later time period
value in the earlier time period
number of years between the two time periods.
Information presented in Palliative care services in Australia is based on descriptive statistics. When examining results it should be considered that patterns of relationship between variables may be influenced by known and unknown confounding factors. Furthermore, relationships between variables do not necessarily reflect underlying causal links.
Information on the number of hospitalisations due to a particular disease, including cancer and other specific diseases (see below), is based on the principal diagnosis, such that the number of hospitalisations for which a certain disease was coded as the principal diagnosis is counted. The principal diagnosis is ‘the diagnosis established after study to be chiefly responsible for occasioning the patient’s episode of admitted patient care’ (Appendix B, AIHW 2020a; ACCD 2016).
The ICD-10-AM diagnosis codes used in the Admitted patient care section to identify patients with cancer mirrors the approach used in AIHW’s Cancer in Australia 2019 report (see Appendix E in AIHW 2019). This approach takes into account that, for some cancer-related hospitalisations, the treatment relating to the patient’s cancer (such as chemotherapy or the insertion of a drug delivery device) is recorded as the principal diagnosis, rather than the specific form of cancer the person had, as per ICD-10-AM coding standards (NCCH 2010). Thus, two different criteria are used to identify those hospitalisations with a principal diagnosis of cancer; these are summarised below.
Hospitalisations that met one of the following criteria were considered to have a principal diagnosis of cancer.
Source: AIHW 2019.
Information relating to other specific diseases
Some diagnoses for palliative care patients are shown at a specific disease level. The best way to group ICD-10-AM codes to identify some diseases (such as heart failure, stroke and chronic obstructive pulmonary disease) is not always straightforward, as different approaches are used in the literature. From 2020, groupings similar to those used in AIHW’s reporting on leading causes of death (AIHW 2020b) have been used, with some variations. A full list is shown in Table 1 below.
Intestinal infectious diseases
A20, A44, A75–A79, A82–A84, A85.2, A90–A96, A98.0, A98.1, A98.2, A98.8, B50–B57
Vector-borne diseases and rabies
Certain zoonotic bacterial diseases excl. plague
A30–A49 excl. A33–A37, A39, A40–A41, A44
Other bacterial diseases excl. vaccine-preventable diseases, meningitis, septicaemia
A33–A37, A80, B01, B05, B06, B15, B16, B17.0, B18.0, B18.1, B18.9, B19, B26
Infections with predominantly sexual mode of transmission
Other spirochaetal diseases
Other diseases caused by chlamydia
A80–A89 excl. A80, A82–A84, A85.2
Viral infections of the central nervous system excl. vaccine-preventable diseases, vector-borne diseases and rabies
A98.3, A98.4, A98.5, A99
Unspecified and selected other viral haemorrhagic fevers
B00–B09 excl. B01, B05, B06
Viral infections with skin and mucous membrane lesions excl. vaccine-preventable diseases
B15–B19 excl. B15, B16, B17.0, B18.0, B18.1, B18.9, B19
Viral hepatitis excl. vaccine-preventable diseases
Human immunodeficiency virus (HIV) disease
B25–B34 excl. B26
Other viral diseases excl. mumps
B50–B64 excl. B50–B57
Protozoal diseases excl. vector-borne diseases
Pediculosis, acariasis and other infestations
Sequelae of infectious and parasitic diseases
Bacterial, viral and other infectious agents
Other infectious diseases
Malignant neoplasms of lip, oral cavity and pharynx
Malignant neoplasm of small intestine
C26, C39, C76–C80 excl. C26.0
Cancer of unknown or ill-defined primary site
C30, C31, C35–C38
Selected malignant neoplasms of respiratory and intrathoracic organs
Malignant neoplasms of bone and articular cartilage
Melanoma of the skin
Other malignant neoplasms of skin
Malignant neoplasms of mesothelial and soft tissue
C51, C52, C57, C58
Malignant neoplasms of vulva, vagina, other female genital organs, placenta
C60, C62, C63
Malignant neoplasms of penis, testis, other male genital organs
C65, C66, C68
Malignant neoplasms of renal pelvis, bladder, other urinary organs
C69, C70, C72
Malignant neoplasms of eye, adnexa, meninges, spinal cord, other parts of the central nervous system
Malignant neoplasms of thyroid and other endocrine glands
