Palliative care services in Australia

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’ (ACCD 2016; AIHW 2022). 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 (ACCD 2016; AIHW 2022).

The classification used nationally to assign diagnosis codes is the ICD-10-AM (see Technical information: 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 in IHACPA Resource page. 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 care 2021–22 Appendix information, AIHW, Australian Government, accessed 17 August 2023.