BLOG: Landmark ACP Prevalence Research Project wraps up

When I commenced my role at Advance Care Planning Australia in 2016, I was surprised to learn that there was no national data set, making it impossible to track the uptake of advance care planning (ACP) documents and growth over time.  

A milestone event for our program was the commencement of the Prevalence of Advance Care Planning Documentation in Australian Health and Residential Aged Care Services research project in 2017.  
The project objectives were to provide insights into the prevalence of ACP documents for older Australians, as well as other end-of-life planning documents such as medical orders, goals of care and documents completed by someone else on behalf of a person without capacity.

This month marks another milestone event for ACPA, with the release of the final study manuscript from this landmark national health data set. In total this project has achieved 12 research papers which together have brought into sharper focus the status of ACP in Australia, highlighting key gaps and weaknesses and identifying opportunities for improvement.  

Importantly, these findings have informed recommendations to the Royal Commission in to Aged Care and have provided ACPA with a strong platform to drive evidence-based policy advocacy.

Overall we found that: 

  • ACP was not a routine part of care for older Australians

  • only 29% of older Australians had any type of ACP document

  • only 14% of older Australians had a legally-binding advance care directive (ACD)

  • only half of people who thought they had documentation actually did

  • having previously discussed ACP with others or a doctor was a significant predictor of having documentation

  • legally-binding ACDs were more prevalent among people born in Australia

  • ACP documents completed by others (non legally-binding) were more prevalent among people not born in Australia

  • for people with dementia a third had completed a legally-binding ACD and a third had documentation completed by someone else (non legally-binding)

  • being in residential aged care was the biggest predictor for having documentation, which was found for 38% of residents.

The project provided us with the opportunity to work with some of the most distinguished ACP and end-of-life researchers in Australia, including Associate Professor Karen Detering, Dr Craig Sinclair and Professor Ben White.

We’re most thankful to the 151 participating organisations across primary care, aged care and health services, without whose support this project would not have been possible. Importantly, we had representation from every Australian state and territory which provided us with a comprehensive picture of ACP uptake across Australia.

We now turn our focus towards ensuring these important findings are used to influence health policy and decision-making. We look forward to a future where ACP is deeply embedded in our health and aged care systems so that we can make good on our promise to make ACP a routine part of care.

Linda Nolte
Program Director
Advance Care Planning Australia