Palliative care outcomes

In 2021, 58,700 patients received palliative care from the 177 palliative care services voluntarily participating in the Australian Palliative Care Outcomes Collaboration (PCOC) program. This section provides information on the characteristics and outcomes for patients receiving palliative care from the palliative care services participating in PCOC over the period 2017 to 2021.

Note, as participation in PCOC is voluntary, not all services participate in PCOC. The data presented in this section therefore describe a subset of all palliative care delivered in Australia. Further information about PCOC is described below and in the Data Sources section.

The information in this section was last updated in October 2022.

Key points

In 2021, among patients who received palliative care reported to PCOC:

  • 2 in 3 (66%) patients had a diagnosis of cancer.
  • 3 in 4 (77%) palliative care closed episodes ended within 30 days, with most ending within 2 weeks (62%).
  • Almost 9 in 10 (88%) 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 palliative care phase (89% for pain severity and 88% for distress from pain).
  • 3 in 5 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 59% for distress from pain).

Downloads

PDF version of this section

Latest data tables

Overview of patients, episodes of care and phases

In 2021, 58,700 patients received palliative care from the 177 palliative care services participating in PCOC. There were slightly more men (52%) than women (48%) and 2 in 3 patients had a diagnosis of cancer (66% of all palliative care patients). For further details on the characteristics of these patients, see Tables PCOC.2–4.

In 2021, there were 77,500 palliative care episodes reported to PCOC, equating to an average of 1.3 palliative care episodes per patient. Among these palliative care episodes:

  • There were similar number of episodes in community and inpatient settings (38,200 and 39,400, respectively; Table PCOC.1).
  • Median age at the start of the episode of care was 76 years (Table PCOC.2).
  • Almost 3 in 5 (57%) referrals were from public hospitals and 10% from community palliative care services (Table PCOC.5).

There were 73,400 episodes that ended (closed episodes) in 2021. Among these closed episodes:

  • 3 in 4 (77%) ended within 30 days, with most ending within 2 weeks (62%).
  • Inpatient episodes were generally shorter in duration than community episodes – with a median duration (elapsed days) of 5 days compared with 20 days in the community setting:
    • Inpatient episodes were 3 times as likely to end within 2 days (34% vs 11%) and twice as likely to end within 14 days (84% vs 38%) compared with community episodes.
    • Community-based episodes were 4 times as likely to end 15 days or after (63% vs 16%) and 9 times as likely to end 31 days or after (44% vs 4.7%) compared with inpatient episodes (Table PCOC.6).

In 2021, there were 175,200 palliative care phases recorded in PCOC, with just over half (52%) occurring in community settings (90,500 compared with 84,700 in inpatient settings). On average, patients had 2.4 phases per closed episode (2.2 in inpatient settings compared to 2.6 in community settings) and 3.0 phases per patient (Table PCOC.1). Among these palliative care phases:

  • 2 in 5 (41%) were deteriorating phases and 1 in 3 (31%) were stable phases, with terminal (16%) and unstable (13%) phases about half as common as stable phases (Table PCOC.7).
  • Deteriorating and stable phases were more common for those in community settings (45% and 35%, respectively) than in inpatient settings (37% and 25%, respectively), while terminal and unstable phases were more common for those in inpatient settings (23% and 16% compared with 9% and 11% in community settings, respectively; Figure PCOC.1).
  • The average length of each phase was longer for those in community than inpatient settings, particularly for those in stable and deteriorating phases where duration of the phase was 3.7 and 2.9 times as long for those in community settings than in inpatient settings (21.4 days vs 5.8 days for stable phase and 13.4 days vs 4.6 days for deteriorating phase, respectively; Table PCOC.7).

Figure PCOC.1: Overview of episodes of care and phases reported to PCOC, 2021

Figure 1.1: The interactive data visualisation shows the proportion of referral source by care setting in 2021. Public hospitals accounted for the largest number of referrals across both inpatient and community settings. The second largest number of referrals for inpatient settings was community palliative care services, and for community settings was general practitioners.

Figure 1.2: The interactive data visualisation shows the number and percentage of elapsed days of closed episodes by inpatient and community care setting. For inpatient care setting, the highest number of episodes were closed in 1-2 days, while for community care settings, the highest number were closed after 90 days.  

Figure 1.3: The interactive visualisation shows the number and percentage of phases, per phase type by inpatient and community care setting. Inpatient and community settings had a similar proportion of phases in each phase type. The largest number of phases occurred in the deteriorating phase, while the least number of phases occurred in the unstable phase.

Palliative care patient outcome measures

Key measures of quality care are the outcomes that patients, their families and carers achieve. PCOC is a national program that aims to systematically improve patient and carer outcomes, using standardised validated clinical assessment tools to benchmark and measure outcomes.

