Palliative care is a basic human right according to the World Health Organisation. But is it accessible to everyone, everywhere or is this still an aspiration?
Reflecting on the latest consumer survey on palliative care in Western Australia, the significant ongoing blind spots will not shift without major change.
The survey highlighted 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.
Research indicates that a solely clinical model of palliative care is inadequate to address the complex aspects of death, dying, loss and grief.
A public health approach to palliative and end-of-life care incorporates global initiatives such as Compassionate Communities working with civic organisations (including local government) and palliative care services, to enable the integration of services around families in need. This is essential to create an effective, inclusive, affordable and sustainable end-of-life care system.
Compassionate Communities are inclusive of all diseases, ages and cultures, committed to system change and a key element of a public health palliative care approach. This means the community is an equal partner in delivering care, focusing on a whole-life perspective and leveraging its assets.
The latest Australian statistics show palliative care-related hospitalisations have increased at double the rate of other hospitalisations, with the majority of people still dying in hospitals despite wanting to die at home. This adds to the increased pressure on our paid workforce and hospitals and we are approaching a time when we will not have enough of either to look after us.
According to demographer Bernard Salt, in six years, the first of Australia’s baby boomers will turn 85. The number of Australians aged 85 and over will grow by 60,000 per year by the end of the decade. A 2020 KPMG report found that by 2050, national demand for palliative care services would increase by 200 per cent. However, this pressure can be avoided by a change in approach to care.
About 95 per cent of the care of the dying is done by families and an individual’s support network and less than five per cent of total care is provided by healthcare services — highlighting that while health services are essential, they are not central.
For palliative care to be accessible to everyone and everywhere, the community needs to own its central role in contributing to quality healthcare, which will lead 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.
This approach involves identifying local assets and engaging a range of stakeholders — including neighbourhoods, workplaces, schools, service clubs, local government and places of worship — to create social and practical networks of support for people experiencing social isolation, chronic health issues, life-limiting illnesses and caregiving responsibilities.
A Compassionate Connector trial undertaken by the South West Compassionate Communities Network in partnership with WA Country Health Service (2019-2022) has provided the significant evidence behind this approach.
The program used community volunteers, called Compassionate Connectors, to facilitate the provision of practical and social support to people dealing with chronic and life-limiting illnesses. The Connectors were screened, had relevant personal experiences and participated in training on mobilising and developing caring networks.
They supported people referred by the health service to identify and mobilise their community assets, such as 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, organising meals, having regular chats and linking people to community activities.
Notably, for the people with life-limiting illnesses in this program, around 80 per cent of unmet needs were in the social domain, followed by home and transport issues, medical care and preparation for the end of life.
As nearly half of those referred were socially isolated and lived alone, most of their support came from externally facilitated networks compared to naturally occurring networks.
The trial found positive impacts for patients and family carers, including improved social connectedness, increased support networks, reduced social isolation, increased community links and improved coping with daily activities.
The impact of this community-led solution also had substantial savings to the health system. Those supported by the Compassionate Connectors had fewer hospital admissions and emergency department presentations, spent fewer days in hospital, and doubled the use of outpatient services, which are a lot cheaper.
Adopting a Compassionate Communities approach recognises that it is everyone’s responsibility and everyone’s business to ensure that compassionate support can be found in all aspects of our lives and deaths but especially when caregiving, dying and grieving knock at our door.
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.
Professor Samar Aoun AM is the Perron Institute Research Chair in Palliative Care at The University of Western Australia and 2023 West Australian of the Year.
Editorial first published in the West Australian on 15th July 2025