Palliative care services in Australia

This section describes the classification systems referenced in Palliative care services in Australia.

Australian Statistical Geographical Standard for Remoteness Areas

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; ABS 2021).

The ASGS’s remoteness structure categorises geographical areas in Australia into five remoteness areas:

• Major cities
• Inner regional
• Outer regional
• Remote
• Very remote.

The ABS website includes detailed information on ASGS, including the key changes made between each edition.

Data on remoteness of geographical location in the National Hospital Morbidity Database (NHMD) are collected based on patients’ usual residential address and in the National Public Hospital Establishments Database (NPHED), this is determined by hospital street address. This release provides hospital data on remoteness using 2021–22 NHMD (ASGS 2016 edition). 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 2021–22.

Index of Relative Socio-economic Disadvantage

The Index of Relative Socio-economic Disadvantage (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.

International Statistical Classification of Diseases and Related Health Problems

The International Statistical Classification of Diseases and Related Health Problems (ICD), which was developed by the World Health Organization (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 2022).

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.

ICD-10-AM

Diagnosis, procedure and external cause hospital data for 2021–22 were reported to the NHMD by all states and territories using the 11th 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 1999–2000 (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- character and 5-character codes (see Table 1 in the Technical notes).

References

ABS (Australian Bureau of Statistics) (2011) Australian Statistical Geography Standard (ASGS), Volume 1 – Main Structure and Greater City Statistical Areas. ABS cat. no. 1270.0.55.001. 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 (2018) Census of Population and Housing: Socio-Economic Indexes for Areas (SEIFA), Australia, 2016, ABS cat. no. 2033.0.55.001. Canberra: ABS.

ABS (2021) Australian Statistical Geography Standard (ASGS) Edition 3, ABS Website, accessed 30 March 2023.

AIHW (Australian Institute of Health and Welfare) (2000) Australian hospital statistics 1998–99, AIHW, Australian Government, accessed 29 August 2023.

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 Organisation) (1992) International Statistical Classification of Diseases and Related Health Problems, tenth revision. Vol. 1. Geneva: WHO.

WHO (2022) International Classification of Diseases (ICD), WHO website, accessed 11 February 2023.

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 (DoH 2017).

ACFI appraisals include:

• relevant mental and behavioural diagnoses outlined in the ACFI User Guide Mental and Behavioural disorders Checklist
• up to 3 other medical diagnoses relevant to a resident’s care needs
• 5 questions relating to a resident’s assessed care needs with regard to activities of daily living: nutrition, mobility, personal hygiene, toileting, and continence
• 5 questions relating to a resident’s cognition and behaviour: cognitive skills, wandering, verbal behaviour, physical behaviour, and depression
• 2 questions relating to the need for assistance with the use of medication and ongoing complex health care procedures and activities; with the need for palliative care being covered by these questions (DoH 2017).

Responses to ACFI questions are rated on a scale of A to D and are used to determine the level of care a person needs. While mental health or behavioural diagnoses, along with other medical diagnoses, can be recorded, the ACFI is not designed to be a comprehensive assessment tool.

Note that in this report, only the first listed mental and behavioural diagnoses and first listed other medical diagnosis are included in the analysis.

Note that the ACFI is primarily focused on components of the resident’s care needs that affect the cost of care. Consequently, the capture of information on a person’s care needs, including health conditions and need for assistance with activities of daily living, may be affected by their relevance to the cost of care and the number of available fields on the form.

Funding for palliative care under the ACFI is provided specifically for ‘end-of-life’ care, which takes place during the last days or week of a care recipient’s life (DoH 2017). Permanent residents who have been appraised as requiring palliative care under the ACFI are included in the ‘palliative care’ group described in this report. It should be noted that if a resident is already on the maximum ACFI Complex Health Care claim, services may not claim for palliative care, as it is not possible to increase the subsidy payable in this situation. For more information about the ACFI, refer to the ACFI User Guide (DoH 2017).

The method used to derive the number of permanent aged care residents in this report (any point during the reporting period) differs from the approach used in other reporting, such as through AIHW GEN aged care data (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.

National Health Workforce Data Set

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 National Health Workforce Dataset (NHWDS). 

