National palliative care measures

This measure is about ensuring that the carers of people with life-limiting illnesses get the support they need. Carers need support to help them provide care in a manner that also promotes their own health, wellbeing, and personal aspirations.

The only national data currently available to describe carers’ experience is through the experience of the person with a life-limiting illness. This may not accurately reflect how well supported a carer feels.

The desired outcome for this measure is that more carers have the support they need, meaning the measure will increase.

Objective area: Appropriate    Outcome area: Carer wellbeing

Trends

In 2018, people with life-limiting illnesses experienced improved or maintained low levels of family or carer problems in 75.0% of palliative care phases. This measure remained similar over the following 6 years (74.8% in 2024), noting a slight decrease during the COVID-19 pandemic.

Note, these findings should be interpreted with caution as the number of services participating in PCOC increased between 2018 and 2024 (see Data sources for more information).   

Characteristics

In 2024, the proportion of palliative care phases for which family or carer problems improved or remained at a low level after intervention, varied by some characteristics and not others. Note, these findings should be interpreted with caution as the representativeness of the PCOC data collection across different demographic characteristics is unknown (see Data sources for more information).

Figure 3.2.2 highlights that the proportion of palliative care phases for which family or carer problems improved or remained at a low level over the phase was:

• Slightly lower for males (73.9%) when compared with females (75.8%).
• Generally increasing with age from 68.5% for those aged 0–14 to 77.1% for those aged 85 and over. It is important to note that the younger age groups had substantially smaller denominators compared with the older age groups.   
• Higher among people with non-cancerous diagnoses (77.1%) than cancer diagnoses (73.7%).
• Similar for people living in areas of varying disadvantage (ranging from 74.1% to 75.9%).
• Highest among people from Remote areas (77.6%) and lowest among those from Very remote areas (68.8%). 
• Higher among people in inpatient settings (79.7%) than community settings (70.1%).
• Highest for unstable phases (77.4%) and lowest for stable phases (71.8%).
• Highest for phases where family or carer problems were mild at phase start (85.2%) and lowest where family or carer problems were moderate at phase start (55.7%).

See Data tables for more detailed notes.