Palliative care services in Australia

National Hospital Morbidity Database

Data on admitted patient palliative care are sourced from the National Hospital Morbidity Database (NHMD). This annual collection is compiled and maintained by the Australian Institute of Health and Welfare (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 (AIHW 2023). The latest available data at the date of publication of this report was 2022–23. A complete Data Quality Statement – NHMD 2022–23 (PDF 580KB) is available online.

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. 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.

Identifying palliative care-related hospitalisations

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 that 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
• 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
• 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’ (AIHW 2024b; 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 (AIHW 2024b; ACCD 2016).

The classification used nationally to assign diagnosis codes is the ICD-10-AM (see Classifications in Technical notes). The specific ICD-10-AM has been updated, with the ninth edition used for 2015–16 and 2016–17 data, the tenth edition used for 2017–18 and 2018–19 data, the eleventh edition used for 2019–20 to 2021–22 data, and the twelfth edition used for 2022–23 data. Further details about each edition, including the differences between editions, can be found in Resources page in IHACPA website. 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 2022–23, there were about 101,000 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 2024b). 

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 hospitalisations for palliative care. From 2023: 

• ‘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.

Coverage

For each of the years considered in this report, the coverage of the NHMD has been very good. For example, in 2022–23, coverage for the NHMD was high – data from all public hospitals were included (AIHW 2024b). 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) 2022–23 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 2022–23,17% 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 hospital analyses of Aboriginal and Torres Strait Islander (First Nations) people and that the ‘true’ number of 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 2024a) 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, are published in the AIHW’s online metadata registry – METeOR and the National Health Data Dictionary: version 16.2.

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.

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

AIHW (2023) Admitted patient care NMDS 2022–23, AIHW, Australian Government, accessed 26 June 2024.

AIHW (2024a) Admitted patients, AIHW, Australian Government, accessed 4 July 2024.

AIHW (2024b) Admitted patient care 2022–23 Appendix information, AIHW, Australian Government, accessed 20 June 2024.