Palliative care outcome measures
The Australian Palliative Care Outcomes Collaboration (PCOC) is a national program that uses standardised validated clinical assessment tools to benchmark and measure palliative care outcomes. PCOC’s palliative care outcomes program helps improve patient and carer outcomes and drives improvements in the quality of palliative care.
Box 1: 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 (for example, as achieved by the top 20% of services). The purpose of benchmarking is to drive palliative care service innovation and provide participating services with the opportunity to compare their service to other services from across the country.
The PCOC outcome measures cover:
- Time from date ready for care to episode start – it is intended to assess whether patients received timely palliative care in response to need. It is calculated in days between the date the patient is ready to receive palliative care to the date that the palliative care episode starts.
- Time in the unstable phase – it is intended to assess whether there was a timely resolution of unstable palliative care phase. It is calculated as the difference between the unstable phase start date and end date.
- Change in symptoms/problems – it is intended to provide information about the responsiveness and appropriateness of the care plan in place and therefore the care provided. It is calculated by the difference in assessment from the beginning of a phase to the end of phase and is calculated using the measures from both the Palliative Care Problem Severity Score (PCPSS) and PCOC Symptom Assessment Scale (PCOC SAS).
A full description on each of PCOC outcome measures and benchmarks reported in this chapter is included in Data source.
In 2023, the data on 90,800 palliative care episodes and 203,600 palliative care phases recorded in PCOC revealed the following key findings on palliative care outcomes (Figure 2):
- Over 9 in 10 (93%) episodes commenced on the day the patient was ready for palliative care or the day following – 97% in inpatient settings and 87% in community settings.
- Almost 9 in 10 (86%) unstable phases lasted for 3 days or less – 91% in inpatient settings and 80% in community settings.
- About 9 in 10 palliative care phases that started with absent/mild symptom/problem remained absent/mild at the end of the palliative care phase – 88% each for pain severity, distress related to pain, fatigue, and family/carer problems. 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 fatigue, breathing problems and family/care problems:
- About 3 in 5 palliative care phases that began with moderate or severe patient pain was reduced to absent/mild by the end of the palliative care phase – 62% for pain severity and 58% for distress from pain.
- Over 1 in 2 palliative care phases starting with moderate or severe distress from fatigue, breathing problems or family/care problems was reduced to absent/mild at the end of the palliative care phase – 52% for fatigue, 53% each for breathing problems and family/care problem.
Box 2: Palliative care case-mix adjusted outcome measures and benchmarks
Case-mix adjusted outcomes measure the changes in symptoms relative to the national average. It allows services to compare the changes in symptoms and problem scores for ‘like’ patients (patients in the same phase who started with the same level of symptoms). It is calculated by measuring the mean change in symptoms on both Palliative Care Problem Severity Score (PCPSS) and PCOC Symptom Assessment Scale (PCOC SAS), after adjusting for both phase and the symptom score at the start of each phase.
The PCOC palliative care case-mix adjusted outcome measures include eight symptoms/problems:
- Four clinical reported problem severity using PCPSS, including pain, other symptoms, family/care problems and psychological/spiritual problems.
- Four patient reported symptom distress using PCOC SAS, including pain, nausea, breathing problems and bowel problems.
A case-mix adjusted score is calculated by comparing the change in symptoms/problems to patients at baseline national average level (January to June 2014). A positive score indicates that a service is performing above the baseline national average and a negative score indicates that it is below the baseline national average.
A full description on each of case-mix adjusted outcome measures and benchmarks reported is included in Data source.
In 2023 (Figure 2):
- On average, services in all settings (inpatient and community settings combined) and in inpatient settings were performing above the baseline national average on all 8 case-mix adjusted outcome measures.
- In community settings, on average, services were performing below the baseline national average on 2 case-mix adjusted outcome measures (clinician reported pain severity and patient reported distress from pain); for the other 6 measures, the services were performing above the baseline national average.
Figure 2: Palliative care outcome results in the services participating in PCOC, 2023
Figure 2: This dashboard presents results and benchmarks of palliative care outcomes and casemix adjusted outcomes in services participating in PCOC in 2023.