Malignant immunoproliferative diseases, multiple myeloma and malignant plasma cell neoplasms
Malignant neoplasms of independent (primary) multiple sites
Benign neoplasms, in situ and uncertain behaviour
Malnutrition and nutritional anaemias
Aplastic and other anaemias
Coagulation defects, purpura and other haemorrhagic conditions
Other diseases of blood and blood-forming organs
Certain disorders involving the immune mechanism
Disorders of thyroid gland
Impaired glucose regulation
Other disorders of glucose regulation and pancreatic internal secretion
Disorders of other endocrine glands
Obesity and other hyperalimentation
E70–E89 excl. E86, E87
Selected metabolic disorders excl. dehydration
Disorders of fluid, electrolyte and acid-based balance (dehydration)
F01, F03, G30
Dementia and Alzheimer disease
Organic mental disorders excl. dementia
Mental and behavioural disorders due to psychoactive substance use
Schizophrenia, schizotypal and delusional disorders
Mood (affective) disorders
Neurotic, stress-related and somatoform disorders
Behavioural syndromes associated with physiological disturbances and physical factors
Disorders of adult personality and behaviour
Disorders of psychological development
Behavioural and emotional disorders with onset usually occurring in childhood and adolescence
Unspecified mental disorder
Inflammatory diseases of the central nervous system excl. meningitis
G10, G11, G13
Huntington disease and hereditary ataxia
Spinal muscular atrophy and related syndromes
Extrapyramidal and movement disorders excl. Parkinson disease
Other degenerative diseases of nervous system excl. Alzheimer disease
Demyelinating diseases of the central nervous system
Epilepsy and status epilepticus
Episodic and paroxysmal disorders excl. epilepsy
Nerve, nerve root and plexus disorders
Polyneuropathies and other disorders of the peripheral nervous system
Diseases of myoneural junction and muscle
Cerebral palsy and other paralytic syndromes
Other disorders of the nervous system
Diseases of the eye and adnexa
Diseases of the ear and mastoid process
Acute rheumatic fever
Chronic rheumatic heart disease
Coronary heart disease
Pulmonary heart disease and diseases of pulmonary circulation
I30–I33, I39–I41, I43–I45, I52
Selected other forms of heart disease
Non-rheumatic valve disorders
Heart failure and complications and ill-defined heart disease
Aortic aneurysm and dissection
Diseases of arteries, arterioles and capillaries excl. atherosclerosis, aortic aneurysm and dissection
Diseases of veins, lymphatic vessels and lymph nodes, not elsewhere classified
Other and unspecified disorders of the circulatory system
Acute respiratory diseases excl. influenza and pneumonia
Influenza and pneumonia
Other diseases of upper respiratory tract
Chronic obstructive pulmonary disease (COPD)
Lung diseases due to external agents
Pulmonary oedema and other interstitial pulmonary diseases
Suppurative and necrotic conditions of lower respiratory tract
Other diseases of pleura
J95–J99 excl. J96
Other diseases of the respiratory system
Chronic respiratory failure
Diseases of oral cavity, salivary glands and jaws
Diseases of oesophagus, stomach and duodenum
Appendicitis, hernia and intestinal obstruction
Non-infective enteritis and colitis
Other diseases of intestines excl. paralytic ileus and intestinal obstruction without hernia
Diseases of peritoneum
Disorders of gallbladder, biliary tract and pancreas
Other diseases of the digestive system
Infections of the skin and subcutaneous tissue
Dermatitis and eczema
Urticaria and erythema
Radiation-related disorders of the skin and subcutaneous tissue
Disorders of skin appendages
Other disorders of the skin and subcutaneous tissue
Diseases of the musculoskeletal system and connective tissue
Renal tubulo-interstitial disease
Other kidney or ureter disorders
Other urinary disorders
Diseases of male genital organs
Disorders of breast
Inflammatory diseases of female pelvic organs
Non-inflammatory disorders of female genital tract
Other disorders of genitourinary tract
Pregnancy, childbirth and the puerperium
Certain conditions originating in the perinatal period, congenital malformations, deformations and chromosomal abnormalities
Other ill-defined causes
Sudden infant death syndrome (SIDS)
Injuries to specific parts of the body
Injuries to multiple body regions, crushing, asphyxiation, poisoning by drugs, other
