Summary

Palliative care services is an Australia's health topic

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Palliative care aims to prevent and relieve suffering and improve the quality of life of people (adults, children, and their families) facing problems associated with life-limiting illness. Palliative care can be delivered by a wide range of health and community providers. It is not limited to any specific condition, and it can be delivered at any stage of illness, including with curative treatments. With an ageing and growing population, it is projected that the demand for palliative care and end-of-life care will increase substantially.

One significant challenge is identifying and accessing information on the provision of palliative care services and who is receiving these services. This information is crucial for better understanding the current situation and providing evidence base for future planning.

For further information on the definitions, data, and data sources used on this page, see Glossary and Technical information.

Box 1: Overview of palliative care services and data availability 

In Australia, government agencies, as well as private and not-for-profit bodies, deliver palliative care in many health care settings, including but not limited to:

  • specialist inpatient and community-based palliative care services
  • neonatal units
  • paediatric services
  • geriatric services
  • public and private hospitals
  • general practices
  • disability services
  • residential and community aged care services.

Identifying palliative care (including end-of-life care) in existing data collections and health settings remain a key issue, particularly for care delivered in community, primary care, and residential aged care settings. For example, limited national data are currently available on community-based palliative care services and Medicare Benefits Schedule (MBS)-subsidised services provided by general practitioners and non-palliative care medical specialists. The data on this page focus on specific settings where systems are in place to record palliative care service, in particular specialist palliative care. 

The Australian Institute of Health and Welfare (AIHW) is working with palliative care stakeholders to help address data gaps in palliative care reporting. The AIHW, in collaboration with the End-of-Life Care Data Development Working Group, released the National Palliative Care and End-of-Life Care Information Priorities report in January 2022. This report outlines an aspirational vision for national palliative care information development over the next decade and articulates priorities aimed at supporting this vision. 

Hospitalisations

Palliative care-related hospitalisations are those episodes of admitted patient care where palliative care was a component of the care provided during all or part of an episode of admitted patient care. These hospitalisations can be divided into 2 groups depending on how they are identified in the hospital data:

There were 94,800 palliative care-related hospitalisations in public and private hospitals in 2021–22.

In 2021–22, for these palliative care-related hospitalisations: 

  • males accounted for just over half (53%) and the average age at admission was 75 years
  • 51,300 were for primary palliative care and 43,500 for other palliative care, equating to 19.9 and 16.9 per 10,000 population, respectively
  • 2 in 5 (40%) had a principal diagnosis of cancer – 1 in 2 (49%) for primary palliative care hospitalisations and almost 1 in 3 (29%) for other palliative care hospitalisations
  • average length of stay was almost twice as long as for all overnight hospitalisations (hospitalisations that exclude same-day stays) – 10.3 days (9.3 days for primary palliative care and 11.5 days for other palliative care) compared with 5.7 days for all hospitalisations
  • 2 in 3 (67%) primary palliative care hospitalisations ended with the patient dying in hospital compared with 43% for other palliative care hospitalisations.

Between 2015–16 and 2021–22, there was a 29% increase in the number of palliative care-related hospitalisations – this increase was at a steeper rate than for all hospitalisations (10% increase) over the same period.

For more information, see Hospitals – Admitted patient palliative care.

Medicare-subsidised specialist services

Medicare Benefits Schedule (MBS)-subsidised palliative specialist services in this report relate to palliative medicine attendances and case conferences that are both provided by palliative medicine physicians or specialists and are claimed under specialist palliative care MBS item numbers. Note that palliative care physicians and specialists may at times use other MBS items when attending to palliative care patients, and other health professionals also attend to terminally ill patients and provide palliative care. These items are not included in the data here, as they are not claimed specifically as a palliative care-related service and cannot be identified in the MBS data.

There were 13,900 people who received 66,300 Medicare-subsidised palliative medicine attendance and case conference services provided by palliative medicine physicians or specialists in 2022–23.

