Where long dying becomes inconvenient.

What my father’s death revealed about the limits of aged care—and the urgency of presence.

William was his name, my father.

This is a story about loss—the kind our systems still don’t know how to hold.

William was in hospice, fully aware that he was dying. But that didn’t stop him. Not from designing on post-it notes rehabilitation equipment for his grandson to build—part of his imagined comeback. Not from reading the latest technical paper to inform his writings called “Thoughts in Search of Meaning” or TISMs as they were affectionately referred. Not from reading the newspapers from cover to cover. And most importantly it did not stop him from counselling staff on any and all life matters. Or from holding bold, ambitious conversations with his children, his grandchildren, and his wife (my mother) (Billie)—still trying to solve someone else’s problems or generational tension before time ran out.

This is young William, 89 years of age (if age even matters) curious, ambitious for those around him, opinionated, maddening at times, smart, funny (only at times), loving, caring—and did I tell you he was dying.

Every day there was a queue of immediate family (and there are lots of us including three siblings) waiting to see him. He held court with each visitor, genuinely interested in their lives, and eager to share his reflections drawn from a lifetime of reading, thinking—and the stack of papers and “work” he insisted be brought to his bedside.

He squeezed every drop of dialogue from the air around him—still trying to make sense of situations, and remaining curious about the symptoms emerging from the brain and liver cancer. It didn’t really matter to Dad what the disease was. He was dying. And he knew it. But he was going to push the envelope to the very end.

I was back from Canada, where I had lived for more than a decade, to be with Mum and the family. More than once a year, I’d find myself in Perth, walking the streets with Dad at 4 a.m.—listening to his questions, and marveling at his resilience. He was a great walker who loved every part of nature—trees, birds, the breeze, rain, even the shape and texture of leaves. He noticed things others missed, chatted easily with passersby, and delighted in absolutely everything about life and living. He was remarkable in so many ways.

After four weeks in hospice, he announced to Mum and me that there should be a funeral—so I could return to Canada and get on with my life. I gently reminded him that he wasn’t dead yet. He grinned and said, “Come on, Janie—be a little creative!”

The next few days told the story. One afternoon, I walked in to find him holding a pillow over his face.

“Is that the best you can do?” I asked.

“Well,” he replied, “I tried to hold my breath. That didn’t work.”

The next day, a doctor pulled Mum and me aside into the ‘quiet room’ and explained that Mr. Barratt would be transferred to an aged care facility in the coming days. I asked, “Because he’s not dying quickly enough?” I knew full well that the level of care he now needed was hard to find on short notice—and he didn’t have time. Mum’s quiet determination was present but so was her distress. It was difficult enough for her to watch the only person she had ever loved in her adult life slipping away. The doctor looked taken aback—but it was the truth.

We don’t quite know what to do with someone who is dying slowly but vividly.

He didn’t get the funeral he tried to orchestrate, nor did I deliver what he called a “creative” solution. Instead, he set his own path—with knowledge, conversation, and the quiet power of persuasion.

One afternoon, after expressing the need for further pain relief, while winking at me—the medication was gradually increased over a number of hours into the next day. Dad’s final afternoon was spent talking and laughing with Mum for an hour or so. They sang old songs together, reminiscent of their younger days and shared stories of family and friends. He expressed his love and told her that he would miss her very much, and then he sent us home.

As I had done for many weeks, I arrived early the next morning to see Dad and to feed him breakfast. Things were different. His breathing was shallow. His eyes were open but unseeing. I sat quietly beside him, held his hand and talked as I had done every day before.

Just before 7am, my father died.

Clara, the duty nurse, came in shortly after and was surprised there was no pulse, having talked with him just before I had arrived. She said they’d had philosophical conversations late into the evening about God and the universe (this sounds very much like my father). He had been heard praying in the early hours.

I left the hospice with a different task—to tell Mum.

I can remember quite vividly driving from the hospice thinking to myself that everything is the same but nothing is ever the same.
When I arrived home, I found her busy with her chores in the bedroom.
Sitting gently beside her, I said, “Dad has just died.”

And with grace I still can’t quite fathom, my mother—his love of nearly 70 years—smiled softly and said, “I’m so happy he’s on his next big adventure.”

William was not afraid of dying. Perhaps a little sad about leaving. Perhaps a little envious that he couldn’t ask, one last time,
“Did you make a valuable contribution today?”
We did. We are.

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And still, there is loss.
Not the kind you manage with procedures or file under “bereavement leave.” Not the kind that fits neatly into a seven-day policy or a line item in a strategic plan. This kind of loss—real, irreducible loss—asks for something of our systems: humanity.

We rarely have time—time to consult, time to listen, time to be heard, time to stop, time to be silent, time to be.

There is no roadmap. No form to fill. No protocol for how to honor someone still teaching as they die.

