Palliative care outcomes

The Australian Palliative Care Outcomes Collaboration (PCOC), established in 2005, is a national palliative care outcomes and benchmarking program, using standardised validated clinical assessment tools. PCOC’s primary objective is to systematically improve palliative care patient outcomes, including pain and symptom control, and timely access to services when they are needed (see the Data Sources section for further details).

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The information in this section was last updated in October 2021.

Key points

In 2020:

  • One in 2 (52%) palliative care episodes recorded by PCOC occurred in community settings.
  • Almost 3 in 4 (72%) palliative care episodes were for people with cancer.
  • Patients receiving palliative care had a median age of 76 years.
  • The vast majority (93%) of palliative care episodes commenced on the day the patient was ready for palliative care, or the day after.
  • Around 90% of palliative care phases that started with absent/mild patient pain remained absent/mild at the end of the palliative care phase (89% for pain severity and 88% for distress from pain).
  • Around 60% of palliative care phases that began with moderate/severe patient pain reduced to absent/mild by the end of the palliative care phase (62% for pain severity and 57% for distress from pain).

The information presented in this section refers to palliative care service data reported to PCOC for the 1 January 2020 to 31 December 2020 period. Three levels of PCOC data items are presented here: patient-level, episode-level and phase-level care data (see Box PCOC.1).

As participation in PCOC is voluntary, the data presented in this section describe a subset of all palliative care services delivered in Australia. For further information about PCOC, refer to the Australian Health Services Research Institute's PCOC information page.

Box PCOC.1. Defining patients, episodes and phases

Patients: patients receiving palliative care from palliative care service providers that participate in PCOC.

Episode of care: a period of contact between a patient and a service where palliative care is provided in a single setting (such as hospital or community). Patients can have more than 1 episode of care when accessing palliative care services. Multiple episodes of care can occur if a patient’s care needs change, they no longer require palliative care, or they change settings. For example, if a patient receives care at home and then transitions to care in a hospital, this would be reflected as 2 separate episodes.

Phases: episodes of care are composed of phases. Palliative care phases, based on the clinical condition of the patient, are used to describe the care needs of patients and their families to indicate whether or not the current care plan meets these needs. The palliative care phase types are: stable, unstable, deteriorating and terminal.

Inpatient and community care

The information provided for palliative care episodes is categorised into 2 broad settings of care—inpatient and community. Inpatient episodes cover admissions to hospital or hospice. Community episodes are those that occur in the patient’s 'home’. For example, this may be in their private residence, aged care, mental health or disability residential service.

In 2020, 53,300 patients received palliative care from the 170 palliative care services participating in PCOC. There were 72,400 episodes of care reported to PCOC, equating to an average of 1.4 palliative care episodes per patient. The number of palliative care episodes was slightly higher in community settings (52% of all episodes) than in inpatient settings (see Table PCOC.1).

It should be noted that patients included in PCOC data may receive services within both the inpatient and community settings, and therefore may be counted in both service settings.

Patient characteristics

Age, sex, and Indigenous status

In 2020, the number of palliative care episodes increased steeply with age from age 45 onwards, as shown in Figure PCOC.1. People aged 65 and over accounted for over three-quarters of all episodes (77%) compared with 14% for those aged 55–64 and 6% for those aged 45–54. The median age of patients across all episodes was 76 years.

The age profile of patients in inpatient and community care settings were similar.

In 2020, males had slightly more episodes of palliative care than females, with males accounting for 52% of all episodes (Table PCOC.9).

In 2020, 936 patients identifying as Aboriginal and/or Torres Strait Islander received palliative care from palliative care services participating in PCOC (1.8% of all palliative care patients in PCOC; Table PCOC.10).

Figure PCOC.1: PCOC palliative care episodes by age group, by care setting, 2020

Vertical bar chart showing the per cent of PCOC palliative care episodes by age group and care setting. People aged less than 25 accounted for 0.1% of episodes in inpatient settings, 0.4% of episodes in community settings, and 0.3% of episodes in all care settings; 25–34, 0.7%, 0.7%, and 0.7%; 35–44, 1.9%, 2.1%, and 2.0%; 45–54, 5.9%, 5.5%, and 5.7%; 55–64, 14.0%, 13.8%, and 13.9%; 65–74, 24.0%, 23.2%, and 23.6%; 75–84, 28.7%, 28.2%, and 28.5%; 85+, 24.7%, 26.1%, and 25.4%. Refer to Table PCOC.9.

Source data: Palliative care outcomes Table PCOC.9

Preferred language and country of birth

In 2020, the main country of birth of PCOC patients was Australia (64%), followed by England (6.7%), Italy (4.1%) and Greece (2.2%). Consistent with this finding, English was reported as the preferred language by 89% of PCOC patients, followed by Italian (2.1%), Chinese languages (1.5%) and Greek (1.5%) (Table PCOC.2).