In 2022–23, for these palliative medicine attendance and case conference services:

  • 3 in 4 (77%) were provided to people aged 65 and over, including 21% for those aged 85 and over
  • an average of 4.8 services were provided per person
  • 4 in 5 services (83% or 55,200) were for attendances in a consulting room or a hospital, 3.8% (2,500) were for attendances in other settings (such as a person’s place of residence) and 13% (8,700) were for case conferences (community case conference and discharge case conference).

Between 2013–14 and 2018–19, the number of palliative medicine attendance and case conference services increased by 26% (71,900 to 90,600) and then declined by 27% (90,600 to 66,300) over the next 4 years to 2022–23. This was broadly consistent with the pattern observed for the number of people receiving these services over the same period – increasing by 33% (12,300 to 16,500) between 2013–14 and 2018–19 before declining by 15% in the following 4 years to 2022–23 (16,500 to 13,900).

For more information, see Medicare-subsidised palliative medicine attendance and case conference services.

Medications

Palliative care-related prescriptions are an important component of care for palliative patients. One of the attributes of palliative care is to ‘provide relief from pain and other distressing symptoms’ (WHO 2020). Palliative care-related prescriptions are defined as those listed in the Palliative Care Schedule under the Pharmaceutical Benefits Scheme (PBS) and Repatriation Pharmaceutical Benefits Scheme (RPBS). This schedule aims to improve access to essential and affordable medications for patients receiving palliative care. For further details, see Technical information: Data sources – May release.

There were 1.3 million palliative care-related prescriptions provided to 454,000 people in 2022–23.

In 2022–23, for these palliative care-related prescriptions:

  • an average of 2.9 prescriptions were provided per person 
  • one million prescriptions were for pain relief, accounting for 78% of all palliative care-related prescriptions
  • 9 in 10 (90%) palliative care-related prescriptions were prescribed by general practitioners, with the vast majority (80%) for pain relief.

Between 2016–17 and 2022–23, the number of palliative care-related prescriptions increased by 47% (908,000 to 1.3 million). Meanwhile, the number of people dispensed with palliative care-related prescriptions declined by 8.2% (495,000 to 454,000), leading to an increase in the number of prescriptions per person from 1.8 to 2.9 over this period.

For more information, see Palliative care-related medications.

Residential aged care

The Australian Government subsidises residential aged care services for older Australians who can no longer live in their own homes. The data used here are based on people in permanent residential aged care (PRAC) with an Aged Care Funding Instrument (ACFI) appraisal indicating need for end-of-life palliative care and for whom a claim was submitted. Information on actual service provision and palliative care requirements for a longer period (not just end-of-life care) is a considerable national data gap.

There were 4,800 people appraised as requiring palliative care in 2021–22, accounting for 2.0% of all people in permanent residential aged care.

In 2021–22, for people appraised as requiring palliative care in PRAC:

  • 3 in 5 (59%) were aged 85 and over
  • 1 in 5 (21%) had cancer listed as the first condition on their appraisal, compared with 3.7% for those not appraised as requiring palliative care
  • 1 in 2 (50%) exited from PRAC within 8 weeks of admission, compared with 7.9% for those not appraised as requiring palliative care.

Note that a new care funding model (Australian National Aged Care Classification, AN-ACC) has replaced the ACFI from 1 October 2022. The Palliative care for people living in residential aged care chapter will be updated when the AN-ACC data is available.

For more information, see Palliative care for people living in residential aged care.

Outcomes

Key measures of quality palliative care are the outcomes that patients, their families and carers achieve. The Australian Palliative Care Outcomes Collaboration (PCOC) is a national program that uses standardised validated clinical assessment tools to benchmark and measure outcomes.

There were 61,100 patients receiving palliative care from the 180 palliative care services voluntarily participating in the Palliative Care Outcomes Collaboration program in 2022.