In 2021, among the 77,500 palliative care episodes and 175,200 palliative care phases recorded in PCOC:

  • Over 4 in 5 (86%) episodes commenced on the day the patient was ready for palliative care, or the day after – 98% of episodes in inpatient settings and 84% in community settings.
  • Almost 9 in 10 (88%) unstable phases were resolved within 3 days or less – 89% in inpatient settings and 86% in community settings.
  • Almost 9 in 10 palliative care phases that started with absent/mild patient pain remained absent/mild at the end of the palliative care phase – pain severity (89%), distress related to pain (88%), distress related to fatigue (87%), and family/carer problems (88%). For distress related to breathing problems a higher proportion remained in the absent/mild phase (94%).
  • The proportion of phases resolved in the absent/mild symptom outcome range was less likely when the patient had moderate/severe symptoms to begin with, especially for those with distress related to fatigue and breathing problems:
    • 3 in 5 palliative care phases that began with moderate or severe pain for patient pain or distress was reduced to absent/mild by the end of the palliative care phase (pain severity 62%, distress from pain 59%).
    • 1 in 2 palliative care phases starting with moderate or severe distress from fatigue or breathing problems was reduced to absent/mild at the end of the palliative care phase (fatigue 50%, breathing problems 52%; Figure PCOC.2.)

Figure PCOC.2: Palliative care patient outcome results for each benchmark, 2021

Figure 2.1 and 2.2: The interactive visualisation shows the outcomes of the PCOC benchmarks by care setting. The benchmarks have been grouped in four categories including time from date ready for care to episode start (benchmark 1), time in unstable phase (benchmark 2), absent or mild symptoms/problems (benchmarks 3.1, 3.3, 3.5, 3.7, and 3.9), and moderate or severe symptoms/problems (benchmarks 3.2, 3.4, 3.6, 3.8 and 3.10). 

Trends in palliative care patient outcomes, including during the COVID-19 pandemic

Between 2017 and 2021, the number of services participating in PCOC increased each year, from 130 to 177 services or a 36% increase over this period. The rate of increase was steepest between 2018 and 2020 (11% increase from 2018 to 2019 and 15% increase from 2019 to 2020), and then slowed considerably between 2020 and 2021 (4% increase in services; Figure PCOC.3).

This pattern was also observed for palliative care episodes over the same period – episodes increased by 12–13% between 2018 and 2020 and slowed to a 7.1% increase in the following 12 months to 2021. However, this trend differed somewhat by care setting. For inpatient palliative care episodes, the increase was moderate from 2019 to 2020 (6.4%), but then increased more sharply (12%) in the following 12 months to 2021, which was similar to the increase from 2018 to 2019 (14%). In contrast, for community-based episodes, the increase was steepest (19%) between 2019 and 2020 and then considerably flat (2.2%) in the following 12 months to 2021. Interestingly, the number of patients steadily increased over this period – 12–13% increase between 2018 and 2020, slowing slightly to 10% increase between 2020 and 2021 (Figure PCOC.3).

These patterns of moderate increases of services and episodes reported to PCOC between 2020 and 2021 and the steeper increase in community than inpatient episodes during 2019 and 2020 may reflect the stricter public health restrictions and lockdowns in certain regions at these times to contain the spread of COVID-19.

Figure PCOC.3: Trends in services, patients, episodes of care and phases reported to PCOC, 2017 to 2021

Figure 3.1: This line graph shows the trend of number of participating services in PCOC from 2017 to 2021 by care setting. The number of services increased every year in this period, however the rate of increase began to slow between 2020 and 2021.

Figure 3.2: This line graph shows the trend of number of patients reported to PCOC from 2017 to 2021 by care setting. The number of patients increased steadily every year in this period.

Figure 3.3: This line graph shows the trend of number of episodes reported to PCOC from 2017 to 2021 by care setting. The number of episodes increased every year in this period, however the rate of increase began to slow between 2020 and 2021.

Figure 3.4: This line graph shows the trend of number closed episodes reported to PCOC from 2017 to 2021 by care setting. The number of closed episodes increased every year in this period, however the rate of increase began to slow between 2020 and 2021.

Figure 3.5: This line graph shows the trend of number of phases reported to PCOC from 2017 to 2021 by care setting. The number of phases increased every year in this period, however the rate of increase began to slow between 2020 and 2021.

Of particular interest is whether there have been changes in recent years in the proportion of patients achieving a positive outcome, particularly given the disruptions to service delivery due to the pandemic. Since 2019, most outcome measures have remained relatively similar or improved (Figure PCOC.4). However, there have been some measures where more notable movements have been observed between 2019 and 2021:

  • steady decline (by 6.6 percentage points) in those assessed as ready for care and receiving it within 2 days and from 93% to 86% between 2019 and 2021
  • increase in those moving from moderate/severe to absent/mild at the end of the phase for distress from fatigue (from 45% to 50%) and from breathing problems (48% to 52%) between 2019 and 2021.

The restrictions and subsequent pressures on the health care system due to COVID-19 may have impacted on how people were accessing and receiving palliative care services, and their outcomes during this period. However, more data over a longer time, including patients experiencing COVID-19 who received palliative care, are needed to provide insights on the effects of the COVID-19 pandemic on palliative care service activity and outcomes.

Figure PCOC.4: Trends in palliative care patient outcome results for each benchmark, 2017–2021

Figure 4: This interactive visualisation shows the trend of benchmark outcomes between 2017 and 2021, by care setting.