Specialist palliative care use for older people receiving aged care

This report focusses on services received towards the end of life, specifically within 12 months prior to death. It aims to generate insights into end-of-life care, in particular what services are received, when each service was initiated (expressed as days before death), and whether these vary by patient characteristics (such as age, sex, end-of-life disease trajectory, or care settings).

To identify services within the last year of life, hospital, aged care and community-based records of all people aged 65 to 114 years who died from predictable deaths (not sudden deaths) in 2021–22 were examined for the period 1 July 2020 to 30 June 2022 (based on service date and age at time of death).

While aged care, MBS and NDI data are available for all states and territories, the analysis using these datasets excluded WA and NT to ensure accurate comparisons with the hospital data (see Appendix A). Records where sex was missing/indeterminate were also excluded.

The resulting study population included 132,000 people aged 65 and over (specifically, aged 65–114 years) who died from underlying cause of predictable deaths in 2021–22.

This section provides an overview of how these services, and the analysis variables are defined in this report.

Aged care services

People commonly use multiple types of aged care services as their care needs change or different services become available. This report focuses on residential aged care and home care, as these are the mainstream government-subsidised aged care programs accessed by older people with moderate to high care needs. These programs provide support and care to individuals at different stages of decline and ageing. 

Home care (through Home Care Packages Program) provides support to people living at home, enabling them to remain independent for longer. Services are offered in packages of care, which can consist of personal care and domestic support, as well as clinical and allied health services. There are four levels of care to support those with basic (Level 1), low (Level 2), intermediate (Level 3) and high (Level 4) care needs.

Residential aged care provides 24-hour support for people with higher care needs who can no longer live safely at home. It includes accommodation (bedding and other furnishings, meals, laundry, social activities), personal care (bathing, showering, toileting, dressing, eating, moving about), and nursing and allied health services if required. Residential aged care can be provided on a permanent basis, or a short-term basis for respite or emergency support.

To reflect the continuum of aged care service use and ensure clear categorisation, individuals in the study population were assigned to three mutually exclusive categories based on a hierarchical classification of aged care service use in the 12 months prior to death. This approach accounts for individuals who may have accessed multiple types of care, assigning them to the category representing the highest level of care received, according to the following hierarchy:

1. residential aged care: Individuals who spent any time in permanent residential aged care during the 12 months before death were classified in this category, regardless of whether they also used home care or residential respite care.
2. community-based aged care:Individuals who were not living in residential aged care during the period but accessed government-subsidised aged care services in the community were further classified into two mutually exclusive subcategories, reflecting an increasing level of care need:
   1. residential respite care: Individuals who used respite care in residential aged care and did not live in residential aged care, regardless of whether they also used home care.
   2. home care: Individuals who used home care and did not live in residential aged care or use residential respite care.
3. none of these selected aged care services: Individuals who did not live in residential aged care, use residential respite care, or use home care in the 12 months prior to death were classified as receiving none of these selected aged care services.

This classification ensures that each individual is assigned to a single category, reflecting their highest level of aged care use, and supports analysis of care trajectories across the aged care continuum.

Of the 132,000 people in the study population, 41% were living in residential aged care, 5% used residential respite care, 10% used home care and 44% did not use these aged care services in the last year of life (see Data tables: Table 1).

This analysis excludes other aged care services in the community, such as home support (through Commonwealth Home Support Programme) and flexible care types (e.g. transition care, short-term restorative care).

Specialist palliative care services

Specialist palliative care services are comprised of multidisciplinary teams with specialised skills, competencies, experience, and training to deliver care to people where the palliative needs are complex and persistent. These services are provided in a variety of settings, including specialist inpatient consulting services, specialist inpatient care, hospices, and community-based specialist services. 

In this report specialist palliative care services include:

• palliative-care related hospitalisations (in public hospitals) where palliative care was a component of the care provided during all or part of the episode. This includes care type of palliative care or diagnosis of palliative care (Z51.5) for care type other than palliative care. Referred to as admitted patient care or hospitalisations.
• outpatient clinic services for palliative care medical consultations (in public hospitals), usually delivered by a palliative medicine specialist or medical practitioner providing palliative care (outpatient clinic type tier 2: 20.13). Referred to as non-admitted patient care or outpatient clinic services.
• Medicare-subsidised services provided by a palliative medicine specialist/physician using Medicare service provider specialty codes 043 or 077. Referred to as Medicare-subsidised palliative care services.

