Every year, National Palliative Care Week invites a pause, not just for health professionals, or those already living alongside illness and loss, but for everyone. It is a week that asks a deceptively simple question: what do we want end of life to look like, broadly, in our communities, and in our own lives?
In 2026, the theme is Getting to the heart of it: Big Questions. Real Answers. That is aligned with the work we do at Preparing the Way because when it comes to end of life, the questions really are big. They are also deeply human. What matters most? Who do I want around me? What do I need to say? What do I need to know? How do I support someone I love without losing myself in the process? How do we make care feel personal, safe and respectful?
These are not only clinical questions. They are family questions, community questions, cultural questions, spiritual questions, and practical questions. They belong to all of us.
Why we avoid the conversation
There are understandable reasons we avoid talking about end of life. Conversations about end of life can feel like tempting fate, or like giving up on someone we love. We assume there will be more time. We assume someone else, perhaps a doctor, nurse, social worker or aged care professional, will handle the hard parts when they arrive.
But palliative care, at its heart, is not just clinical service. It is an approach to care that touches every part of a person’s life. It is about comfort, quality of life, dignity, choice, connection, and support. And most of that life happens outside the clinic.
The 95 per cent that happens at home
Professor Allan Kellehear, a leading voice in public health approaches to end of life, has described how around 95 per cent of the time a seriously ill or dying person experiences is lived outside direct contact with health professionals. It is lived at home, in the in between hours, in the quiet of an ordinary Tuesday when the visiting nurse has come and gone.
That time is held, most often, by the people close to them: a spouse who has quietly become an expert in their partner’s medications, a daughter managing her mother’s discomfort while also managing her own fear, a son trying to understand paperwork and Centrelink (Australia) and Work and Income (Aotearoa New Zealand) and family dynamics all at once, a neighbour who drops in and stays, a friend who makes soup, a child who senses far more than adults sometimes realise.
Palliative care belongs in those spaces too. That is what this week is really drawing our attention to.
Palliative care is new, caring for the dying is ancient
As a named, professional, specialist field, ‘palliative care’ is relatively new. The modern hospice movement is usually traced to Dame Cicely Saunders, who founded St Christopher’s Hospice in London in 1967. It was the first modern hospice to bring together expert pain and symptom control, compassionate care, teaching and clinical research. In the 1970s, Dr Balfour Mount in Canada helped establish the language of ‘palliative care’ through his work at the Royal Victoria Hospital in Montreal. In Australia, the modern hospice and palliative care movement began to take hold in the 1970s, with the first hospice program established in Melbourne in 1979. New Zealand’s first hospice, Mary Potter Hospice, opened in Wellington also in 1979.
That means formal palliative care, as most people understand it today, has been part of Australia’s and New Zealand’s health system for less than 50 years. But care of our ageing, dying and dead is not new.
Long before we had the words ‘palliative care’, people were tending our ageing, dying and dead. Families, neighbours, aunties, elders, faith communities, women, friends, birth attendants, community carers and local wise people gathered around birth, death, grief and transition. They sat vigil, washed bodies, fed families, kept children close, and helped them understand what was happening. They sang, prayed, lit candles, and shared stories. They held hands, stayed through the night, and helped people cross thresholds.
This is ancient human work.
Modern palliative care did not create compassionate end of life care. It gave one part of it a clinical home. It brought vital skill, research, pain and symptom management, evidence, interdisciplinary teams and advocacy into a space that had too often been neglected by medicine. That matters enormously. We need more palliative care, not less. We need better access, earlier referrals, stronger services and more support for the extraordinary clinicians doing this work.
And we also need to remember that dying has never belonged only to medicine.
What the formal system offers, and where it ends
The formal system does extraordinary work. Specialist nurses, palliative physicians, allied health professionals, aged care teams, general practitioners, social workers and many others bring clinical skill and hard-won experience to some of the most complex and tender moments in human life. That work is essential and it is under resourced. We should be advocating loudly for its expansion.
And yet care cannot be outsourced entirely to the health system. It never could be.
The people sitting at bedsides, making meals, navigating paperwork, preparing children, listening to fear, holding difficult conversations, keeping vigil and simply being present are also delivering care, even when they do not name it that way. When we widen our understanding of what palliative care is, something shifts. People stop feeling like they have failed because they cannot cure what is unfolding and start to see that what they are doing has meaning and worth.
Where end of life doulas fit in
This is one reason why end of life doulas exist.
End of life doulas are not there to replace clinical teams. They are there to be present in the 95 per cent, alongside families, carers, and communities, in the practical, emotional, relational, and spiritual terrains that formal services were not designed to fully occupy.
Doulas offer time, continuity, steadiness, listening, planning, and presence. They can help people understand options, prepare conversations, think through advance care planning, create rituals, support carers, sit with uncertainty, and stay connected to what matters.
In many ways, end of life doulas are part of an ancient lineage, servants at times of transition, now finding language and place again within contemporary care systems. They remind us that end of life care is not only about what happens to the body. It is also about relationships, stories, unfinished things, culture, spirit, home, family, community, and love.
Building a community that can talk about end of life
National Palliative Care Week asks whether we are a society that can talk about dying before we are in crisis. It asks whether we can have conversations at the kitchen table, in our workplaces, in aged care settings, in hospitals, in community groups, in families, and among friends.
It asks whether death literacy is something we want to build in our communities, not just in our hospitals.
The answer, increasingly, is yes. More people are thinking carefully about advance care planning, about what they want their final days to feel like, and about how to support the people close to them through illness, dying, death and grief. More people are asking big questions. They deserve real answers. They also deserve to know that they are allowed to be part of the care.
An invitation to pay attention
This week offers an invitation to go a little further: to ask yourself what you know and what you do not yet know, to think about who in your life might be carrying something quietly, and to notice the people around you who are already caring and ask how they are really going.
It also invites us to honour the people who have always done this work, often invisibly: families, friends, carers, neighbours, community members, clinicians, volunteers, doulas – the people who show up and stay.
Dying is not a medical event that happens to some of us. It is a part of life that will come to all of us, and touch nearly every life before it arrives in our own. National Palliative Care Week is a chance to let that reality in, not with dread, but with the kind of open-eyed attention that makes things, in the end, a little more held.
Palliative care is new. Caring for the dying is ancient. And when we bring the best of both together, clinical skill and community care, professional knowledge and human presence, we begin to build the kind of end of life care all people deserve.