On Dying to Know Day, Kerrie Noonan remembers her beloved grandmother’s death and how it sparked her curiosity about death and dying. The co-founder of the GroundSwell Project has committed much of her life to getting us to talk about death and accept it as a real-life event (where we will all star one day, centre-stage).

A strong interest or natural curiosity often proves a solid foundation for a career. For Kerrie Noonan, director at The GroundSwell Project, that heartfelt fascination has long-been death and dying.

She says it was triggered as a teenager by her grandmother’s sudden death, which was soon followed by the sudden death of a school teacher and her mother’s cancer diagnosis. It was reinforced in the five years she spent volunteering as a Camp Quality companion to a four-year-old who had cancer, and it was evident while she studied psychology – “I talked constantly about dying and death”. The natural focus on death and dying proved a strength when she started her first job; at age 24 she started her career in palliative care, working as a bereavement counsellor and psychologist.

She laughs, acknowledging just how unusual that first job was for someone so young, and how surprised people were to find her so actively seeking it.

“You can’t do that [work, at that age] without really good support and help,” says Kerrie, who works now as a clinical psychologist on a palliative care ward at Liverpool Hospital in Sydney.

“I was so determined to do it and I had a really great group of mentors who were very supportive.”

These days, Kerrie, 45, is something of a celebrity within death circles, well known for tirelessly advocating for normalising death, encouraging conversations about it, and re-establishing it as a social and community affair, rather than a medical event.

More than seven years ago Kerrie co-founded The GroundSwell Project which has harnessed creative people and the arts, rather than medicos, in order to build the community’s level of death literacy. One of its great successes is today’s Dying to Know Day, now in its fifth year. This year, it has inspired more than 400 events, which will play out across Australia throughout August.

Kerrie co-founded GroundSwell with playwright, Peta Murray. Within a year of conceiving the idea, they had established it as a registered charity with a board.

“GroundSwell was really a way for me to make a contribution. About 10 years ago things started to change a little in the death sector and I wanted to pull all of my skills together and make a contribution to that change,” says Kerrie.

“Peta is a writer and producer, so she was the arts bit and I could do the health bit. We wanted to pull together arts and health and it felt like a really creative way to make a contribution.”

Without the benefit of government funding, GroundSwell has relied on grants and goodwill to roll out 60 community-based projects. The first was a film project with Year 11 Students and people with motor neurone disease, which set the tone for the rest.

“We didn’t know what was going to happen – we put all the quality controls in place that we could and then just had fun with it and it was the most amazing experience ever.

“We are still drawing upon the learning from that first project even today.

“We’ve often been the trailblazer; some of our projects have been the first of their type. They’ve been small, but we’ve been able to share them and then people have been able to do it for themselves.”

The film project led to a national film festival for organ and tissue donation, featuring young people’s voices, and then Dying To Know Day.

Kerrie rattles off some of the more unorthodox and creative events the national day has inspired; a funeral director in Queensland who is running an art exhibition on coffin lids; an open-mike event where people share a story, poem or performance piece on death, dying or loss; and a coffin club in Tasmania at a men’s shed (where people make their own coffins)  – which started as a Dying to Know Day event.

“It is really exciting to see what local people do in their communities and what happens when people get on with it locally,” she says.

Kerrie traces her interest in death and dying, and the way we respond to it, back to when she was about 15 years old. Having been out with a friend, she returned to her family home in Ballina, northern NSW, to find no-one there. Her family were all down the road at her grandmother’s house. She’d had a massive heart attack and died.

“My grandmother and I were very close and she died very suddenly; she went from being alive to being dead.

“The next morning I knew that I needed to say goodbye to my grandmother and so I asked to see her. I think in some ways that was a strange request, but my parents, to their credit, did allow it. They organised a viewing.”

Kerrie, now 45, says that while this first experience of a loved one’s death was “deeply, deeply difficult and sad”, it was also helpful in helping her form views about death that she still holds today.

“I think your teenage years are quite formative years, in terms of understanding who you are in the world and what you want to be.”

She remembers attending the viewing with her brother and their cousins. They all wanted to see their grandmother, but Kerrie remembers the adults being more reticent and staying in another room.

Her grandmother’s face was concealed by a small curtain, like a veil over the coffin, which her older cousin pulled away.

“My grandmother always wore glasses and she didn’t have her glasses on in her coffin. We weren’t weirded out that she was in a coffin; we were weirded out that she wasn’t wearing her glasses.”

Her cousin took the lead in touching her grandmother; stroking her hair and kissing her, which Kerrie says provided valuable insight into having someone who can facilitate what others need to do.

“We were all thinking it, but she did it very naturally,” says Kerrie, who followed suit and also placed a letter, a swimming cap and a medal into the coffin.

“Seeing her was massively important. I cannot really imagine what my grief would be like if I hadn’t been able to say goodbye like that and to touch her and see her and really deeply understand that she was dead; that absolutely that she was dead.

“Ever since that viewing, when someone dies I have always felt like my goodbye has never been quite settled unless I get to see them after they die. When I haven’t had the opportunity it feels strange and I think it’s because of that first big experience I had with death.

“I often say it sparked a curiosity in me around death and dying that has never really gone away, and I’ve really turned that curiosity into a profession.

“I can’t imagine doing anything else and I think in some ways I am kind of suited to this work.”

As a clinical psychologist Kerrie sometimes only she sees patients only once or twice before they die; a limited time in which to prepare them for death. She often passes on simple behavioural strategies to reduce the patient’s anxiety, calm their thinking and help them breathe. She also works with families as they try to make sense of what is going on.

“Some of the most profound work I’ve done is with families who are sitting around the bed together and trying to find the language for what they are going through and how on earth they are ever going to survive this and get it together.”

Kerrie says she facilitates conversations about what is important, what this time means to them and what memories they want to have of the experience in six months’ time. Family members often want to understand more deeply what is happening and discuss how they are feeling and coping.

“I’ve never been overwhelmed by this work,” says Kerrie.

“Being a psychologist is really just about understanding peoples’ stories deeply.”

When Palliative Matters calls to chat, Kerrie is in the final stages of finessing her PhD. Her 80,000-word thesis includes insights from her interviews with people working in the ‘death system’, such as coroners, celebrants, community workers, death doulas, death midwives and artists. She believes that better understanding how this death system operates is critical if we are to achieve a more social, rather than medical, approach to death and dying.

“We still have a medicalised system in terms of death and dying. Most of us are dying in institutions and we can’t rely on our health system alone to create change. We can’t keep saying the doctors, nurses and palliative care people need to change death. It is going to need more of a bottom-up, top-down approach.”

Her research suggests that professionals working within the health system don’t have great awareness about the work happening outside of hospitals. However, people working outside the health system know all the ins and outs of the health system and are highly death literate.

“They knew which doctors to talk to, how to talk to your GP about palliative care, how to organise a death café and who the funeral directors in their area were.”

Kerrie says that all of her work is ultimately about achieving cultural change.

“If we are going to change the way we do death in Australia, one of the things we need to do better is work across the systems we have in a more collaborative and open way," she says.

"There is a massive opportunity for formal and informal services to be working better together.”