Past and present surveys have different collection and estimation methodologies, questionnaire designs and response rates. As a result, caution should be taken in comparing historical data from the AIHW Medical Labour Force Surveys prior to 2010 with data from the NHWDS.

Details of medical practitioners, nurses and allied health practitioners registered with the Australian Health Practitioner Regulation Agency (AHPRA) are available for public access through the Department of Health and Aged Care’s Health Workforce Data Tool (HWDT). This report examines medical practitioners and nurses, as these professionals can be identified using the HWDT as specialist palliative care providers. 

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.

The numbers in this report reflect those extracted using the HWDT as of 1 July 2023. Workforce for each profession is defined as those employed in Australia in the profession, who specialise in or work in palliative care. Additionally, an employed health professional is defined in this report as one who: 

• reported (the week before the survey) practising in Australia (including practitioners on leave for less than 3 months), or
• was involved with work that is principally concerned with their health discipline (including non-clinical roles – for example education, research, and administration).

Employed palliative medicine physicians only include practitioners whose main speciality is palliative care. Employed palliative care nurses include only nurses whose principal job area is palliative care. This excludes those practitioners who:

• practice palliative care as a second or third speciality
• are registered in the profession but are retired from regular work
• work outside the profession
• work in the profession but are on extended leave of 3 months or more
• are only engaged in unpaid/volunteer work or 
• work outside Australia.

The full-time equivalent (FTE) is defined in this report as the number of standard-hour workloads worked by employed health professionals. The FTE is calculated by multiplying the number of employed professionals in a specific category by the average total hours worked by employed people in that category and dividing by the number of hours in a standard working week. The standard working week, equivalent to 1 FTE, is based on working 38 hours per week for all practitioners with the exception of medical practitioners, where it is defined as 40 hours. In this report, the FTE for palliative care nurses is therefore based on working 38 hours per week and for palliative medicine physicians 40 hours per week. 

There may be differences between the data presented here and that published elsewhere due to different calculation or estimation methodologies or extraction dates. Additionally, 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.

Further information regarding the medical practitioner workforce and Nursing and midwifery workforce surveys is available from the Department of Health and Aged Care’s Health Workforce data website. 

National Hospital Morbidity Database

Data on admitted patient palliative care are sourced from the National Hospital Morbidity Database (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 2022). The latest available data at the date of publication of this report was 2021–22.

Episode-based data

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 stays.

Coverage

For each of the years considered in this report, the coverage of the NHMD has been very good. For example, in 2021–22, coverage for the NHMD was high – data from all public hospitals were included (AIHW 2022). 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 and all hospitals (public and private combined) in Tasmania, the Australian Capital Territory and the Northern Territory were not published for confidentiality reasons. 

Hospitals may be re-categorised as public or private between or within years (see Local Hospital Networks/ Public hospital establishments National Minimum Data Set (NMDS) 2021–22 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 2021–22, 19% of hospitalisations in the Australian Capital Territory public hospitals were for patients who lived in New South Wales. 

The AIHW Indigenous identification in hospital separations data: quality report assessed the quality of Indigenous status 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 Aboriginal and Torres Strait Islander (First Nations) people 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 counts in the hospital data by Indigenous status 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).

Further information

Comprehensive hospital statistics from the NHMD are released by the AIHW on an annual basis in Admitted patients (AIHW 2023) 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 NMDS, that are the basis for the AIHW National Hospital Databases (AIHW 2022), are published in the AIHW’s online metadata registry (METEOR) – National Hospital Morbidity Database (NHMD), 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 2021–22 database is available online.

National Public Hospital Establishments Database

The National Public Hospital Establishments Database (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 and Aged Care, 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 2021–22, 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 2021–22 NPHED Data quality statement (NPHED 2022).

National Hospital Cost Data Collection

The National Hospital Cost Data Collection (NHCDC) is an annual collection of public hospital cost data in Australia, managed by the Independent Health and Aged Care Pricing Authority (IHACPA), and is the primary data collection used to develop the National Efficient Price (NEP) and National Efficient Cost (NEC) Determinations for the funding of public hospitals services.

