When someone develops complex health or care needs, the people around them often become part of the care system too, whether they sign up for it or not.
They rarely think of themselves as carers. They’re a partner, an adult child, a sibling, a friend or a neighbour, doing what needs to be done. But the role has a way of growing. Appointments to attend, medications to track, phone calls to make, services to organise, forms to fill out, professionals to talk to, decisions to help make. Before long, they’re doing far more than anyone asked them to.
At end of life, this work becomes especially complex. Families may be moving between hospitals, community services, aged care and palliative care, all while managing changing needs and making decisions that carry real emotional weight.
Most of this work is unpaid. Most of it goes unnoticed. And there’s a lot more of it than people realise.
According to the Australian Institute of Health and Welfare’s (AIHW) Australia’s health 2026 report, around 3 million Australians provided informal care in 2022, including 1.2 million primary carers. As Australians live longer with chronic conditions, disability and age-related care needs, and as more care shifts into the home, families and friends are picking up a growing share of it.
Caring is more than providing care
When we picture caring for someone, we tend to think of the visible tasks: preparing meals, helping with personal care, driving to an appointment, sitting with someone for company. But there’s another layer of work underneath that, one that’s much harder to see.
Someone must know when the next appointment is. Someone must remember what the specialist said last time, notice that it doesn’t quite match what another clinician said and chase up the referral that never seemed to go anywhere.
Often that someone is learning an entirely new vocabulary almost overnight: diagnoses, treatment options, medications, advance care planning, aged care assessments, palliative care services, legal documents, what support might even be available at home.
Then there’s the communication. One person in the family usually ends up as the hub, fielding questions from relatives while also liaising with nurses, doctors, allied health professionals and service providers.
No single task on that list looks especially large. Add them together, though, and it’s a genuine workload, one that competes with a job, a household and a life of one’s own.
When the system depends on families to connect the dots
Australia’s health and care systems are complicated, particularly for people whose needs span more than one service. The AIHW notes that people often move between hospitals, primary and community care, disability supports and aged care, which makes coordination between these systems essential, and it acknowledges that coordination often falls down exactly where these systems meet.
When it works, people experience something close to continuity of care. When it doesn’t, families become the continuity instead: carrying information from one service to the next, keeping their own records, retelling a person’s history for the third or fourth time, noticing what’s been missed, making yet another phone call.
Carers are already telling us coordination is a problem. In 2024, 48% of carers supporting people with dementia named poor care coordination as a major barrier to accessing support, and in 2022, only 45% of primary carers were satisfied with the services available to them.
That points to something more complicated than carers simply needing better self-care habits. Often the strain comes from how much they’re being asked, implicitly or otherwise, to carry on the system’s behalf.
The emotional work is work too
Underneath the practical and administrative load sits another kind of work altogether.
Someone might be trying to support a person whose health is changing while sitting with their own fear, grief and exhaustion. They might be helping someone make decisions while trying hard not to steer those decisions toward their own preferences. They might be navigating disagreement within the family about what should happen next.
They may also be having conversations they’ve never had before and hoping they’re getting them right: what the person wants if their health changes, what matters most to them now, who should speak for them if they can’t speak for themselves, where they’d rather receive care, what’s actually worrying them.
These aren’t administrative questions dressed up as emotional ones. They touch relationships, values, identity, autonomy and grief directly. And while professionals move in and out of a person’s care, family and friends are usually there for the whole of it.
The impact on carers is measurable
None of this is only anecdotal. The numbers back it up.
The Australia’s health 2026 report draws on the 2025 Carer Wellbeing Survey, and the gap between unpaid carers and the general adult population is stark. Sixty-one per cent of unpaid carers did not report a healthy level of wellbeing, compared with 43% of Australian adults. Carers were three times as likely to report feeling lonely often or always, 36% against 12%. High psychological distress was reported by 34% of carers, compared with 16% of adults generally.
These figures should shift how we talk about carer support. It can’t only be about helping people cope better with a load that shouldn’t be this heavy in the first place. We need to ask what’s creating that load: what knowledge people are expected to pick up on the fly, what responsibilities they’re carrying without ever agreeing to them, and where earlier preparation and better support could change things.
Information can change the experience
We can’t remove all the uncertainty that comes with serious illness and end of life. We can’t make every hard decision easy. But being informed genuinely helps.
Understanding how care systems work, knowing what questions to ask, and having some familiarity with end of life before it arrives can help people take part in conversations and decisions with more confidence, and prepare before they’re in the middle of a crisis rather than during it.
Most people meet the language and systems of end of life for the first time at the exact moment they have the least capacity to learn them. They’re exhausted, worried and trying to absorb far too much, far too fast.
Building that literacy earlier gives people something to stand on when it’s needed most.
Where end of life doulas can help
End of life doulas don’t replace health professionals, palliative care teams or other services, and they’re not there to take decision-making away from a person or their family. The role is complementary.
An end of life doula offers practical, emotional and informational support: helping people understand their options, work out their priorities, prepare for hard conversations, and find their footing in what can feel like an entirely unfamiliar landscape.
They also pay attention to the people doing the caring. Sometimes that looks like helping a family work out what needs to be done. Sometimes it’s supporting communication between family members. And sometimes it’s simply noticing that the person who’s been holding everything together for everyone else hasn’t had space to ask their own questions.
This is one reason doula skills reach well beyond professional practice. The same skills support people working in health, aged care and community settings, as well as anyone who wants to be better prepared to support someone in their own life.
Caring shouldn’t require becoming an expert overnight
Australia’s health system increasingly recognises the value of coordinated person-centred care. The AIHW notes that complex care needs integrated services, multidisciplinary teams and sustained support, not only for the person receiving care, but for the families and carers around them.
Yet millions of Australians are already doing an enormous amount of the work that sits in the gaps between services: remembering, organising, communicating, advocating, researching, deciding, caring. That labour deserves recognition. Carers deserve meaningful support. But perhaps we also need to look further upstream than that.
End of life knowledge shouldn’t be something people encounter for the first time when circumstances force them to learn it quickly. The more we can build understanding, confidence and practical skill before a crisis hits, the less foreign the territory feels when someone close to us needs care.
We may never make caring easy. But we can make sure people are better prepared for the work it so often asks of them.