In 2022, for patients who received palliative care from services participating in the PCOC program:

  • 3 in 4 (77%) palliative care episodes ended within 30 days, with most ending within 2 weeks (62%)
  • 9 in 10 (87%) unstable phases (urgent needs) were resolved within 3 days or less
  • 9 in 10 palliative care phases that started with absent/mild patient pain remained absent/mild at the end of the phase – 89% for pain severity and 88% for distress from pain.

Achieving an absent/mild symptom outcome is less likely when the patient has moderate/severe symptoms to begin with, especially for those with distress from fatigue, breathing problems and family/care problems – 1 in 2 palliative care phases starting with moderate/severe distress reduced to absent/mild by the end of the palliative care phase for fatigue (50%), breathing problems (53%) or family/care problems (52%). The corresponding proportions for pain severity and distress from pain were 61% and 58%, respectively.  

For more information, see Palliative care outcomes.

Workforce

The palliative care workforce comprises a broad range of professional groups, including specialist palliative medicine physicians, palliative care nurses, general practitioners, pharmacists, allied health professionals, other medical specialists (such as oncologists and geriatricians), as well as other health workers, support staff and volunteers. Each of these play a unique role in supporting people with a life limiting illness to receive comprehensive, patient-centred care. However, existing national data sources only capture information on physicians with a primary specialty of palliative medicine (palliative medicine physicians) and nurses working in palliative care (palliative care nurses). 

There were 311 palliative medicine physicians and 3,518 palliative care nurses employed nationally in 2021.

In 2021:

  • women accounted for 2 in 3 (64%) employed palliative medicine physicians and 9 in 10 (92%) employed palliative care nurses
  • 4 in 5 (84%) of employed palliative medicine physicians and 3 in 4 (72%) of employed palliative care nurses worked in Major cities
  • 3 in 4 (73%) of employed palliative medicine physicians and 1 in 2 (52%) of employed palliative care nurses worked in a hospital setting.

Between 2013 and 2021, there was a 70% increase in the number of employed palliative medicine physicians (from 183 to 311). For employed palliative care nurses, the number increased by 16% (from 3,265 to 3,798) between 2013 and 2020, and then decreased by 7.4% to 3,518 in 2021.

For more information, see Palliative care workforce.

Expenditure

Expenditure data provides important insights in understanding the financial resources used by the health system and how these resources are prioritised.

The Independent Health and Aged Care Pricing Authority (IHACPA) holds the National Hospital Cost Data Collection (NHCDC) that integrates public hospital patient level activity data with the corresponding resources utilised by the hospital in administering care for the patient. 

In 2021–22:

  • 261 public hospitals reported admitted patient palliative care data to the IHACPA, with a total cost of $532.5 million on admitted palliative care.
  • 181 public hospitals reported non-admitted patient palliative care data to the IHACPA, with a total cost of $154.2 million on non-admitted palliative care.

The Australian Government’s expenditure through the Medicare Benefits Schedule (MBS) for palliative medicine attendance and case conference services provided by palliative medicine physicians or specialists are based on allocating a unique item number to each service, as well as indicating the scheduled payment amount. 

In 2022–23, $5.4 million was paid in benefits for Medicare-subsidised palliative medicine attendance and case conference services provided by palliative medicine physicians or specialists, at an average of $390 per patient.

Under the Pharmaceutical Benefits Scheme (PBS) and Repatriation Pharmaceutical Benefits Scheme (RPBS), the Australian Government pays pharmacies the difference between a patient co-payment and the PBS price of a medicine, as listed on the Schedule of Pharmaceutical Benefits (referred as ‘over co-payment’ or a 'subsidised prescription'). If a prescription is priced below the co-payment threshold, it is classified as an ‘under co-payment prescription’ and the consumer pays the total cost.

In 2022–23, the Australian Government spent $36.6 million on palliative care-related medications from the PBS Palliative Care Schedule, at an average of $81 per patient. 

For more information, see Expenditure on palliative care.

Where do I go for more information?

For more information on palliative care services, see:

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