Picture a family in the weeks after a terminal diagnosis.
They’ve met the specialist and had the conversation about prognosis. A folder of pamphlets has been handed over.
Then they go home.
Nobody has told them which neighbour used to drop off meals when someone was dying two doors down. The local men’s shed and its quiet lawn mowing roster for families in crisis never came up. Nor did anyone explain how to ask a GP for a home visit. Nobody said when to call palliative care instead of an ambulance.
The clinical system did its job. But the human system was invisible to them. That’s the web of community, informal support and practical knowledge that surrounds a dying person. Nobody was holding the thread.
Compassionate Communities was built to close exactly this gap, and it’s one that End-of-Life Doulas are uniquely placed to fill.
What Compassionate Communities actually means
Compassionate Communities is a recognised public health approach to death, dying and grief. Health services tend to treat end of life as a purely medical event to be managed. But most of the care around dying happens outside hospitals and hospices. It happens in kitchens, on patios, in group chats, and car pools.
The approach asks a simple but radical question. What if communities, not just clinicians, took some responsibility for supporting people through death, dying and bereavement?
In practice, that means building networks of neighbours, workplaces, and schools. Also faith groups and local organisations who know how to show up when someone is dying. It means normalising conversations about death long before a crisis hits. And it means making sure those formal health services and informal community capacity aren’t operating as two separate worlds.
That last part is where things tend to fall over, because someone has actually to connect those two worlds. They need to know both what the palliative care team can offer and what Mrs Smith from number 12 is quietly already doing. Someone, in short, has to navigate.
What the evidence tells us
The best-known example comes from Frome, a market town in Somerset, UK. Between 2013 and 2017, GPs and health trainers built a web of community groups. These groups ranged from talking cafes to a local Men’s Shed. They were supported by more than a thousand trained volunteer connectors who helped people find their way to informal support.
The study published in the British Journal of General Practice tracked hospital admissions in Frome. Unplanned admissions fell by 14 per cent over the study period. Meanwhile, admissions rose by close to 29 per cent across the rest of Somerset (Abel et al., 2018).
Australia has its own emerging evidence base, and it speaks directly to the navigator argument. A Western Australian trial tested the Compassionate Communities Connectors model. Trained volunteers worked to map and mobilise the networks around families facing life-limiting illness. Compared with a control group, participating families had 63 per cent fewer hospitalisations. They also had 77 per cent fewer hospital days and 44 per cent fewer emergency presentations.
The same study estimated the model could deliver close to half a million dollars in savings for every 100 patients supported over six months (Aoun, Bear & Rumbold, 2023).
Another national project was coordinated by The GroundSwell Project across nine communities between 2018 and 2020. It found similar value in place-based, community-led approaches to end-of-life care. But it also flagged a lack of consistent, funded pathways for embedding this work long term (Horsfall et al., 2020).
The End-of-Life Doula as a natural navigator
The End-of-Life Doula role fits here, not as an add-on to the Compassionate Communities model, but as one of its most natural expressions.
End-of-Life Doulas already work at the intersection of the clinical and the personal. Doulas support people to understand their choices, plan for what matters to them, and connect with the practical and emotional resources around them. That is navigation work, whether or not it’s labelled that way.
A doula walking alongside a dying person and their family is often the one who:
- Helps a family work out what kind of support they actually want, before deciding who to call
- Knows how to bridge the conversation between a formal care team and informal community supports
- Notices the practical gaps (transport, meals, company at 3 am) that clinical services rarely have the scope to address
- Holds continuity throughout a period when a person might see a rotating cast of clinicians, none of whom hold the full picture
A doula doesn’t need to change a dressing or manage medication to matter here. Their job is not clinical. It’s noticing that Mrs Smith from number 12 has been dropping off meals for three weeks straight. They want to make sure that keeps happening once the family stops thinking to ask. There is no one in the current system who carries this job. If it’s taken away, then a Compassionate Communities model stops working for the family in front of you.
The structural gap, and why it matters to funders and decision-makers
Here is the uncomfortable part for anyone designing palliative care systems: this navigator function currently relies on goodwill, individual initiative and, frankly, luck.
Some families stumble onto a compassionate GP who happens to know the local support network. Others aren’t so lucky. A handful of communities have an active Compassionate Communities initiative, but most don’t. The result is a postcode lottery in which the quality of a person’s death depends heavily on whether someone happened to connect the dots for them.
It isn’t a workforce gap that more clinical hours will fix. Doctors and nurses are spread thin delivering clinical care, and social workers already do real connection work of their own. Still, theirs tends to run through formal channels: referrals to home care packages, respite services or financial assistance. None of these professions is resourced, trained or positioned to map the informal side of community, the neighbours, the local groups, the everyday goodwill, and broker those relationships. That is a different skill set, and it already exists in the End-of-Life Doula workforce.
For Primary Health Networks and funders thinking about palliative care workforce integration, this is the argument worth sitting with. The navigator role Compassionate Communities depends on is currently unfunded, informal and inconsistent. End-of-Life Doulas are a trained, growing workforce already doing this work in pockets, without formal recognition or a sustainable funding pathway.
The navigator role Compassionate Communities depends on is currently unfunded, informal and inconsistent.
What is needed is a standard, a level of competency that every End-of-Life Doula taking on this navigator role can be trusted to meet. A national approach to credentialling and integration is not simply a professional development exercise. It is the infrastructure that would let Compassionate Communities move from being a hopeful model to a genuinely reliable one, in any postcode, not just the fortunate ones.
That family sitting at home with their folder of pamphlets deserves someone holding the thread. It’s time we funded that role properly, rather than leaving it to chance.
About the Author
Shannon Beresford is the Director of Your Path Guide Pty Ltd, an Adelaide-based End-of-Life Doula practice dedicated to helping people live and die with comfort, meaning and connection. The practice works alongside individuals and families to honour each person’s story and choices at one of life’s most significant transitions.
As Chair of HELD Australia Ltd, the national peak body for holistic end-of-life and death-care practitioners, Shannon advocates for stronger recognition of the End-of-Life Doula role across Australia’s health and aged care systems. He also holds a Certificate IV in End-of-Life Doula Services, the only nationally accredited qualification in this field.
Shannon also volunteers with the Central Adelaide Palliative Care Service (CAPCS), providing practical and emotional support to individuals and families in their final weeks of life.
References
- Abel, J, Kingston, H, Scally, A, Hartnoll, J, Hannam, G, Thomson-Moore, A & Kellehear, A 2018, ‘Reducing emergency hospital admissions: a population health complex intervention of an enhanced model of primary care and compassionate communities’, British Journal of General Practice, vol. 68, no. 676, pp. e803-e810.
- Aoun, SM, Bear, N & Rumbold, B 2023, ‘The compassionate communities connectors program: effect on healthcare usage’, Palliative Care and Social Practice, vol. 17.
- Horsfall, D, Psychogios, H, Rankin-Smith, H, Read, N & Noonan, K 2020, Researching Compassionate Communities in Australia: a short-term longitudinal study, The GroundSwell Project, Frenchs Forest, NSW.