Palliative care phases

A palliative care phase is used to describe the clinical situation of patients and their families and to evaluate the associated care plan or clinical intensity and urgency of the needs of patients and their families.

In PCOC data, a palliative care phase describes a stage of the patient’s illness within a palliative care episode and provides a clinical indication of the level of care required. There are 4 palliative care phases included in PCOC (Box PCOC.2). When assigned, the first 3 phases (stable, unstable, deteriorating) 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. A patient may transition back and forth between phases, therefore it is likely that a patient will have more than one phase within an episode.

Box PCOC.2. PCOC palliative care phases

The 4 palliative care patient phases are:

  • Stable: patient problems and symptoms are adequately controlled by an established plan of care.
  • Unstable: an urgent change in the plan of emergency treatment is required due to a new problem not anticipated in the existing care plan, rapid increase in severity of a current problem, and/or family/carers circumstances change suddenly impacting on patient care.
  • Deteriorating: the care plan is addressing anticipated needs but requires periodic review because the patient’s overall functional status is declining, experiences a gradual worsening of an existing problem, new but anticipated problem, and/or the family/carers experience gradual worsening distress that impacts on patient care.
  • Terminal: death is likely within days (PCOC 2021a).

In 2020, there were about 170,700 palliative care phases included in PCOC, with just over half (54%) occurring in community settings (92,400 compared with 78,300 in inpatient settings). On average, patients had 2.4 phases per episode (2.2 in inpatient settings compared to 2.5 in community settings).

Of all palliative care phases in 2020, 2 in 5 (40%) were in the deteriorating phase, followed by almost 1 in 3 (31%) in the stable phase, with terminal (15%) and unstable (14%) phases about half as frequent (Figure PCOC.5). While deteriorating and stable phases were more common than other phases in both community and inpatient settings, the proportion of these phases were higher in community settings (44% and 36%, respectively) than inpatient settings (35% and 26%, respectively). However, the proportion of phases in the terminal phase in inpatient settings was 2.6 times as high as in community settings (22% compared with 8.4%), with the unstable phase also higher in inpatient settings (18% compared with 12% in community setting).

Figure PCOC.5: PCOC palliative care phases by type of phase, by care setting, 2020

Vertical bar chart showing the per cent of phase counts of palliative care phases by inpatient and community settings. 25.5% of phases in inpatient setting, 36.2% in community setting, and 31.3% of phases in both inpatient and community (total) settings were Stable; Unstable, 17.7%, 11.7%, and 14.4%; Deteriorating, 35.1%, 43.7%, and 39.8%; Terminal, 21.7%, 8.4%, and 14.5%. Refer to Table PCOC.7.

Source data: Palliative care outcomes Table PCOC.7

Palliative care outcome measures and benchmarks

In 2009, PCOC and its participating services developed and implemented a set of national outcome measures and associated benchmarks. The PCOC benchmarks are aspirational and reflect good practice based on outcomes in the top 20% of services. These aim to drive service innovation and allow participating services to compare their service nationally. The PCOC outcome measures cover:

  1. time from the date the patient is ready for palliative care, to palliative care episode start date
  2. time that the patient spent in an unstable phase
  3. change in patient symptoms and problems

A full description of each of the PCOC outcome measures and benchmarks reported here is included in the Data Sources section. Table PCOC.11 also presents each benchmark, along with the proportion of palliative care episodes/phases meeting the outcome for each benchmark in different care settings; see Figure PCOC.6. PCOC also reports on 8 casemix-adjusted outcome measures, not reported here (see PCOC 2021a and PCOC 2021b).

Benchmark 1: 90% of patients must have their episode commence on the day of, or the day following, date ready for care

This benchmark aims to assess whether patients received timely palliative care in response to their need. The vast majority of patient episodes (93%) commenced on the day the patient was ready for palliative care, or the day after. This was the case for almost all episodes in hospital (inpatient) settings (98%) and most episodes in community settings (87%).

Benchmark 2: 90% of patients are in the unstable phase for 3 days or less

The unstable palliative care phase indicates that an urgent change in the plan of emergency treatment is required (see Box PCOC.2). This benchmark aims to assess whether there was a timely resolution of unstable palliative care phases. Overall, the majority of unstable phases (88%) were resolved within 3 days or less, with this proportion slightly higher in inpatient settings than in community settings (90% compared with 86%, respectively).

