First published 22 May 2025
A QUT-led collaboration has received a substantial financial boost in its bid to resolve a critical knowledge gap around end-of-life care options and regulations in Australia.
Backed by a $450,000 Wicking Trust grant, the team is working towards an easily accessible one-stop resource hub, shaped by the older Australians who most need the information and support in decision making.
The three-year project, Empowering older Australians to make informed end-of-life choices through connecting system silos, will address a substantial awareness gap which research suggested ranged across the medical profession and wider community.
It is one of two QUT research initiatives included in the latest round of Wicking Trust funding, along with an innovative AI-driven grief app.
QUT Professor Ben White (QUT School of Law and chief investigator) said it was “such an important initiative”.
“Our team has found that many doctors do not know end-of-life law, while a three-year Australian Research Council linkage study into patient and community knowledge found a lack of knowledge to support people with end-of-life choices,” he said.
“You can't make decisions about what choices you want at the end of life if you don't know those choices exist, and if you don't have support to enable you to navigate it in an informed way.
“This grant provides an opportunity to work collaboratively with our partners - guided by the people who we are hoping to help. Without the funding, this work would not be possible.”
More than a decade of collaboration has already been invested in the project, featuring two QUT research centres with expertise in law and end-of-life choices – the Australian Centre for Health Law Research, and Australian Centre for Health Services Innovation. They are working alongside industry partners Go Gentle Australia, Advance Care Planning Australia and Palliative Care Australia.
The team will continue to use feedback from a consumer advisory group, one-on-one interviews and focus groups with older Australians to understand their needs and preferences, with information integrating the three key areas of advance care planning, palliative care and voluntary assisted dying.
“The best way to do this is a collaborative approach,” Prof White said.
“Historically, care in this space has sometimes been a bit siloed. But when people are dying or very unwell, they just want to know what all of their choices and options are.
“Law obviously matters but there are also health systems, health design and health communication aspects. This collaboration combines our end-of-life law expertise with health systems expertise and the industry perspective.”
Working alongside Prof White are fellow QUT academics Dr Madeleine Archer and Prof Lindy Willmott from the Australian Centre for Health Law Research; and Dr Hannah Carter and Dr Bridget Abell from the Australian Centre for Health Services Innovation.
Dr Archer, a post-doctoral Research Fellow at the Australian Centre for Health Law Research, said the resource hub would enable critical decision making and support people to know more about their choices at the end-of-life.
“Some people will want a range of things (from the website), some won't,” she said.
“Voluntary assisted dying is a good example - for some, it is a choice which brings so much peace and comfort but others may not want this choice. Others may want to learn about access to high quality palliative care and choices around advanced care planning. Some will want to know more about all of these options.”
Dr Archer said while the delivery format was yet to be finalised, it could include podcasts, videos and in-person events.
“We are engaging with older Australians - we’re really keen to find out what they need and what they're missing in terms of knowing about their end-of-life choices,” she said.
“We want to create a source of navigation support that includes information that's already out there - we don't want to duplicate that but rather we can provide a central space that can connect people to that information and more.”
- The J.O. & J.R. Wicking Trust, managed by Equity Trustees, is dedicated to improving the ageing experience and the way Australians experience death and grieving.
Main image: Prof White flanked by (from left) Dr Madeleine Archer, Prof Lindy Willmott, Dr Hannah Carter and Dr Bridget Abell.
