The Death Cafe in Canberra meets occasionally to talk about end of life choices. (Facebook: Death Cafe)
Most people spend their lives fighting against the topic of death.
- Death cafes are informal gatherings where people can discuss death
- An ACT Government inquiry considered funding the initiative in order to improve death literacy
- Counsellors warn that guidelines for cafe conversations are needed to help participants feel comfortable and safe
End of Life doula Vickie Hingston-Jones is not one of them.
“I say that death is like the dragon under the bed, and when you pull it out and look it in the eye, [you] see it’s not really that scary,” she says.
“Nobody gets out of here alive.”
Ms Hingston-Jones runs Canberra’s occasional death cafes — places where strangers with no agenda meet up to talk about anything related to dying.
They’re designed to be casual conversations over coffee and cake, usually in a home or community space, and have spread across the world since their conception in Switzerland in 2004.
“It’s the really basic [questions] like what is it like to die, have you ever seen anybody die, have you been with a body, why are we so afraid of death, what can we do after we die, things about burial options,” Ms Hingston-Jones said.
“It’s just everything.”
A recent Legislative Assembly inquiry into end-of-life choices in the ACT recommended the Government consider trialling funding for death cafes, including funding existing non-government groups that already run them.
It found there was a need in the ACT for improved “death literacy”.
It heard “there currently exists a community-wide reluctance to engage in open and frank discussion of death, resulting in poor advance planning and poor outcomes for individuals and their loved ones”.
The report made 24 recommendations, including an increased focus on palliative care and improved access to advanced care planning to articulate a person’s preferences at the end of their life.
Ms Hingston-Smith said society lost its connection with death over time.
“Our great-grandmothers would have probably died at home and their bodies would have been cared for at home, but in modern times we sort of outsource that,” she said.
“There’s a fear of death because it’s such a big unknown.
“I also think Hollywood has a lot to answer for because death is always portrayed as something really horrific, people get blown to bits or die in agony.”
She said many people leave death cafes curious about the topic and able to discuss it further with friends and family.
‘It’s not for everybody’
Grief counsellor Sonia Fenwick said death cafes were valuable to start conversations about dying, but there must be measures to ensure participants feel comfortable and safe.
“It’s not for everyone [though], it can be quite confronting,” she said.
Ms Fenwick said there should be rules around respect for different perspectives and care options for anyone who felt emotionally triggered by the conversations.
“There are different people from the community coming together without any background to their story so it’s important, I think, for facilitators of a death cafe to establish some guidelines upfront,” she said.
Ms Fenwick also said there also needed to be a level of self-assessment for anyone experiencing grief or loss.
“It’s not a bereavement support group,” she said.
While Ms Hingston-Jones welcomed the inquiry’s recommendation for government funding, she said she’d be concerned if that came with any regulation.
“I think you’d have to be very careful about how it’s done,” she said.
“Death cafes that I run are very organic and free-flowing and I wouldn’t like to see that removed under the need for government regulation if there’s public funding involved.”
Death education just like sex education
Ms Hingston-Jones said it was predominately older people who attend her death cafes, but believed young people should also be taught about death.
“We have sex education in schools, why not death education?” she said.
“They teach sex education on the hope that we might have sex one day, we might not, but we’re definitely going to die.”
Ms Fenwick said death should be normalised with children, but it must be age-appropriate.
“Certainly if children are asking about death, if they experience the death of a grandparent or a pet, then they’re ready for the answers,” she said.