Palliative care services in Australia

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 (52.8%). The age profile of patients in inpatient and community care settings did not differ significantly.

Figure PCOC.1 Alternative text - Source data: Palliative care outcomes Table PCOC.11 (428KB XLS)

The average age for all patients reported to PCOC during this period was 72.8, with a median age of 74.0. Males accounted for 53.2% (28,336) of episodes.

In 2017, 1.8% (606) of PCOC palliative care patients were Indigenous, compared with an estimated 3.0% of the general population (ABS 2013a).

Preferred language and country of birth

In 2017, English was reported as the preferred language by 89.9% of PCOC patients. This was followed by Italian (2.1%), Greek& (1.6%) and Chinese (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 (61.7%), followed by England (7.2%), Italy (4.4%) and Greece (2.4%). A slightly different distribution was observed for the Australian population in the 2016 Census, with Australia and England being the top two countries of birth (71.5% and 4.1%, respectively) followed by New Zealand (2.5%) and China (2.2%) (ABS 2017b).

Diagnosis

In 2017, almost 4 in 5 episodes (77.6%) involved a cancer diagnosis—the 3 most frequently recorded diagnoses were lung cancer (16.3%), colorectal (bowel) cancer (8.7%) and other gastro-intestinal cancers (7.2%)—a result similar to that observed in 2016.

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 slightly over-represented, proportionally, towards those living in the least disadvantaged socioeconomic status areas. In 2017, people living in areas classified as having most socioeconomic disadvantage accounted for about 1 in 7 PCOC episodes (15.3%) (Figure PCOC.2). The highest proportion of episodes, more than one-quarter (28.9%), was seen for those patients living in the least disadvantaged socioeconomic status area, with this group proportionally over-represented in both the inpatient setting and, particularly, the community setting.

Socioeconomic status is described here using the Australian Bureau of Statistics Index of Relative Socio-Economic Advantage and Disadvantage (IRSAD) (AIHW 2016, ABS 2013b).

Figure PCOC.2 Alternative text - Source data: Palliative care outcomes Table PCOC.6 (428KB XLS)

Episode length

The following information refers to closed episodes within the inpatient and community care setting reported to PCOC for 2017. 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 51,090 PCOC episodes which ended in 2017, compared with 40,248 in 2013 (an annual average increase of 6.1%). Inpatient episodes were generally shorter in duration than community episodes. In 2017, over 7 in 10 (72.3%) inpatient episodes lasted between 1 and 14 days, whereas about 3 in 5 (63.4%) community episodes were 15 days or longer (Figure PCOC.3).

In 2017, the average length of all episodes (elapsed days) in the inpatient setting was 10.1 days, with a median of 6.0 days. The difference between the average and the median number is noteworthy, reflecting a skewed distribution for inpatient palliative care episodes because of a relatively small set of very long episodes. This type of distribution was also reflected in the community setting.

Figure PCOC.3 Alternative text - Source data: Palliative care outcomes Table PCOC.8 (428KB XLS)

Palliative care episodes over time

Between 2013 and 2017 the number of PCOC closed episodes increased for both inpatient (from 22,428 to 28,137) and community palliative care patients (from 17,820 to 22,953). This is a 25.5% increase for inpatient closed episodes and a 28.8% increase for community based closed episodes over the period (Figure PCOC.4). The number of service providers reporting to PCOC increased by 22.6% over the same period.

Figure PCOC.4 Alternative text - Source data: Palliative care outcomes Table PCOC.7 (428KB XLS)

Palliative care phases

In the PCOC, a palliative care phase describes a stage of the patient’s illness within an episode of care and provides a clinical indication of the level of care required. There are 4 palliative care phases used in PCOC—stable, unstable, deteriorating and terminal. When assigned, the first three phases reflect the effectiveness of the plan of care and the urgency of response to patient and family care needs. The terminal phase is assigned when the patient is likely to die within days. It should be noted that palliative care phases are not necessarily sequential: the patient may transition back and forth between phases during an episode and there is also likely to be more than one phase of care within an episode.

There were 128,115 palliative care phases reported to PCOC in 2017, with more than half (52.0%) occurring in inpatient palliative care. Of these, almost one-third (32.3%) were in a deteriorating phase followed by stable (25.8%) and unstable (20.8%) phases. Of the almost 61,500 phases reported in the community care setting, 42.2% were in a deteriorating phase, followed by stable (37.6%) and unstable (12.4%) phases (Figure PCOC.5).

For both the inpatient and community care settings, the average phase length (elapsed days) was highest for the stable phase (at 6.9 days and 20.5 days respectively), followed by the deteriorating phase (4.9 days and 11.8 days respectively) and the terminal phase (2.1 days and 3.1 days respectively).

Figure PCOC.5 Alternative text - Source data: Palliative care outcomes Table PCOC.9 (428KB XLS)

Palliative care outcome measures and benchmarks

In 2009, PCOC and participating services, developed and implemented a set of national outcome measures and associated benchmarks to drive service innovation and allow participating services to compare their service nationally.

These outcome measures cover:

1. time from date ready for care to episode start (Benchmark 1)

2. time patient spent in an unstable phase (Benchmark 2)

3. change in symptoms and problems (Benchmark 3).