The definition of specialist palliative care in this report is focussed on care delivered by palliative medicine specialists/physicians in various settings – admitted and non-admitted patient hospital services, and community-based MBS-subsidised services. 

End-of-life disease trajectories

Variations in methodology

Note that the approach used in this report for estimating palliative care need and end-of-life disease trajectories differs from the approach used in the AIHW 2024 Palliative care and health service use for people with life-limiting conditions report. A review of the various population-based palliative care need methods by Morin et al 2017 found that the INSPQ/ONFV approach was broader and more inclusive in the range of life limiting illnesses when compared with other methods (such as the Rosenwax and Murtagh approaches; see AIHW 2024). It also has the advantage of aligning with clinical models of palliative care need based on disease progression and functional decline.

This report has also used the Murray et al. 2005 conceptual model for identifying disease trajectories rather than the Seow et al. 2018 empirical trajectory framework used in the AIHW 2024 report. The Murray model is better suited for understanding how different illnesses progress towards death and guiding when to initiate palliative care (i.e. timing and models of care), while the Seow framework is more focussed on service use, demand and complexity.

Limitations with mortality data for identifying palliative care need

Using cause of death approaches may not always be an accurate reflection of diagnosis, which is a major consideration in referral for palliative care. Mortality studies may not capture the illness trajectory over a longer period, including that palliative care services required in the last few weeks of life may differ to those needed earlier in the illness trajectory that may extend over many years. Further, mortality approaches rely on accurate reporting of causes of death on the death certificate, which is particularly challenging for older people with multiple complex comorbidities. 

Analysis variables

Place of death

Place of death is presented for 3 settings of care – people who, at the time of death, were in hospital (while admitted in hospital or in emergency department), residential aged care, or other settings. Other settings capture all deaths (from total deaths) that did not occur in hospitals, emergency departments or residential aged care. Where an individual has a different place of death recorded across the datasets in the NHDH, a set of hierarchical rules were developed with priority given to:

1. emergency department
2. admitted in hospital
3. residential aged care
4. other settings. 

In this report, people who died in emergency departments were grouped with people who died while admitted in hospital to preserve confidentiality (due to small counts).

Time from receipt of service to death

To identify when a specified service, for example, ‘any specialist palliative care’, was initiated, the number of days from the ‘first receipt’ of this service (in the last year of life) to death were calculated. These events are presented, as:

• the median number of days from ‘receipt of first service’ to death
• the prevalence: the percentage that received this service in the year prior to death
• the incidence rate: the total number of ‘first receipt’ events divided by the total number of ‘person-days-at-risk’ (expressed as a number per 100,000 person-days). For each person, the ‘days-at-risk’ start 365 days before death and end either with the ‘first receipt’ date, or the date of death. 

Note, hospital data was based on date of admission and not date of separation or discharge.

Socioeconomic status

The Socio-Economic Indexes for Areas (SEIFA) Index of Relative Socio-Economic Disadvantage (IRSD) was used to understand the relative disadvantage of an area and compare characteristics between areas. The IRSD was developed by the Australian Bureau of Statistics (ABS) and represents the socioeconomic position of Australian communities. It summarises a range of information about the economic and social conditions of people and households within an area. This includes measuring aspects of disadvantage, such as low income, low educational attainment, high unemployment, and jobs in relatively unskilled occupations. Areas are then ranked by their level of disadvantage. 

In this report, people living in the 20% of areas with the greatest overall level of disadvantage are described as living in the ‘most disadvantaged areas’. The 20% of people at the other end of the scale – those living in areas with the least overall level of disadvantage – are described as living in the ‘least disadvantaged areas’.

Note that the IRSD reflects the overall or average socioeconomic position of the population of an area; it does not show how individuals living in the same area might differ from each other.