It is a certainty that will befall us all, but talking about it can feel morbid and distressing.
While most Australians spend months planning birthday parties and weddings, new research shows two-thirds haven’t discussed what they want to happen when they die.
Not being “death literate” can cause additional stress and anguish for the person dying and their loved ones, warns non-profit The Groundswell Project, which conducted the study.
“Sadly, this can mean that end-of-life experiences are not aligned with an individual’s values, preferences or wishes,” spokesperson Cherelle Martin says.
Nearly nine in 10 of the 1027 Australians surveyed said end-of-life planning was important, but some found the topic too emotional to think about, others didn’t know where to start or where to get help, and many didn’t understand what choices they had.
Planning can be more upsetting when death is imminent, so starting the conversation when we are younger and healthier is a good idea, says Ms Martin, adding Groundswell has launched a campaign to encourage Australians to “get dead set”.
It is crucial to have these conversations with health professionals and family members so everyone is on the same page at that final stage, she says.
Groundswell developed a resource to help health professionals understand the First Nations’ tradition of “yarning”, a form of end-of-life planning where people come together to discuss what they envisage for their death in a community setting.
They are also working closely with the LGBTQI community to understand where challenges may lie for people in that community and to ensure their needs are being addressed.
“Even the challenge of discussing exactly what families are aware of when someone is at end-of-life and how much has been shared with the extended family,” Ms Martin tells AAP.
“What do the staff know, how can they manage an environment where somebody may or may not have shared what their home life might be like, what their lifestyle choices are.”
Loved ones need to be prepared to advocate on behalf of the person who is dying, Ms Martin says.
“So many people have indicated they want to die at home but it takes so much effort and planning to actually put that in place,” she says.
“Everyone around you needs to know what you want, even if just to communicate with the ambulance: ‘This person actually wants to die at home’.”
Starting these conversations with loved ones can be confronting and raise conflicts but they can also be revelatory, Ms Martin says.
“Everyone walks away from these conversations learning something new about that person, even someone of a certain age when you thought you knew everything about that person,” Ms Martin says.
“It gives people the space to have some really beautiful conversations when you start to unpack and understand somebody’s values.”
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