Palliative care outcomes

The Australian Palliative Care Outcomes Collaboration (PCOC), established in 2005, is a national palliative care outcomes and benchmarking program. PCOCs primary objective is to systematically improve patient outcomes, including pain and symptom control.

The information presented in this section refers to specialist palliative care service data reported to PCOC for the 1 January to 31 December 2018 period. Three levels of PCOC data items are presented here: patient-level, episode-level and phase-level care data. The items in the PCOC data collection:

  • Provide clinicians with an approach to systematically assess individual patient experiences.
  • Include routine Patient Reported Outcomes Measures (PROMs) relating to symptom distress.
  • Define a common clinical language to allow palliative care providers to communicate with each other.
  • Facilitate the routine collection of nationally consistent palliative care data for the purpose of reporting and benchmarking to drive improvement in palliative care.

As participation in PCOC is voluntary, the data presented in this section describe a subset of all specialist palliative care services delivered in Australia in 2018.  In 2018, 133 palliative care services voluntarily participated in PCOC. For further information about PCOC, refer to their website.

Data downloads

Palliative care outcomes tables 2018 (429KB XLS)

Palliative care outcomes section 2018 (379KB)

The information in this section was last updated in September 2019.

Key points

  • 42,163 patients accessed specialist palliative care services from 133 PCOC participating palliative care providers in 2018.
  • 57,221 episodes of care were provided, of which just over half were inpatient episodes.
  • 77.0% of episodes were characterised by a cancer diagnosis.
  • 75.0 was the median age for all patients reported to PCOC during 2018.
  • 94.2% of patients had their care commence on the day of, or the day after, the date they were ready for palliative care (Benchmark 1).
  • 87.9% of patients had urgent needs (i.e. unstable phase) managed in 3 days or less (Benchmark 2).

Inpatient and community care

In 2018, 42,163 patients accessed palliative care from 133 specialist palliative care services participating in PCOC, a 5.9% increase in the number of patients since 2017. There were 57,221 episodes of care reported to PCOC, of which just over half (50.5%) were inpatient episodes. This equates to an average of 1.4 episodes of palliative care per patient.

The information provided on total number of days for episodes of care is categorised by 2 broad types of care— inpatient and community. It should be noted that the number of patients reported to PCOC refers to patients who may receive services both within the inpatient and community settings. Hence, the same patient can have an inpatient episode and then subsequent community episodes and therefore may be counted for both service settings.

Patient characteristics

Age, sex and Indigenous status

The age profile of patients receiving palliative care is shown in Figure PCOC.1. People aged 65–84 accounted for over half of all episodes (52.6%). The age profile of patients in inpatient and community care settings did not differ substantially.

 

Figure PCOC.1 Alternative text - Source data: Palliative care outcomes tables (429KB XLS)

The average age for all patients reported to PCOC during this period was 73.1, with a median age of 75.0. Males accounted for 52.9% (30,260) of episodes.

In 2018, 1.6% (638) of PCOC palliative care patients were Aboriginal and Torres Strait Islander people, compared with an estimated 3.3% of the general population (ABS 2018a).

Preferred language and country of birth

In 2018, English was reported as the preferred language by 90.0% of PCOC patients. This was followed by Italian (1.9%), Greek (1.4%) and Chinese languages (1.2%). A different distribution to these findings was observed in the 2016 Census (ABS 2017a) for the Australian population, where 72.7% of people were recorded as speaking English only, followed by Mandarin (2.5%), Arabic (1.4%), Cantonese (1.2%) and Vietnamese (1.2%).

The main country of birth of PCOC patients was Australia (62.8%), followed by England (14.2%), Italy (7.1%) and Greece (1.7%). The estimated resident population for 2018 showed a slightly different distribution, with Australia and England being the top 2 countries of birth (70.6% and 4.0% respectively) followed by China (2.6%), India (2.4%) and New Zealand (2.3%) (ABS 2017b).

Diagnosis

In 2018, almost 4 in 5 episodes (77.0%) involved a cancer diagnosis—the 3 most frequently recorded diagnoses were lung cancer (16.7%), colorectal (bowel) cancer (8.4%) and other gastro-intestinal cancers (7.3%)—a result similar to that observed in 2017.

Socioeconomic status

Compared to the distribution of the Australian population across socioeconomic status groups (i.e. 20% of the population per socioeconomic quintile or level), PCOC episodes were moderately over-represented, proportionally, towards those living in areas classified as having the least socioeconomic disadvantage. In 2018, the highest proportion of episodes, almost one-third (29.3%), was seen for those patients living in areas classified as having the least socioeconomic disadvantage, with this group proportionally over-represented in both inpatient and community settings. People living in areas classified as having the most socioeconomic disadvantage accounted for about 1 in 7 PCOC episodes (15.9%) (Figure PCOC.2).

Socioeconomic status is described here using the Australian Bureau of Statistics Index of Relative Socio-Economic Advantage and Disadvantage (IRSAD) (ABS 2018b).

 

Figure PCOC.2 Alternative text - Source data: Palliative care outcomes tables (429KB XLS)

Episode length

The following information refers to closed episodes within the inpatient and community care setting reported to PCOC for 2018. An episode may be closed because the:

  • setting of palliative care changes
  • principal clinical intent of the care changes and the patient is no longer receiving palliative care
  • patient is formally separated from the service
  • patient dies

There were 56,839 PCOC episodes which ended in 2018, compared with 41,882 in 2014 (an annual average increase of 6.3%). Inpatient episodes were generally shorter in duration than community episodes. In 2018, about 8 in 10 (78.7%) inpatient episodes lasted between 1 and 14 days (including same-day), whereas around 3 in 5 (63.5%) community episodes were 15 days or longer (Figure PCOC.3).

In 2018, the average length of all episodes (elapsed days) in the inpatient setting was 10.2 days, with a median of 6.0 days. The difference between the average and the median number for inpatient episodes was due to a relatively small set of very long episodes, whereas for Community episodes, the proportion of long episodes was larger.

 

Figure PCOC.3 Alternative text - Source data: Palliative care outcomes tables (429KB XLS)

Palliative care episodes over time

Between 2014 and 2018 the number of PCOC closed episodes increased for both inpatient (from 23,192 to 28,759) and community palliative care patients (from 18,690 to 24,649) (Figure PCOC.4). This is an average annual increase of 4.4% for inpatient closed episodes and a 5.7% increase for community-based closed episodes over the period.