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 (recorded in the PCOC data collection). This decreased slightly to 73.6% in 2022. This decrease occurred over the COVID-19 pandemic which may have impacted on how people were accessing and receiving palliative care services, and their outcomes during this period. Note, these findings should be interpreted with caution as the number of services participating in PCOC increased between 2018 and 2022 (see Data sources for more information).  

Figure 3.2.1: Proportion of palliative care phases for people with life-limiting illnesses for which family or carer problems improved or remained at a low level after intervention, 2018-2022

Characteristics

In 2022, 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 (72.6%) when compared with females (74.7%).
• Generally increasing with age from 63.2% for those aged 0–14 to 75.6% for those aged 85 and over.
• Slightly higher among people with non-malignant diagnoses (75.8%) than malignant diagnoses (72.6%).
• Similar for people from varying socioeconomic areas (ranging from 73.1% to 74.1%).
• Highest among people from Very remote areas (78.9%) and lowest among those from Inner regional areas (72.3%).
• Higher among people in inpatient settings (80.2%) than community settings (68.0%).
• Similar for unstable, deteriorating, and terminal phases (ranging from 75.0% to 75.7%) but lower for stable phases (70.5%).
• Highest for phases where family or carer problems were mild at phase start (83.6%) and lowest where family or carer problems were moderate at phase start (53.7%).

Figure 3.2.2: Proportion of palliative care phases for people with life-limiting illnesses for which family or carer problems improved or remained at a low level after intervention, by selected characteristics, 2022