Communities step up where systems fall short: calling for a Compassionate Communities Approach to ageing, dying and grieving.
Communities carry the greatest responsibility of care — providing 95% of the support for people who are caring, dying, and grieving. Research shows that strong community partnerships with formal services are vital to addressing Australia’s growing challenges related to ageing, caregiving, end-of-life, and loneliness. [1 & 2]
Yesterday, over 200 representatives from local governments, health care providers, workplaces, and community groups across the country gathered at the Compassionate Communities Australia (CCAus) 2025 Forum, (The Edge — State Library Queensland) to share experiences, collaborate and create Advocacy Statements as a call-to-action to the government, workplaces, health services and community groups.
“The Advocacy Statements are a call-to-action and a commitment to strengthen and sustain Compassionate Communities and improve collaboration with formal services and civic organisations, recognising the important social and human aspects of care,” said Professor Samar Aoun AM, Chair of CCAus, Perron Institute Research Chair in Palliative Care at the University of WA, and 2023 WA Australian of the Year.
“When informal community networks work in partnership with formal health and social services, we can create a future where no one faces illness, dying, or grief alone.” “Policy and system changes are needed because existing structures have an entrenched resistance to change when new approaches are necessary to effectively meet people’s needs,” Dr Aoun said.
Roundtable discussions at the Forum produced the call-to-action Advocacy Statements designed to spark system innovation, define essential community partnerships, and boost support for community-led care in seven settings:
• Health Services: To work with communities by managing rather than avoiding risk to enable community-led initiatives to become integrated in their practice.
• Workplaces: To instil workplace and system-wide policy changes, such as accommodating return-to-work needs and increasing paid bereavement leave.
• Local Government: To embed compassionate governance in legislation & planning and normalise Compassionate Communities as core practice.
• Diversity and Equity: To co-create and invest in partnerships that improve equitable access to culturally and socially sensitive care, where everyone is seen and valued throughout life and death.
• Home: To enhance the community’s confidence and skills through death and grief literacy educational programs, to support death at home (if that is the choice).
• Aged Care: To ground residential aged care in dignity, connection, and community– not just clinical care. Residents need to be cared ‘about’, not just cared ‘for’.
• Hospices: To co-create compassionate care in true partnership with families, their extended networks, and the wider community – walking at their pace, offering choice, flexibility, and nurturing connection beyond the hospice walls.
Forum speaker Dr Stephen Ginsborg, a General Practitioner and CCAus board director has experienced how our increasingly medicalised health system, while providing many excellent services, has never fully embraced the importance of social networks and connections when it comes to care and the process of healing.
“Who’s got my back? is a question everyone can ask themselves to plan and ensure that they have community support to live, care, die and grieve well at home,” Dr Ginsborg said as he addressed Forum attendees.
Prof Ben White of Queensland University of Technology (End-of-Life Law and Regulation) called for rethinking regulation and compliance that are undermining community-led initiatives. “The goal needs to promote positive outcomes which include better access to services and support, and fairer outcomes for people,” Prof White said.
International guest speaker Professor Allan Kellehear OBE, (Compassionate Communities UK and Northumbria University UK) one of the founders of the Compassionate Communities approach to care, addressed the barriers and obstacles in compassionate communities. “Community initiatives too often get overlooked and mistaken for services rather than genuine community development that can successfully implement system change”, Professor Kellehear said.
The second international guest speaker Prof Luc Deliens (President of Public Health Palliative Care International and VUB Compassionate University of Brussels) presented on the global development of Compassionate Communities, and the vital role of volunteers. “Volunteers and neighbours are activated citizens and are the treasures of Compassionate Communities whose spirit we must reawaken, they play a very key role in compassionate care,” Professor Deliens shared.
At the Forum, the CCAus team announced the creation of a National Resource Hub as a next step to strengthen and leverage Compassionate Communities efforts. This initiative is the first-of-its-kind and will centralise practical knowledge, making resources easy to access and prevent duplicating work — saving communities valuable time and resources. Funded by the Wicking Trust, the Resource Hub will serve as a comprehensive repository of tools, guides, and real stories, sharing knowledge and fostering vital connections between practitioners nationwide to ensure no one faces dying, caring, or grieving alone.
Professor Aoun has urged the government, decision makers and leaders to stand with Compassionate Communities Australia to drive compassion, creativity and innovation to tackle Australia’s pressing challenges — namely, the gap in community connection at the heart of care.
“It is clear from the recent report of Inspector General Natalie Siegal-Brown that efforts to implement recommendations of the Royal Commission have fallen short, in particular, ensuring access to the social, emotional and spiritual care essential to many people’s wellbeing and their ability to age with dignity.
This is where a shift to a collaborative Compassionate Communities model of care is a necessity. Ageing at scale requires a whole of community response.” Prof Aoun said.
Media Contact: Cherelle Danker Tel: 0450451058 Email: admin@compassionatecommunities.au
Media Release: 10 September 2025
————————————————————————————————————————
References and background information
1. Aoun SM, Richmond R, Gunton K, Noonan K, Abel J, Rumbold B. The Compassionate Communities Connectors model for end-of-life care: implementation and evaluation. Palliat Care Soc Pract. 2022 Nov 30;16:26323524221139655.
2. Aoun SM, Bear N, Rumbold B. The Compassionate Communities Connectors program: Effect on healthcare usage. Palliat Care Soc Pract. 2023 Oct 26;17:26323524231205323.
3. Wallace E. Demand for palliative care services expected to surge as number of Australians aged over 85 grows. ABC News. 2024 Apr 14 [cited 2025 Jul 23].
4. Aoun SM. (2022). Supporting the dying is a community responsibility. Editorial in Palliative Care and Social Practice. 2022, Vol. 16: 1–4. DOI: 10.1177/26323524221102468
5. Palliative Perspectives article— https://www.caresearch.com.au/About-Us/Newsroom/Palliative Perspectives/Palliative-Perspectives-Blog-Details/ArtMID/17907/ArticleID/5886/Reframing-palliative-care A-call-to-action-for-a-Compassionate-Communities-approach