Reframing palliative care: A call to action for a Compassionate Communities approach
An article written by Professor Samar Aoun AM, Perron Institute Research Chair in Palliative Care, University of Western Australia
Palliative care is a basic human right according to the World Health Organization. But is it accessible to everyone? Is it accessible everywhere? Or is this still an aspiration, even here in Australia?
Reflecting on the latest consumer survey on palliative care in Western Australia, [1] the significant ongoing blind spots will not shift without a major change in our approach to care: Inequity for non-cancer conditions, inadequate family carer support, lack of grief and bereavement support, the need for better death and grief literacy for both consumers and service providers, better workforce education and training, and improved models of integrated care, all echo throughout the wider published literature.
Research indicates that a solely clinical model of palliative care is woefully inadequate to address the complex aspects of death, dying, loss, and grief. There needs to be a shift: specialist and generalist palliative care providers, civic organisations, and community networks must collaborate to create an effective, inclusive, affordable, and sustainable end-of-life care system. [2] A public health approach to palliative and end-of-life care incorporates Compassionate Communities, along with Compassionate Cities and civic organizations, as enablers for integrating services around families with life-limiting illnesses.
But what are Compassionate Communities? First, let’s define our understanding of compassion. We respond with humanity and kindness to each person’s pain, distress, anxiety, or need. We search for the things we can do, however small, to give comfort and relieve suffering. We find time for those we serve and work alongside. We do not wait to be asked because we care.
Compassionate Communities were once an aspiration but are now backed by evidence from the UK and Australia. They are inclusive of all diseases, ages, and cultures, committed to system change, and a key element of a public health palliative care approach. This approach means the community is an important partner in delivering care, focusing on a whole-life perspective and leveraging the assets within our communities.
The latest Australian statistics show that palliative care-related hospitalisations have increased at double the rate of other hospitalisations, with the majority of Australians still dying in hospitals despite wanting to die at home. This adds to the increased pressure on the paid workforce and hospitals. Surely it is time to seriously rethink care at the end of life. We are approaching a time when we will not have enough hospitals or paid workforce to look after us, when facing the tsunami of baby boomers dying in the next 20 years. According to demographer Bernard Salt, [3] in just six years, the first of Australia's baby boomers will turn 85. The number of Australians aged 85 and over will be growing by 60,000 per year by the end of the decade, up from about 20,000 in 2024. A 2020 KPMG report found that by 2050, national demand for palliative care services will increase by 200%. However, this "calamity" can be avoided by a change in approach to care. [3]
As we know, 95% of the care of the dying is done by families and an individual’s support network? Less than 5% of total care is provided by healthcare services. This highlights that while health services are essential, they are not central. How can we enable and encourage social networks to support people at the end of life? For palliative care to be accessible to everyone and everywhere, the community needs to own its central role in contributing to quality healthcare, thus leading to better quality of life and better quality of death.
The Compassionate Communities model emphasises the central role of community development and consumer engagement in partnership with formal services in the delivery of care. This approach actively involves identifying local assets and engaging a range of stakeholders—including neighbourhoods, workplaces, schools, service clubs, local government, and places of worship—to facilitate social and practical networks of support for those experiencing social isolation, chronic health issues, life-limiting illnesses, and caregiving responsibilities.
A Compassionate Connector trial undertaken by the South West Compassionate Communities Network (SWCCN) in partnership with the Health Service (2019-2022) has provided the significant evidence behind this approach. The program used community volunteers, called Compassionate Connectors, to provide practical and social support to people dealing with chronic and life-limiting illnesses. The volunteers were screened, had relevant personal experiences, and participated in training on mobilizing and developing caring networks. They supported people referred by the health service to identify and mobilize their local assets (i.e. existing networks of care) and, where gaps were identified, connected people to Caring Helpers (community citizens) along with formal health and community services. Caring Helpers provided a friendly helping hand with everyday tasks—collecting prescriptions, organizing meals, having regular chats, and linking clients to community activities.
The research associated with this trial found positive impacts on patients and family carers, including improved social connectedness, increased support networks, reduced social isolation, increased community links, improved coping with daily activities, and significant savings from reduced hospital usage. Notably, for the people with life-limiting illnesses in this program, around 80% of unmet needs were in the social domain, followed by home and transport issues (16%), medical care (12%), and preparation for the end of life (11%). With nearly half of those referred being socially isolated and living alone, most support came from externally facilitated networks (59%) compared to naturally occurring networks (26%). [4]
The impact of such a community-led solution was significant. Compared to a control group, those supported by the Compassionate Connectors had 63% less admissions to hospital, spent 77% fewer days in hospital, had 44% less Emergency Department presentations, and doubled their use of outpatient services. This is estimated to lead to significant net savings for the health service over a six-month period, an average of $518,701. [5]
Adopting a Compassionate Communities approach recognises that it is everyone’s responsibility to ensure that when caregiving, dying, and grieving knock at our door—wherever we are, and whoever we are—compassionate support will be found in all aspects of our lives and deaths. It is time to rethink and reshape end-of-life care to be more inclusive, compassionate, and community-driven, ensuring that palliative care becomes truly accessible for everyone, everywhere.
The change starts with us. By fostering compassionate communities, we can ensure that everyone, regardless of their illness or condition, receives the support they need. As our population ages and the demand for palliative care increases, we must act now. It is not only a moral imperative but a practical necessity. Together, we can create a future where palliative care is not just an aspiration but a reality for all Australians.
Let’s commit to building Compassionate Communities that will make a tangible difference in the lives of those facing life-limiting illnesses. The power to reframe our palliative care system lies in our collective hands. Let’s seize it.
References
- Aoun SM, Richmond R, Jiang L, Rumbold B. Winners and losers in palliative care service delivery: Time for a public health approach to palliative and end of life care. Healthcare (Basel). 2021 Nov 23;9(12):1615.
- Abel J, Kellehear A, Karapliagkou A. Palliative care: The new essentials. In: Abel J and Kellehear A (eds), Oxford Textbook of Public Health Palliative Care. Oxford: Oxford University Press, 2022, pp. 30–36.
- 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].
- 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.
- Aoun SM, Bear N, Rumbold B. The Compassionate Communities Connectors program: Effect on healthcare usage. Palliat Care Soc Pract. 2023 Oct 26;17:26323524231205323.
Authors
Professor Samar Aoun
Perron Institute Research Chair in Palliative Care
University of Western Australia