In 2015, six additional measures relating to fatigue, breathing problems and family/carer problems were introduced. A full description of each of the PCOC benchmarks reported here is shown in Table PCOC.13. PCOC also reports on 8 casemix adjusted outcomes measures, not reported here.

Based on PCOC palliative care outcome benchmark results, in general, patients receiving inpatient (hospital/hospice) care are more likely to achieve better outcomes than patients receiving care at home (Figure PCOC.6)

A high proportion of all patient episodes (94.8%) had care start within two days of the patient being ready (benchmark 1) whilst 86.9% of patients spent three days or less in the unstable phase. Positive outcomes were achieved for 93.7% of patients beginning a phase management of absent to mild breathing problems (benchmark 3.7).

The majority of patients experience no more than absent or mild symptoms or problems. For those patients who did experience moderate to severe distress from fatigue, 42.2% had this reduced to absent or mild (benchmark 3.6). Similarly, moderate to severe distress from breathing problems (benchmark 3.8) was reduced to absent or mild for 44.9%. Over half (56.0%) of patients who began experiencing moderate to severe distress from pain had this improved to absent/mild (benchmark 3.4). Achieving an absent/mild symptom (or problem) outcome is less likely when the patient has moderate or severe symptoms (or problems) to begin with as is reflected in the outcome results.

Figure PCOC.6 Alternative text - Source data: Palliative care outcomes Table PCOC.13 (428KB XLS)

References

ABS 2013a. Estimates of Aboriginal and Torres Strait Islander Australians, June 2011. ABS cat. no. 3238.0.55.001. Canberra: ABS.

ABS 2013b. 2011 Census QuickStats: Australia. Canberra: ABS. Viewed 1 June 2018.

ABS 2017a. 2016 Census: Multicultural (media release). Canberra: ABS.

ABS 2017b. Migration, Australia, 2015-16. ABS cat. no. 3412.0. Canberra: ABS.

AIHW 2016. Australia’s health 2016. Australia’s health series no. 15. Cat. no. AUS 199. Canberra: AIHW.

PCOC 2012. PCOC Version 3.0 Dataset: data dictionary and technical guidelines Wollongong: University of Wollongong. Viewed 30 May 2017.

Alternative text for PCOC figures

Figure PCOC.1

Vertical bar chart showing the per cent of PCOC palliative care episodes by age group and setting. Inpatient and community settings respectively <25 0.3, 0.6; 25—34 0.7, 0.8; 35—44 2.2, 2.3; 45—54 6.7, 6.7; 55—64 15.0, 15.4; 65—74 25.0, 25.5; 75—84 28.0, 27.1; 85+ 22.1, 21.6. Refer to Table PCOC.11. <back to figure>

Figure PCOC.2

Vertical bar chart showing the per cent of PCOC palliative care episodes by socioeconomic status (IRSAD quintile), for inpatient and community care settings. Quintile 1 15.5 (inpatient), 15.0 (community); quintile 2 15.3, 13.4; quintile 3 20.2, 20.6; quintile 4 22.3, 19.4; quintile 5 26.6, 31.5. Refer to Table PCOC.6. <back to figure>

Figure PCOC.3

Vertical bar chart showing the per cent of PCOC closed episodes by number of elapsed days, for inpatient and community care settings. Same-day 6.3 (inpatient), 2.9 (community); 1–2 days 20.8, 6.9; 3–4 15.0, 5.5; 5–7 16.3, 8.3; 8–14 20.2, 13.0; 15–21 9.3, 9.7; 22–30 5.9, 8.9; 31–60 5.0, 17.3; 61–90 0.8, 8.6; >90 0.3, 18.9. Refer to Table PCOC.8. <back to figure>

Figure PCOC.4

Horizontal line chart showing the per cent of closed episodes by palliative care setting from 2013 to 2017. 2013 55.7% (inpatient), 44.3% (community); 2014 55.4, 44.6; 2015 54.3, 45.7; 2016 56.2, 43.8; 2017 55.1, 44.9. Refer to Table PCOC.7. < back to figure>

Figure PCOC.5

Vertical bar chart showing the per cent of phase counts by palliative care phase by inpatient and community setting. Stable 25.8% (inpatient), 37.6% (community); unstable 20.8, 12.4; deteriorating 32.3, 42.2; terminal 21.1, 7.8. Refer to Table PCOC.9. <back to figure>

Figure PCOC.6

Vertical bar chart showing PCOC palliative care outcome benchmark results, by inpatient and community care settings. Benchmark 1 98.3 (inpatient), 90.1 (community); Benchmark 2 90.4, 83.4; Benchmark 3.1 92.1, 85.4; Benchmark 3.2 63.6, 57.4; Benchmark 3.3 90.6, 83.5; Benchmark 3.4 58.7, 52.7; Benchmark 3.5 90.2, 76.6; Benchmark 3.6 51.4, 35.1; Benchmark 3.7 95.6, 91.8; Benchmark 3.8 49.3, 39.9; Benchmark 3.9 92.8, 82.9; Benchmark 3.10 52.4, 46.5. Refer to Table PCOC.13. < back to figure>