Overview of patients, episodes of care and phases
Box 1: Palliative care patients
PCOC defines a patient as a person for whom a palliative care service accepts responsibility for assessment and/or treatment as evidenced by the existence of a medical record.
In 2023, among the 70,100 patients receiving palliative care from the 200 services participating in PCOC:
- males accounted for over half (52%)
- more than 3 in 5 (63%) had a diagnosis of cancer (Figure 1)
- 1 in 2 (50%) died – of these 69% died in hospital, 18% at home and 11% in residential aged care.
For further details on the characteristics of these patients, see Tables 1–3.
Box 2: Palliative care episodes
A palliative care episode is a period of contact between a patient and a service provider where palliative care is provided in a single setting (inpatient or community setting).
An episode starts on the date a comprehensive palliative care assessment is undertaken and documented.
An episode ends or is closed when the following occurs:
- setting of palliative care changes (for example community to inpatient)
- principal clinical intent of the care changes and the patient is no longer receiving palliative care
- the patient is formally separated from the service
- the patient dies.
A patient may have multiple palliative care episodes over the reference period if a patient’s care needs change, they no longer require palliative care, or they change settings. For example, if a patient receives care at home and then transitions to care in a hospital, this would be reflected as 2 separate episodes.
Palliative care episodes, as used in this report, include both open episodes (those without an episode end date in the reporting period), and closed episodes (those with an episode end date in the reporting period), unless otherwise specified.
In 2023, there were 90,800 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 slightly more episodes in inpatient settings than in community settings (for example, at patient’s home or aged care) – 47,100 compared with 43,700, respectively (Table 1)
- median age at episode start was 77 years (Table 4)
- 57% of referrals were from public hospitals, followed by 9% from private hospitals, and about 8% each from community palliative care services and general practitioners (Figure 1).
There were 85,400 episodes that ended (closed episodes) in 2023. Among these closed palliative care episodes (Table 7):
- 3 in 4 (75%) ended within 30 days, with most ending within 2 weeks (61%)
- inpatient episodes were generally shorter in duration than community episodes – with a median duration (elapsed days) of 4 days compared with 23 days:
- the proportion of inpatient episodes that ended within 2 days was 3.7 times as high as for community episodes (36% vs 9.6%). For episodes that ended within 14 days, inpatient episodes were 2.5 times as high (84% vs 34%, respectively)
- the proportion of community episodes that ended 15 days or after was 4.1 times as high as for inpatient episodes (66% vs 16%). It was 10 times as high for episodes that ended 31 days or after (48% vs 4.8%, respectively).
- 1 in 2 (52%) inpatient episodes ended with the patient dying compared to 28% for community episodes. The most common reason for community episodes ending was the patient being admitted into inpatient care, accounting for 1 in 2 (52%) episodes (Table 6).
Box 3: Palliative care phases
A palliative care phase in PCOC identifies a clinically meaningful period in a patient’s condition, their functional ability, symptoms (including physical and psychological) and family/carer distress, using five brief clinical assessment tools. It is determined by a holistic clinical assessment which considers the needs of the patients, and their family and carers.
There are four types of palliative care phases included in PCOC:
- Stable: patient problems and symptoms are adequately controlled by an established plan of care, and
- further interventions to maintain symptom control and quality of life have been planned, and
- family/carer situation is relatively stable, and no new issues are apparent.
- Unstable: an urgent change in the plan of care or emergency treatment is required because:
- patient experiences a new problem that was not anticipated in the existing plan of care, and/or
- patient experiences a 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:
- patients overall functional status is declining, and/or
- patient experiences a gradual worsening of existing problem, and/or
- patient experiences a new but anticipated problem, and/or
- family/carers experience gradual worsening distress that impacts on the patient care.
- Terminal: death is likely within days (Masso et al. 2015; PCOC 2021).
Note 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.
In 2023, there were 203,600 palliative care phases recorded in PCOC – 101,300 (49.7%) in inpatient settings and 102,300 (50.3%) in community settings. On average, patients had 2.4 phases per closed episode (2.2 in inpatient settings compared with 2.6 in community settings) and 2.9 phases per patient (Table 1).
Among these palliative care phases (Figure 1 and Table 8):
- 4 in 10 (42%) were deteriorating phases and 3 in 10 (31%) were stable phases, followed by terminal (16%) and unstable (11%) phases.
- The proportion of stable phases was higher in community settings than in inpatient settings (37% vs 25%); conversely, the proportion of terminal phases was higher in inpatient settings than in community settings (23% vs 8.3%).
- The average length of phase was longer for those in community than in inpatient settings, particularly for those in stable and deteriorating phases. Duration of the phase was about 4 times and 3 times as long for those in community settings than in inpatient settings – 23 days vs 5.5 days for stable phase and 15 days vs 4.7 days for deteriorating phase, respectively.
Figure 1: Overview of patients, episodes of care and phases in services participating in PCOC, 2023
Figure 1: This dashboard presents diagnoses of patients, referral source and length of episodes and types of phases in services participating in PCOC in 2023.
References
Masso M, Allingham SF, Banfield M, Johnson CE, Pidgeon T, Yates P et al (2015) ‘Palliative Care Phase: inter-rater reliability and acceptability in a national study’, Palliative Medicine, 29(1): 22–30.
PCOC (Palliative Care Outcomes Collaboration) (2021) Palliative Care Outcomes Collaboration Clinical Manual, University of Wollongong website, accessed 24 June 2024.