Mind the Data Gap: We can’t improve what we don’t measure
Planning and identifying unmet and emerging needs for palliative care requires demographic and service data. There is currently inadequate data about palliative care, particularly as it relates to those also accessing aged care services.
Data relating to palliative care in residential aged care is limited by the data provided via the Aged Care Funding Instrument (ACFI) program. The ACFI is a tool used to assess and provide basic information on the care needs of a person in permanent residential aged care and to determine levels of government funding. Funding for palliative care under the ACFI is provided specifically for ‘end of life’ where the definition of end of life is referenced as the ‘last week or days of life’ which only enables providers to claim for a:
‘Palliative care program involving End of Life care where ongoing care will involve very intensive clinical nursing and/ or complex pain management in the residential care setting.’ 
Due to this narrow definition of palliative care, PCA believes that the number of ACFI claims involving palliative care is significantly lower than the total number of residents in residential aged care requiring palliative care. Also, if a resident is already on the maximum ACFI claim, providers may not claim for palliative care as it is not possible to increase the subsidy payable in this situation.
Between July 2012 and June 2014, 80% of people aged over 65 who died had used an aged care program sometime before their death
There is no data available in the Home Care Packages (HCP) Program or the Commonwealth Home Support Programme (CHSP) on the input of specialist palliative care or if providers used funds for services relating to palliative care needs.
The 2018 National Palliative Care Strategy recognises the importance of data in strengthening the delivery of palliative care. Goal 6 of the strategy focuses on data and evidence, noting that robust national data and a strong research agenda strengthen and improve palliative care. The strategy states that a lack of consistent collection and reporting of data on palliative care has been identified as an area for improvement at both state/territory and national levels. The data priorities of Goal 6 include:
- Nationally consistent data collection is used to monitor, evaluate and report on access to and outcomes of palliative care.
- Palliative care providers contribute to data collection, monitoring and reporting activities.
- Data collection and reporting inform continuous quality improvement of palliative care.
These priorities could be further supported by the development of a palliative care National Minimum Data Set (NMDS). This dataset would allow for the collection of uniform data and reporting at a national level. Aged care should be included in planning for a palliative care NMDS.
A National Palliative Care Commissioner could play a significant role in encouraging the development of a palliative care data collection framework that includes aged care. We will discuss the role of a National Palliative care Commissioner in more detail in the coming weeks when we explore the Palli8 plan’s eighth recommendation ‘Palliative Care must be a priority for all governments.
 Australian Government Department of Health (2016) Aged Care Funding Instrument User Guide, accessed at: https://www.health.gov.au/resources/publications/aged-care-funding-instrument-acfi-user-guide
 Australian Institute of Health and Welfare 2018. Cause of death patterns and people’s use of aged care: A Pathway in Aged Care analysis of 2012–14 death statistics. Cat. no. AGE 83. Canberra: AIHW