Diagnosis

Primary diagnosis for palliative care is the principal life-limiting illness for the patient. In 2020, almost 3 in 4 episodes (72%) were for patients with a cancer diagnosis. The 3 most frequently recorded primary diagnoses were lung cancer (15%), colorectal (bowel) cancer (7.8%) and other gastro-intestinal cancers (6.6%) (Table PCOC.3).

Socioeconomic status

Socioeconomic status in Australia can be measured using the Australian Bureau of Statistics Index of Relative Socio-Economic Advantage and Disadvantage (IRSAD). This index summarises information about the economic and social conditions of people and households within an area, including both relative advantage and disadvantage measures (ABS 2013; see Classifications section for further details).

In 2020, receipt of palliative care from palliative care services increases with increasing advantage and less disadvantage, according to the area-based IRSAD, as shown in Figure PCOC.2. The proportion of palliative care episodes increases from 14% for those in the lowest quintile (greatest disadvantage and lack of advantage) to 29% for those in the highest quintile (lack of disadvantage and greatest advantage). This gap between the highest and lowest quintile is even greater for where palliative care is received in the community compared with inpatient setting ─ 2.3 times as high in the community setting (or 32% vs 14% for those in the highest and lowest quintiles) compared with 1.8 times as high in the inpatient setting (26% vs 14%, respectively). For all other quintiles, the proportion receiving palliative care was relatively similar for community and inpatient settings.

Figure PCOC.2: PCOC palliative care episodes by socioeconomic status (IRSAD quintile), by care setting, 2020

Vertical bar chart showing the per cent of PCOC palliative care episodes by socioeconomic status (IRSAD quintile), for inpatient, community, and total care settings. Quintile 1 14.4% (inpatient), 14.3% (community), 14.3% (total); quintile 2 15.2%, 13.8%, 14.5%; quintile 3 20.5%, 20.1%, 20.3%; quintile 4 24.1%, 19.4%, 21.7%; quintile 5 25.8%, 32.4%, 29.2%. Refer to Table PCOC.4.

Source data: Palliative care outcomes Table PCOC.4

Episode length

A palliative care episode is a period of contact between a patient and a service where palliative care is provided in a single setting (for example, inpatient setting). A palliative care episode starts on the date a comprehensive palliative care assessment is undertaken and documented. An episode ends or is closed when the following occurs:

  • setting of palliative care changes (for example community to inpatient)
  • principal clinical intent of the care changes and the patient is no longer receiving palliative care
  • the patient is formally separated from the service
  • the patient dies.

There were 69,000 PCOC episodes that ended (closed episodes) in 2020. Of these, 3 in 5 (60%) ended within 2 weeks and 1 in 4 (24%) ended after 30 days.

Inpatient episodes were generally shorter in duration than community episodes. Inpatient episodes were twice as likely to end within 14 days than community episodes (82% compared with 38%), and in particular were 3 times as likely to end within 1-2 days (23% vs 7%). In contrast 1 in 20 (4.9%) inpatient episodes ended after 30 days compared to 2 in 5 (43%) of community based episodes (Figure PCOC.3).

In 2020, the median length of all episodes (elapsed days) in the inpatient setting was 5 days compared with 20 days in the community setting (Table PCOC.8).

Figure PCOC.3: PCOC closed episodes, number of elapsed days, by care setting, 2020

Vertical bar chart showing the per cent of PCOC closed episodes by number of elapsed days, for inpatient, community and total care settings. 9.2% of inpatient settings, 5.2% of community settings, and 7.2% of total episodes closed after less than 1 day; 1–2 days, 22.8%, 6.6%, and 14.8%; 3–4 days, 15.3%, 5.7%, and 10.5%; 5–7 days, 16.4%, 7.9%, and 12.2%; 8–14 days, 18.3%, 12.8%, and 15.6%; 15–21 days, 8.3%, 9.5%, and 8.9%; 22–30 days, 4.8%, 9.1%, and 6.9%; 31–60 days, 4.0%, 16.0%, and 10.0%; 61–90 days, 0.6%, 8.1%, and 4.3%; more than 90 days, 0.3%, 19.1%, and 9.6%. Refer to Table PCOC.6.

Source data: Palliative care outcomes Table PCOC.6

Palliative care episodes over time

Between 2016 and 2020 the number of PCOC closed episodes in each corresponding year increased by 9.9% on average annually (from 47,300 in 2016 to 69,000 in 2020). The rate of increase was steeper for community settings than inpatient settings (average increase of 13% per year compared with 7.0% per year, respectively; see Figure PCOC.4).

Figure PCOC.4: PCOC number of closed episodes that ended in each year, by care setting, 2016 to 2020

Horizontal line chart showing the number of closed episodes by palliative care setting from 2016 to 2020. 2016, 26,592 (inpatient), 20,726 (community), and 47,318 (total); 2017, 28,137, 22,953, and 51,090; 2018, 28,759, 24,649, and 53,408; 2019, 32,695, 29,007, and 61,702; 2020, 34,838, 34,145, and 68,983. Refer to Table PCOC.5.