My husband didn’t plan the end of his life – I don’t want that for anyone else

We’re reminded to check everything except what matters most.

Australia has perfected the art of the polite reminder – we’re regularly nudged to check what’s happening inside and out. At 50, the government sends a discreet birthday gift, and we return the favour with our poo. Cervical and breast screening follow the same formula: the right age, a simple tool, and the shared understanding that it’s just what responsible adults do.

Melissa Reader: When my husband, Mauro, was dying of cancer, we had no conversations and no guidance to prepare us.

Yet the reminders stop short of life’s final chapter – the most predictable stage we’ll ever face, certain to touch each of us in our own ageing and in those we love. For all our check-ups and scans, we’ve skipped the final nudge – to make a meaningful plan before crisis hits. It’s not just a missed opportunity; it’s a collective blindness. A moral failing.

The result is a profound misalignment between what people want, what families experience, and what the system delivers. Most Australians say they want to be cared for and to die in a home-like setting, surrounded by the people and comforts that matter most, yet half still die in hospital. We plan for everything else – careers, parenthood, retirement – but not for this. Too few conversations, too little meaningful planning for the one stage of life we all face.

We can’t claim ignorance. Most deaths occur among people over 75, and 70 per cent are predictable and can be planned for. Yet in those final months, up to 38 per cent receive low-value interventions they neither need nor want, costing $4 billion a year, according to KPMG. Money spent on escalation instead of dignity and comfort.

Advance care planning has been on the national agenda for two decades, backed by successive governments. Yet after millions in funding, 86 per cent of Australians still have no meaningful plan. The process is too clinical, too complex, and too far from how real families live and talk.

A recent federal study claimed a third of Australians have planned ahead – an encouraging headline, until you look closer. Just 19 per cent had only talked about it, and another 3 per cent had scribbled notes. Valuable, yes … but a chat isn’t a plan. It’s like calling it a retirement strategy because you once said you’d travel after work. What’s missing is a way to turn talk into something real – to capture values and preferences in a way that feels human, not bureaucratic.

In my own life, I saw what happens when there’s no plan. When my husband, Mauro, was dying of cancer, we had no conversations and no guidance to prepare us. He spent his last six months shuttling between wards and surgeries that changed nothing, except where and how he spent his final months. It cost him comfort, cost us time and cost the system dearly. He should have been at home, surrounded by love. Instead, he died in intensive care – clinical, impersonal and steeped in regret.

Dr Mike Freelander, federal member for Macarthur and co-chair of the Parliamentary Friends of Aged Care, says the pressures are converging: an ageing population, stalled aged-care construction and workforce shortages in home-based care. The result? Older Australians get “parked” in hospital beds when they should be supported elsewhere. GP shortages deepen the strain. “We need to do better, and we can,” he says, backing earlier planning to keep families out of crisis.

Demographer Bernard Salt says that by 2032, Australia’s over-85s will grow by 60,000 in a single year – a 400 per cent increase. The future of care must be home-first.

It’s not complicated. No new infrastructure, no billion-dollar reform, just common sense. Everyone over 75 should make a plan for the final stage of life, starting with a conversation at the kitchen table. The existing 75-year health check already prompts GPs to discuss future care. What’s missing is a tool that makes it doable: simple, human and reassuring.

This doesn’t require wholesale reform; it’s about the smartest, most humane place to start, guided by common sense, compassion and courage: the qualities our health system needs most right now.

Melissa Reader is CEO of Violet, an Australian organisation helping people navigate the last stage of life.

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