IHACPA uses classifications to categorise, cost and price hospital activity. Hospital activity relates to the management of (diagnostics and interventional) and the resources used by the patient in relation to their treatment. Classification systems are used to describe activity related to the following types of patient care: admitted acute care, subacute and non-acute care, non-admitted care, emergency care and mental health care. Palliative care belongs to subacute care, a specialised multidisciplinary care in which the primary need for care is optimisation of the patient’s functioning and quality of life.

The health departments of Australia’s states and territories submit their cost data to IHACPA. Taken together, the collection represents the primary source of information about the cost of treating patients in Australian hospitals. To support consistency in the costing process, IHACPA works with stakeholders to develop and implement national costing standards. The Standards prescribes the set of line items and cost centres used for mapping hospital costs. IHACPA then creates cost buckets as cost pools within the hospital, by combining line items and cost centres. 

The current version of the standards is the Australian Hospital Patient Costing Standards Version 4.1. For more information about data specifications, see IHACPA's Data collection.

Palliative Care Outcomes Collaboration

The Palliative Care Outcomes Collaboration (PCOC) is a national program using standardised validated clinical assessment tools to measure and benchmark patient outcomes in palliative care. 

Participation in the PCOC is voluntary and open to all palliative care service providers across Australia. Representation is sought from public and private health sectors, rural and metropolitan areas, and inpatient and community settings. PCOC aims to assist services to improve the quality of the palliative care they provide through the analysis and benchmarking of patient outcomes. The PCOC model is embedded into routine clinical practice. As such, the standardised clinical assessment tools are used as part of routine practice with each consecutively admitted patient.

The PCOC palliative care outcomes collection dataset (PCOC 2012) includes data on patient demographics, clinical setting information, and patient outcomes from the following PCOC assessment tools (Daveson et al. 2021; PCOC 2012): 

• Palliative Care Phase
• PCOC Symptom Assessment Scale (PCOC SAS)
• Palliative Care Problem Severity Score (PCPSS)
• Australia-modified Karnofsky Performance Status (AKPS) Scale
• Resource Utilisation Groups – Activities of Daily Living (RUG-ADL). 

Data using Version 1 of PCOC dataset were collected between January 2006 and January 2007. Version 2 of the dataset was enacted from July 2007, and Version 3 was implemented in July 2012 (PCOC 2012). More information about this dataset can be found in PCOC Version 3.0 Dataset Data Dictionary and Technical Guidelines under PCOC Research & data Palliative care outcomes collection.

The national information presented in this report reflect all palliative care services that submitted data for the 1 January 2018 to 31 December 2022 period. A full list of the services that contributed data to this report can be found on the Palliative Care Outcomes Collaboration website.

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. 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:

• 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).

Medicare Benefits Schedule data

Services Australia (formerly the Australian Government Department of Human Services) collects administrative data in processing claims for benefits under the Medicare Benefits Schedule (MBS) and provides this information to the Australian Government Department of Health and Aged Care. 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 (DHAC 2022).

Table 1: List of all MBS items that have been defined as palliative medicine attendance and case conference services provided by palliative medicine physicians/specialists

* Items 3003 and 3015 ceased on 31 December 2021, with telehealth services now claimed against relevant item numbers in Group A40.

Note: Refer to the Medicare Benefits Schedule Book (MBS) July 2022 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 report relate to services provided on a ‘fee-for-service’ basis for which MBS benefits were paid. Excluded are details of relevant services to public in-patients or public outpatients of hospitals and services funded from the Department of Veterans’ Affairs National Treatment Account.

In this release, year was determined from the date the service was provided, rather than the date the service was processed by Services Australia. Note that in releases prior to 2022, data were on a financial year of processing basis, while in this report data (2021–22 and trend data) were on a financial year of service basis capturing claims processed up to and including 31 December 2022.

