Lived experience to inform palliative care programs nationwide
A new national program centring the voices of Australians to improve end-of-life care systems has received a grant from the Wicking Trust.
The ‘VOICES’ for Palliative Care program will integrate lived experience into national programs and discussions on advanced illness care.
The program is led by Dr Anna Collins, Senior Research Fellow with Professor Jennifer Philip's Palliative Nexus team at the University of Melbourne and Collaborative Centre for Genomic Cancer Medicine, a joint venture of the University of Melbourne and Peter MacCallum Cancer Centre.
VOICES is a consumer-led collaborative of 15 members each with a lived experience of serious illness or caregiving who are committed to improving the relevance, quality and patient-centeredness of end-of-life care.
The program has been developed as a partnership between the University of Melbourne, St Vincent’s Hospital, Royal Melbourne Hospital and Flinders University alongside numerous community and government stakeholders.
Dr Collins said that the program responds to evidence which highlights the need to transform current health systems in line with consumer priorities.
“VOICES arose from the shared recognition that consumer involvement in end-of-life initiatives is currently the exception, not the rule,” said Dr Collins.
“It was co-designed by consumers, following robust stakeholder engagement with professionals, service leads, and experts, to build more person-focused systems and change conversations to empower those facing serious illness.
“Thanks to support from the Wicking Trust, we will expand the work of VOICES nationally to address barriers to consumer involvement in palliative care and empower the workforce with the knowledge and skills to integrate these vital voices.”
“We’ll bring the voices of those with lived experience to the center of all initiatives across the sector to deliver more positive experiences of wellbeing and personhood for Australians at the end of life.”
The Wicking Trust, managed by Equity Trustees, announced $7 million funding for 20 projects over the next three years for collaborators dedicated to reshaping the way Australians experience death and grieving.
The funding aims to address systemic challenges faced by Australians at the end of life and cover communities across the country – ranging from AI-assisted advanced care planning tools and grief support to more culturally-sensitive end-of-life care and planning tools.
“The Wicking Trust’s goal is to create a more cohesive and inclusive system that prioritises care alongside cure, ensuring that death, dying and grief are acknowledged as natural parts of life and that all Australians have access to a dignified and supported end-of-life experience,” says Susie Meagher, Ageing and Social Impact Specialist, Equity Trustees.
“The Wicking Trust is committed to supporting systemic change to ensure all Australians experience death as a recognised, supported, and valued part of life,” she says. “These grants will help shift the conversation and improve access to compassionate and informed end-of-life care, planning, and support.”
“John and Janet Wicking were generous in life and in death. They were committed to a path of dignity in ageing and dying. By partnering with organisations working to ‘bring death back into life’ we hope to honour their wishes and legacy and begin a long and inclusive conversation with Australian communities.”