When Jordan Lukey said goodbye to three close family members within months of each other, he was struck by how little his family had spoken about their deaths.
He realised his family didn't always understand his loved ones' end-of-life wishes, or have the chance to say goodbye in a way that honoured the connection they'd shared.
"It would've been great to talk about it more openly. ," he told SBS News.
The experience led to him ruminating on death and, eventually, becoming a funeral celebrant. Lukey is now passionate about encouraging conversations around the end of life so Australians feel "death comfortable", which he says is beneficial for everyone.
Jordan Lukey says rituals can act as a form of release if someone knows they're going to die. Source: Supplied
"When people have permission to talk about death, it's amazing to watch the transformation when they realise they have agency. Often people make really interesting decisions for themselves when they realise what's possible."
For Carolyn Vaughan, her mother's and father's deaths were starkly different.
Her father didn't open up about his wishes and his end of life was very medicalised.
"He was a staunch man, a determined breadwinner and he didn't want to admit he was unwell," Vaughan told SBS News.
"I think that shut down the conversation, which limited the availability for family and friends to be able to talk to him about his wishes, which was incredibly difficult."
Her mother, by contrast, "died in community, well supported with lots of conversations around the choices at end of life".
"I became so aware that there are so many options and choices now for people, and what limits us is our lack of conversation," she said.
End-of-life doula Carolyn Vaughan says Australians should be having everyday conversations about death. Source: Supplied
"We plan for our births, we plan for our weddings, but we shy away from the end of our life?
"We're all at different stages of being able to accept our death, and many people see it as a morbid thing. But what if we parked those taboos aside and had a light and positive conversation around death that invites openness, gentleness and understanding?"
A world of choice
While nearly nine in 10 (87 per cent) of Australians believe it's important to do some end-of-life planning, only one in three (35 per cent) have actually taken action, according to 2022 research by care provider Proveda.
Proveda organises Dying to Know Day, which encourages Australians to think and talk about their end of life.
Jessie Williams, community programs manager at Proveda, says while most Australians recognise the importance of planning for their end of life, many individuals and communities still face barriers when it comes to understanding what this means, taking action or starting a conversation around death and dying.
"This often leads to end-of-life experiences being misaligned with an individual's values, preferences or wishes, because they simply don't know what is available or what they can request or expect," she said.
Lukey and Vaughan are using Dying to Know Day this week to break down stigmas around death.
They say putting plans in place not only helps loved ones make decisions around care if things go wrong unexpectedly; it also allows people to honour their life and legacy and provides an outlet for grief for those who love them.
Often people make really interesting decisions for themselves when they realise what's possible.Jordan Lukey
Thinking about your death starts with a conversation with yourself, Vaughan says.
"Ask yourself, 'What is it that I want? What is it that's really important to me in my life? What would quality of life look like for me? What are my choices? Do I want to be buried? Do I want to have a living wake if I know that I'm dying? Do I want to have my funeral in a pub, on the beach or in someone's backyard so we're not restricted by time constraints?
"What meaning do I want? What do I want to do before I die?'"
Lukey says these interrogations can be especially therapeutic if someone knows they're terminally ill.
". This may be writing cards to grandchildren you'll never meet, or marking a wedding you'll never get to go to."
For the loved ones of someone who's dying, end-of-life planning allows them to "restore that person to their fullness", he adds.
"Whether it's flowers in their favourite shoes, painting their coffin, telling the person's life in pictures, it's important that those left behind feel connected to what's going on and find the experience nourishing.
Funeral celebrant Jordan Lukey says subtle details in funerals can "restore someone to their fullness". Source: Supplied
"And it could be as simple as lighting a candle or just speaking a few words, but that ritual is really important for people to process their grief."
When and how to talk about death
Vaughan says conversations around death shouldn't solely be with healthcare providers.
Instead, she believes they should be occurring in the community in workshops, in casual chats with friends, or at family gatherings.
"Having a safe space to foster conversations and share stories with each other will, in turn, help Australians feel inspired about their own wishes for end of life."
Once people get married or have children, or have a responsibility for someone else, talking about death takes on greater importance, she adds. Though in fact, it's never too early.
"If we're honest with children about death, there's so much to learn, enjoy and share about what this journey of life is really all about."
Living better
"It makes us more aware of life," Vaughan says. "People will say it makes them think a lot more about the way they want to live their life, that it makes them appreciate the relationships they have.
"They realise it's not about working 24 hours a day, it's about spending time with family that they may never get again."
Lukey says if he could go back in time, he would talk more openly with his family members before they died.
"I would have focused on their legacy a lot more, I would have talked to them about their early memories, and I would have recorded their voices.
"Facing death helps us boil down to what's really important."