Land transport accidents
Water transport accidents
Air and space transport accidents
Other and unspecified transport accidents
W20–W49 excl. W32–W34
Exposure to inanimate mechanical forces excl. firearms
Non-intentional firearm discharge
Exposure to animate mechanical forces
Accidental drowning and submersion
Accidental threats to breathing
Exposure to electric current, radiation and extreme ambient air temperature and pressure
Exposure to smoke, fire and flames
Contact with heat and hot substances
Contact with venomous animals and plants
Exposure to forces of nature
Overexertion, travel and privation
Exposure to other specified factors
Exposure to unspecified factor
Event of undetermined intent
Legal intervention and operations of war
Drugs, medicaments and biological substances causing adverse effects in therapeutic use
Misadventures to patients during surgical and medical care
Medical devices associated with misadventures in diagnostic and therapeutic use
Surgical and other medical procedures as the cause of abnormal reaction of the patient, or of later complication, without mention of misadventure at the time of the procedure
Sequelae of external causes of morbidity and mortality
Supplementary factors related to causes of morbidity and mortality classified elsewhere
Factors influencing health status and contact with health services
Patient day statistics can be used to provide information on hospital activity that, unlike hospitalisation statistics, accounts for differences in length of stay. As the NHMD contains records for patients ceasing hospitalisation during a specific reporting period (such as 1 July 2018 to 30 June 2019), this means that all patients who ceased hospitalisation during the reporting period are included, regardless of whether or not they were admitted during that period. Thus, not all patient days reported will have occurred during the reporting period. However, it is expected that, in general, patient days for patients who ceased hospitalisation in 2018–19, but who were admitted before 1 July 2018, will be generally counterbalanced by the patient days for patients still in hospital on 30 June 2019 who will cease hospitalisation in future reporting periods.
The AIHW Indigenous identification in hospital separations data: quality report (AIHW 2013) reported on the quality of Indigenous identification in Australian public hospital separations data, based on studies of Indigenous identification in public hospitals conducted during 2011 and 2012. A number of important findings were identified. The results of the included studies indicated that data for all jurisdictions should be used in any analyses of Indigenous hospitalisation rates, and that all states and territories are included in national analyses of Indigenous admitted patient care. Additionally, as noted in the Data Sources section - National Hospital Morbidity Database (NHMD), findings of the report indicated that the ‘true’ number of Indigenous persons was close to 9% higher than the number indicated in hospital records. Note, no adjustment has been applied to the Indigenous counts in the hospital data in this publication.
ACCD (Australian Consortium for Classification Development) 2016. The International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Australian Modification (ICD-10-AM)—10th edn.—and the Australian Classification of Health Interventions (ACHI)—10th edn. —tabular list of diseases, and Alphabetic index of diseases. Adelaide: Independent Hospital Pricing Authority.
AIHW (Australian Institute of Health and Welfare) 2013. Indigenous identification in hospital separations data: quality report. Cat. no. IHW 90. Canberra: AIHW.
AIHW 2019. Cancer in Australia 2019. Cancer series no. 119. Cat. no. CAN 123. Canberra: AIHW.
AIHW 2020a. Admitted Patient care 2018-19 Appendixes. Canberra: AIHW. Viewed 11 February 2021.
AIHW 2020b. Deaths in Australia. Cat. no. PHE 229. Canberra: AIHW. Viewed 11 February 2021.
NCCH (National Centre for Classification in Health) 2010. Australian coding standards for ICD-10-AM and ACHI, seventh edition. Sydney: NCCH.
WHO (World Health Organization) 1992. International Statistical Classification of Diseases and Related Health Problems, 10th revision. Vol. 1. Geneva: WHO.
WHO 2000. International Classification of Diseases for Oncology, third edition. Geneva: WHO.
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