The state or territory was determined according to the postcode of the person’s Medicare enrolment address on the last date of service record for the items in question, within the reference period. In some cases, this will not be the same as the postcode of the person’s residential address. Age and sex were 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, to help limit the potential exposure of patients and health practitioners to the virus. This included 6 new temporary MBS items (91824, 91825, 91826, 91834, 91835 and 91836) which could be used by pain and palliative medicine physicians/specialists to provide telehealth services, either by videoconference or by telephone, as a substitution for existing face to face MBS consultation services (DHAC 2022). Data on these telehealth services and other relevant telehealth items provided by specialists and consultant physicians in palliative medicine were included in this report to provide insights on how palliative care medicine attendance and case conference services provided by palliative care physicians/specialists changed in response to the COVID-19 pandemic.

Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme data

Services Australia (formerly the Australian Government Department of Human Services) collects administrative data in processing prescriptions dispensed under Pharmaceutical Benefits Scheme (PBS) and Repatriation Pharmaceutical Benefits Scheme data (RPBS), and provides these data to the Australian Government Department of Health and Aged Care. Information collected includes age, sex and postcode of the patient, details of the prescribed and dispensed medication (such as where medicines are dispensed – community pharmacies, hospitals, and so on). The PBS/RPBS data, maintained by the Department of Health and Aged Care, has been used as the data source in this section.

Only those medications listed on the Palliative Care Schedule of the PBS, and medications prescribed by palliative medicine specialists, are included in this section; the former are referred to as palliative care-related prescriptions. The number of people provided with these prescriptions, their characteristics, and the prescription costs funded by the PBS and RPBS are also included.

Types of palliative care-related prescriptions

Previously, the Palliative care services in Australia report has defined types of palliative care-related medicines by categories based on the Anatomical Therapeutic Chemical (ATC) classification system (see the World Health Organization Collaborating Centre for Drug Statistics methodology for further information on the ATC classification system; WHO 2022).

Since 2022, the Palliative care services in Australia report has used an updated method of reporting types of palliative care-related prescriptions, with the 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:

• pain relief
• gastrointestinal symptoms
• neurological symptoms
• respiratory symptoms
• psychological symptoms.

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 (2017–18 to 2021–22).

Note that the medication types (at the ATC level 2) in editions of this report before 2022 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.

Table 2. Palliative Care Schedule medicines according to medication group

*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.

Coverage and scope of data source

PBS/RPBS data do not capture the following:

• Over the counter medicines
• Medicines supplied to public hospital inpatients
• Private prescriptions (that is, if a medicine is not listed under the PBS Schedule for a specific indication, but it has market authorisation by the Therapeutic Goods Administration for sale).

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.

Relevant changes to the Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits over time

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 and Aged Care 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 (DoHA 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. Since 2022, the Palliative care services in Australia report (combines under co-payment and subsidised data in most tables. An additional table by patient beneficiaries shows the palliative care data by co-payment type in a single table for 2021–22 (Table PBS.3), 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.

It should also be noted that data from 2016–17 onwards are not comparable with previous years. This is due to significant changes to the PBS restriction level from June 2016, as well as new listings of medications on the PBS Palliative Care Schedule (DoH 2016). These changes particularly affect medications in this report that come under the ‘pain relief’ and ‘gastrointestinal symptoms’ categories. See the Data sources section for further information.

References

ABS (Australian Bureau of Statistics) (2022) Estimates of Aboriginal and Torres Strait Islander Australians. ABS cat. no. 3238.0.55.001. Canberra: ABS.

AIHW (Australian Institute of Health and Welfare) (2013) Indigenous identification in hospital separations data: quality report, AIHW, Australian Government, accessed 28 January 2023.

AIHW (2022a) Admitted patients, AIHW, Australian Government, accessed 17 January 2023.

AIHW (2022b) Admitted patient care NMDS 2020–21, AIHW, Australian Government, accessed 26 January 2023.

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.

DoHA (Department of Health and Ageing) (2011) Pharmaceutical Benefits Scheme Collection of Under Co-payment Data, DoHA, Australian Government, accessed 10 January 2023.

DoH (Department of Health) (2016) Schedule of Pharmaceutical Benefits: Summary of Changes. Effective 1 January 2016, DoH, Australian Government, accessed 10 January 2023.

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

DHAC (Department of Health and Aged Care) (2022) Medicare Benefits Schedule Book, Operating from 1 July 2022, DHAC, Australian Government, accessed 30 January 2023.

