When my husband Bill was diagnosed with stage 4 lung cancer in July 2021, we were devastated. We had built our dream life on 20 acres of bushland near Smythesdale, Victoria. We imagined another 30 years together, not six months.
But amidst the shock and grief, we found something unexpected: support, clarity, and grace.
When Bill was diagnosed, we engaged an end of life doula to support us through whatever lay ahead. I knew about end of life doulas, but experiencing it as family was something entirely different. From the very beginning, she brought warmth and wisdom. She helped us understand what was happening, what our choices were, and how to stay true to ourselves through it all.
Learning to talk about the unthinkable
One of the first things she did was encourage us to talk, not just with each other, but with our whole family. She set up a Zoom session with our daughters and other close family, and another specifically for our grandchildren. Those conversations were hard, but they were also precious. They helped prepare all of us, emotionally and practically, for what was coming.
I don’t think we would have known how to start those conversations on our own. She gave us the words, the courage, and the framework.
Planning with purpose
Bill already had legal documents in place: a will, powers of attorney, an Advance Care Directive. Our doula encouraged us to review and update everything. We sat down together and made sure it all reflected what Bill actually wanted now, not what he’d thought years earlier.
Our doula was with us when we met with a funeral company that aligned with our values. We talked about what Bill’s last days might look like. Where did he want to be? Who did he want around him? What mattered most?
The answer was clear: he would die at home, surrounded by love.
Having those conversations early, when Bill was still well enough to participate fully, was a gift. It gave us both peace.
Building a circle of care
Throughout the next two years, our doula was a steady, quiet presence. She helped us gather a care team: doctors, hospice nurses, friends, family, funeral staff. Importantly, they were all aligned with our values and Bill’s wishes.
She introduced us to an app called Gather My Crew, which helped us coordinate meals, visits, and practical support. We never felt alone. We felt held.
Bill started writing about his journey in a private Facebook group we created: Bill’s Cancer Journey. This too was an idea shared with us by our doula to support us. It became a space for updates, memories, and reflections, and a way to stay connected with our friends, family, those close to us without having to repeat painful details over and over.
After he died, I renamed it Remembering Bill. It’s become a digital sanctuary, a place I return to when I need to feel close to him.
When the care team came together
Having a circle of care sounds reassuring in theory. One Sunday, I discovered what it meant in practice.
Bill had been experiencing sharp, stabbing chest pains. He was mid-way through a new round of chemotherapy, and chest pain can be a side effect, but we couldn’t be sure. We called the hospice after-hours line, and the nurse agreed: he should go to emergency.
What followed was the kind of experience many families will recognise: ECGs, X-rays, a CT scan. Reassuring news about his heart, then a suspected lung infection, then antibiotics that made him vomit. Doctors rotating through who hadn’t had time to read his notes. One asked whether he had ever had lung cancer before, there was talk of a stay of several days and a transfer to a permanent ward.
Bill was having none of it. He was already dying, he said. He didn’t need to be fixed. He just wanted to go home.
I came back to the hospital the next morning at 8am, only to be turned away until visiting hours at 2pm. I’d been given the wrong information the night before, and the new staff on shift weren’t able to help. I stood in the entrance area, deflated and a little lost, with Bill frustrated on the phone, and unsure what to do next. So, I called our doula.
She was calm and immediate. She reminded me not to ask for a yes or a no, but to ask for options and then let Bill choose. That reframe changed everything. She reminded us that we had a connections with the oncology and palliative care team and encouraged me to call them and have them intervene with the emergency department on Bill’s behalf.
I rang the on-call nurse from the oncology team at the cancer centre. She went straight to Bill in the short stay ward, reassured him, and set the wheels in motion to transfer his care from the emergency team to the oncology team. She came back to find me still waiting in the entrance and talked me through what would happen next.
By the time the oncology doctor and palliative care pain specialist did their rounds, the conversation had shifted entirely. Instead of focusing on keeping Bill in hospital, they were asking what he wanted and how they could make that happen. He came home that day, with oral antibiotics and a clear plan.
Afterwards, Bill reflected that he might not be so quick to report pain next time if it meant tests and a hospital stay as long as he had what he needed to manage at home. It was a reminder of something important: when someone is living with a terminal diagnosis, every decision they make about their care carries weight. It was a sobering reminder that for someone at the end of life, dignity isn’t just about comfort; it’s about remaining the author of your own story.
For me, the lesson was just as clear. I needed to show up as Bill’s carer and advocate, not as a visitor. And I needed to know who to call. That day, I knew exactly who to call, and it made all the difference.
When everything changed in a moment
We thought we were ready for what would happen next. We imagined a slow farewell, a bedside vigil, a chance to say everything we needed to say. But life and death are rarely tidy.
Bill died suddenly on 20 September 2023. I had stepped out for a massage, needing an hour to breathe. Our daughter and granddaughter were with him. It was peaceful. It was unexpected, but not chaotic.
Because we had prepared, I knew exactly what to do. I called our doula, who was interstate at the time, and she immediately activated the plan. The funeral company came. We kept Bill at home for two days, cared for by us, supported by a cooling blanket.
We washed him, wrapped him, and held him.
I will never forget the calm I felt in those moments. Not because I wasn’t grieving; I was shattered. But because I wasn’t scrambling. I wasn’t making frantic phone calls or second-guessing decisions. Everything was in place.
That preparation was a gift Bill and I gave each other. And our doula made it possible.
Saying goodbye on our terms
Later, we gathered for a vigil. Family and friends decorated Bill’s shroud with flowers, greenery, and messages. We sang. We cried. We wrapped him in love. He was cremated in that shroud that all his precious family and friends had decorated, just as he wanted.
Five weeks later, 80 people joined us on our bush block for a celebration of Bill’s life. Our doula helped us plan every detail and served as the celebrant.
There were colourful Hawaiian shirts and ukulele music. A bushwalk through the land Bill loved. Laughter and tears. We planted native trees and laid Bill’s ashes under a cairn of white rocks, and everyone added a stone.
It was, in every way, a beautiful goodbye.
Grief doesn’t end, but neither does support
Even now, more than two years later, our doula continues to walk alongside me. Her care didn’t end when Bill’s life did.
She’s helped me navigate grief, honour memory, and learn to live with loss. As she once told me, grief doesn’t go away, but we can learn to “hold” it, so it becomes part of who we are and who we have loved.
I am still learning how to do that.
Why I’m sharing this
I share this story because what we experienced shouldn’t be rare. Everyone deserves this kind of support. End of life doulas aren’t just for the dying. They’re for the living. They help families like mine stay together, stay grounded, and keep loving through the hardest times.
They take the strain off our healthcare system, yes, but more than that, they return death to where it belongs: in families, in communities, as a normal part of life; even when it is painful.
I hope one day soon, everyone will have access to this kind of care. It shouldn’t be a privilege. It should be available to all of us when we need it most. No one should have to face the end of life alone. And no family should have to navigate grief and loss without guidance, without support, without someone to say: ‘I’ll be with you every step of the way.’
Kathy Elder
Finance & Administration Support
Kathy has worked for over 20 years in the Finance sector, with roles in Banking and Vic Government Department of Justice. She is excited to help Preparing the Way support the training and development of doulas by providing administrative assistance to the team.