Benchmark 3: Change in symptoms and problems

A change in symptoms and problems during palliative care provides information about the responsiveness and appropriateness of the care plan in place. A positive outcome for patients is to have symptoms and problems in the absent to mild range at the end of a palliative care phase.

Benchmarks 3.1 to 3.10 represent common palliative care symptoms and problems, including pain severity, distress caused by pain, distress caused by fatigue, distress caused by breathing problems, and family/carer problems.

There are 2 benchmarks for each symptom (or problem):

  • The first benchmark is that at least 90% of phases that start with patients experiencing absent/mild symptoms (problems) remain absent/mild at the end of the phase. This is reflective of anticipatory care.
  • The second benchmark is that at least 60% of phases that start with patients experiencing moderate/severe symptoms (problems) reduce to an absent/mild level by the end of the phase (see Data Sources section for further details). This is reflective of responsive care.

Achieving an absent/mild symptom (or problem) outcome is less likely when the patient has moderate or severe symptoms (or problems) to begin with, especially for those with distress from fatigue and breathing problems, as is reflected in the 60% target for the national benchmark, outcome results observed and Figure PCOC6:

  • Around 90% of palliative care phases remained in the absent/mild phase at the end of the palliative care phase ─ pain severity (89%); distress from pain (88%), distress from fatigue (87%), distress from breathing problems (94%), and family/carer problems (88%) ─ thereby reaching (or just below) the benchmark of 90% (Benchmarks 3.1, 3.3, 3.5, 3.7, 3.9).
  • Around 60% of palliative care phases that began with moderate or severe pain reduced to absent/mild by the end of the palliative care phase (62% for pain severity and 57% for distress from pain), which was above or just below the benchmark goal of 60% (Benchmarks 3.2, 3.4).
  • Less than half of those starting with moderate or severe distress from fatigue or breathing problems reduced to absent/mild phase at the end of the palliative care phase (47% and 50%, respectively), which was well below the benchmark of 60% (Benchmarks 3.6, 3.8).

Figure PCOC.6: PCOC palliative care outcome results episodes/phases) for each benchmark, by care setting, 2020

Vertical bar chart showing PCOC palliative care outcome results for each benchmark, by inpatient, community, and total care settings. Benchmark 1, 98.4% of episodes/phases in inpatient settings, 86.9% in community settings, and 92.8% in all care settings; Benchmark 2, 90.1%, 86.2%, and 88.4%; Benchmark 3.1, 92.0%, 85.6%, and 88.6%; Benchmark 3.2, 63.3%, 60.2%, and 61.7%; Benchmark 3.3, 90.6%, 85.4%, and 87.6%; Benchmark 3.4, 58.8%, 55.8%, and 57.3%; Benchmark 3.5, 92.1%, 82.9%, and 87.2%; Benchmark 3.6, 54.9%, 42.2%, and 47.3%; Benchmark 3.7, 95.5%, 93.0%, and 94.2%; Benchmark 3.8, 54.0%, 45.9%, and 49.8%; Benchmark 3.9, 93.9%, 82.9%, and 88.3%; Benchmark 3.10, 55.9%, 51.4%, and 53.0%. Refer to Table PCOC.11.

Source data: Palliative care outcomes Table PCOC.11 

Palliative care outcomes during COVID-19

The COVID-19 pandemic was anticipated to impact palliative care outcomes in a number of ways, including disruption in service delivery and increased demand of palliative care related resources such as palliative care specialists and medications (WHO 2020).

Between 2019 and 2020, the duration of palliative care episodes and the benchmark outcomes were relatively similar. This suggests that the pandemic-related restrictions and activities during 2020 did not appear to have a large impact (as observed in these data) on palliative care outcomes. During 2020, certain Australian states were more affected by pandemic-related restrictions and lockdowns, which may result in differences that are not able to be observed in these data. More data over a longer period of time, and including patients experiencing COVID-19 who received palliative care, will provide new insights on the effects of the COVID-19 pandemic on palliative care outcomes.