NPHED (National Public Hospital Establishments Database) (2021) Hospital resources 2021–22 Appendix information, AIHW, Australian Government, accessed 20 February 2023.

PCOC (Palliative Care Outcomes Collaboration) (2012) PCOC Version 3.0 Dataset Data Dictionary and Technical Guidelines. Wollongong: University of Wollongong.

Therapeutic Guidelines Limited (2021) Therapeutic Guidelines: Palliative Care, Therapeutic Guidelines Limited website, accessed 10 March 2023.

WHO (World Health Organization) (2022) ATC Structure and principles, World Health Organisation website, accessed 18 January 2023.

This section describes the process followed for identifying palliative care-related 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-related hospitalisations in ‘Identifying palliative care separations in admitted patient data: technical paper’ (AIHW 2011).

Coding 'palliative care' as a care type

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 care type of ‘palliative care’ 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:

• in a palliative care unit;
• in a designated palliative care program; or
• under the principal clinical management of a palliative care physician or, in the opinion of the treating doctor, when the principal clinical intent of care is palliation.

From 1 July 2013, the care type of ‘palliative care’ 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:

• delivered under the management of or informed by a clinician with specialised expertise in palliative care, and
• evidenced by an individualised multidisciplinary assessment and management plan, which is documented in the patient's medical record, that covers the physical, psychological, emotional, social and spiritual needs of the patient and negotiated goals.

Palliative care excludes care which meets the definition of mental health care.

Changes in the definitions for the care type of ‘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 2015 onwards.

Coding 'palliative care' as a diagnosis

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 2022; 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 2022; 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 6-year timespan, with the ninth edition used for 2015–16 and 2016–17 data, the tenth edition used for 2017–18 and 2018–19 data and the eleventh edition used for 2019–20 to 2021–22 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 2022). This is the case when a diagnosis code of ‘palliative care’ is recorded during a hospitalisation.

Starting with the 9th edition of the ICD-10-AM, a specific coding standard (‘2116’) was created and applied to the recording of ‘palliative care’ as a diagnosis (ACCD 2015). The classification instruction clarified that ‘palliative care’ (Z51.5) 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. Prior to the ICD-10-AM 9th Edition, standard ‘0224’ was used for coding ‘palliative care’, where ‘palliative care’ (Z51.5) must be assigned as an additional diagnosis only, to indicate that the episode of care involved care by a palliative care team. Note, if Z51.5 is reported as a principal diagnosis, the hospitalisation is still counted in this reporting. Therefore, palliative care-related hospitalisations prior to 2015 are not directly comparable with data after 2015. 

In 2021–22, there were about 94,800 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 care type of ‘palliative care’, or both.

From 2015–16, there was a notable increase in 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 changes mentioned before 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 care type of ‘palliative care’ or a diagnosis code of ‘palliative care’ (AIHW 2022). For more information on identifying palliative care hospitalisations, refer to ‘Identifying palliative care separations in admitted patient data: technical paper’ (AIHW 2011).

Reporting palliative care-related hospitalisations

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. Since then, the total number of these hospitalisations 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.

In view of this, 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 on care type and diagnosis information to identify palliative care-related hospitalisations. Therefore, from 2020 onwards, the statistics presented in Palliative care services in Australia distinguish between hospitalisations with a care type of ‘palliative care’ and those only with a diagnosis of ‘palliative care’ (Z51.5) but the care type was not recorded as ‘palliative care’. 

Between 2020 and 2023, the AIHW considered the most appropriate wording for describing how these 2 groups are identified in the hospital data. From 2023 onwards, the term: 

• ‘primary palliative care hospitalisation’ is used to refer to hospitalisations with a recorded care type of ‘palliative care’. Between 2020 and 2022, this was referred to as ‘palliative care hospitalisation’
• ‘other palliative care hospitalisation’ is used to refer to a recorded diagnosis of ‘palliative care’ (Z51.5) but the care type is not recorded as ‘palliative care’. Between 2020 and 2022, this was referred to as ‘other end-of-life care hospitalisation’. As end-of-life care is generally defined as people who are likely to die within 12 months, this term was changed in 2023 to capture the broader concept of palliative care.