No infrastructure for someone who is both vividly alive and steadily leaving.

As sociologist Victor Turner would say (Turner, 1969), loss creates a liminal space—a threshold between what was and what is not yet. My father's death did not mark a clean break. It opened up a space where time felt suspended. For weeks, I lived in two worlds: one where Dad was still thinking, advising, teasing and coming up with or making up new words; and another where he just wasn’t there. Even now, that in-between space is with me. It’s not just about family members dying or even colleagues or friends —it’s about learning who I am without them.

This is the real work of loss. We are not the same person after someone that we care deeply about leaves us. There’s no going back to who I was before sitting at his bedside, before whispering to Mum that he had died.

I haven’t let go—I’ve simply hold him differently.

And modern systems—especially in ageing and health—have no place for this kind of ambiguity. As the Lancet Commission on the Value of Death (The Lancet Commission, 2022), concludes the challenge of transforming death and dying is urgent and universal. Death should be brought back into life, with a focus on dignity, compassion, and community. The responsibility for this transformation lies with everyone-individuals, health professionals, communities, and governments

But witnessing death? Accompanying it with meaning? That remains relatively uncharted.

Where long dying becomes inconvenient.

What Dad needed was not more intervention—but more room. Room for his own path, to sing with Mum, to counsel a nurse at midnight (!) to set his affairs in order not on paper, but in spirit. And for William this is exactly what he got, but it took advocacy from family.

These moments weren’t “extra.” They were essential. But they do not appear on discharge forms or quality indicators.

That’s the gap.
We’ve medicalized dying, but forgotten how to accompany it.
We treat the body, but often fail to honor the life it held.

And yet, there are glimmers of what’s possible when humanity is central to the system.

In Kerala, India, a community-led palliative care model continues to reach tens of thousands of people, built on the belief that dying is not a medical emergency but a social experience that communities can—and must—hold. With trained volunteers, home visits, and strong local governance, people are supported to die at home with presence and dignity (Nair & Molyneux, 2024; Siva et al., 2023).

In the UK, the Dying Matters initiative brings death back into the public conversation—in workplaces, classrooms, and communities—reminding us that dying is not simply a clinical event, but part of living.

In Australia, despite deep structural challenges in aged care, some providers are quietly pioneering new models of support: integrating music therapy, end-of-life doulas, and spiritual accompaniment into their palliative care approach. These are not “extras”—they are core to what it means to honor a life as it ends.

And in parts of New Zealand and the Netherlands, “death doulas” are being integrated into end-of-life planning—offering emotional and spiritual presence for the dying and their families, making space not just for care, but for meaning.

These are not yet the norm. But they are proof that better is possible. That dignity in dying is not a luxury—it’s a choice our systems can make.

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So what is this loss, really?
It’s what happens when systems are not designed to hold the full experience of dying.
It’s the absence of time—to reflect, to speak, to be heard.
It’s the unmeasured labor of meaning-making that families, communities, and care teams shoulder in silence.

If we are serious about valuing life, then we must also value how it ends.

We need policies that do more than manage logistics.
We need systems that make space for complexity, contradiction, and care.
We need public discourse that treats death not as failure, but as a vital part of living.

Until then, this work—of dignity, of presence, of accompaniment—rests on the shoulders of individuals.
In homes. In hospice rooms. In the quiet spaces where people are still doing what policy has yet to imagine.

This is not a peripheral issue. This is the frontier of humane and intelligent care. And if loss teaches us anything, it’s that presence, not procedure, is what matters most.

References

Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press.

Hospice UK. (2022). Dying Matters: Making death part of life. Hospice UK. https://www.hospiceuk.org/our-campaigns/dying-matters

Nair, S. N., & Molyneux, C. (2024). Palliative care in Kerala: Integration, participation, and people-centredness. International Journal for Equity in Health, 23(1), Article 54. https://doi.org/10.1186/s12939-024-02354-6

Siva, N., Mohan, V. R., & Balarajan, Y. (2023). Understanding values in community-based palliative care: A case study from Kerala, India. PLOS Global Public Health, 3(6), e0002337. https://doi.org/10.1371/journal.pgph.0002337

The GroundSwell Project Australia. (2023). Compassionate communities and end-of-life care. https://www.thegroundswellproject.com/compassionate-communities

The Lancet Commission on the Value of Death. (2022). Report of the Lancet Commission on the Value of Death: Bringing death back into life. The Lancet, 399(10327), 837–884. https://doi.org/10.1016/S0140-6736(21)02314-X

Turner, V. (1969). The ritual process: Structure and anti-structure. Aldine Transaction.

Van den Block, L., & Deliens, L. (2022). The role of death doulas in end-of-life care: Emerging models in the Netherlands and beyond. Palliative Medicine Reports, 3(1), 101–104. https://doi.org/10.1177/26323524221096836