References

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 edition – 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 edition – and the Australian Classification of Health Interventions (ACHI) – 10th edition – 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, AIHW, Australian Government, accessed 27 August 2023.

AIHW (2022) Admitted patients, AIHW, Australian Government, accessed 31 July 2023.

This section describes data presentation calculation methodologies.

Population rates

Population rates were calculated using the ABS estimated resident population (ERP) at the midpoint of the data range (for example, rates for 2021–22 financial year data were calculated using ERP at 31 December 2021, while rates for 2022 calendar year data were calculated using ERP at 30 June 2022).

Crude rates

A crude rate provides information on the number of events (for example, palliative care-related 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.

Age-specific rates

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 Hospitals – Admitted patient palliative care section; they are expressed per 10,000 population and were based on ABS population estimates as at 31 December 2021 for 2021–22 financial year, for example.

Age-standardised rates

Age-standardised rates are rates that adjust the crude rate to eliminate the effect of differences in population age structures when comparing crude rates for different periods of time, different geographic areas and/or different population sub-groups (for example, between one year and the next and/or States and Territories, Indigenous and non-Indigenous populations).

Direct standardisation was used in this report. To calculate age-standardised rates, age-specific rates (grouped in 10-year intervals, except for the age group of 0–14 and 85 and over) were multiplied against a standard population. Directly age-standardised rates were adjusted using the current Australian standard population (that is, the non-recast Australian estimated resident population (ERP) as at 30 June 2001).

Rates are expressed as per 10,000 per population.

Average annual rates of change

Average annual rates of change or growth rates have been calculated as geometric rates:

Descriptive analyses

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.

Disease-related information

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 2022a; ACCD 2016).

Information relating to cancer

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.

Approach used to identify hospitalisations with a principal diagnosis of cancer

Hospitalisations that met one of the following criteria were considered to have a principal diagnosis of cancer.

1. Those with a principal diagnosis code of C00–C96, D45, D46, D47.1 or D47.3–D47.5 from the ‘Neoplasms’ chapter of ICD-10-AM.
   • Note that some ICD-10-AM ‘D’ codes are included in this list of invasive neoplasms (that is, cancers) since the related diseases – such as polycythaemia vera (D45) – were not considered to be invasive at the time of the publication of ICD-10 (WHO 1992), but were reclassified as invasive with the publication of the ICD classification that dealt specifically with neoplasms (WHO 2000).
2. Those with a principal diagnosis from Chapter 21 of ICD-10-AM (that is, ICD-10-AM ‘Z’ codes) that was directly related to receiving health services or treatment for cancer as follows:
   • Follow-up examination after treatment for malignant neoplasms (Z08)
   • Breast prophylactic surgery for risk-factors related to malignant neoplasms (Z40.00)
   • Ovary prophylactic surgery for risk-factors related to malignant neoplasms (Z40.01)
   • Radiotherapy session (Z51.0)
   • Pharmacotherapy session for neoplasm (Z51.1)
   • Convalescence following radiotherapy (Z54.1)
   • Convalescence following chemotherapy (Z54.2)

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 Deaths in Australia (AIHW 2022b) have been used, with some variations. A full list is shown in Table 1 below.

Patient day statistics

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 National Hospital Morbidity Database (NHMD) contains records for patients ceasing hospitalisation during a specific reporting period (such as 1 July 2020 to 30 June 2021), 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 2020–21, but who were admitted before 1 July 2020, will be generally counterbalanced by the patient days for patients still in hospital after 30 June 2021 who will cease hospitalisation in future reporting periods.

Quality of Indigenous status data

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 – National Hospital Morbidity Database, findings of the report indicated that the ‘true’ number of Aboriginal and Torres Strait Islander (First Nations) people 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.

References

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 edition – and the Australian Classification of Health Interventions (ACHI) – 10th edition – 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, AIHW, Australian Government, accessed 28 July 2023.

AIHW (2019) Cancer in Australia 2019, AIHW, Australian Government, accessed 29 August 2023.

AIHW (2022a) Admitted Patients, AIHW, Australian Government, accessed 17 August 2023.

AIHW (2022b) Deaths in Australia, AIHW, Australian Government, accessed 15 February 2023.

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.