From fireworks made of ashes and wakes for the living, more and more people are choosing how they will celebrate their end of life.
ABC journalist James Valentine who passed away earlier this year after a high-profile battle with cancer chose a living wake and voluntary assisted dying to mark his end. Actor Nicole Kidman and Oscar-winning director Chloé Zhao both recently trained to be end-of-life doulas. Death cafes and ‘death over dinner’ clubs are becoming increasingly popular worldwide. Add to this natural burials, eco funerals, water cremation, fireworks containing ashes, and even a proposed bill to legalise human composting.
These examples highlight a shift in knowledge of end-of-life care and burial practices, as well as an increasing desire to have more control and choice in how we die.
“Death is being re-socialised and more part of the everyday,” says clinical psychologist, social researcher and director of The Death Literacy Institute, Professor Kerrie Noonan. “There’s more media and interest in thinking about and understanding options.”
While the financials and logistics of death have always been a begrudgingly accepted part of life for most, there is now starting to be more of a focus on another side that is empowered, celebratory and personalised.
“In the same way that we broke the barrier for mental health, we’re starting to break that barrier around conversations about aged care, death, dying, loss and grief,” says Professor Noonan. Death literacy is also improving. “Death literacy is our knowledge and skills that help us make decisions and inform choices about end-of-life and death care,” she adds.
With death literacy comes the opportunity to approach death with your preferences, wishes, personality and values respected. “Many of us have been to funerals that seem completely, utterly inconsistent with the human that we knew,” says Professor Noonan. However, more people are choosing to die in a way that reflects how they lived.
“Having access to end of life and death care options that align with our lives and the way that we live offers incredible comfort to those who are grieving, and is one of the most interesting changes over the last 10 years,” she says.
Death and dying are moving into the light
Helen Callanan, founder and lead educator for Preparing the Way, Australia and New Zealand’s leading end-of-life doula training organisation, believes it to be a generational shift.
“The older generations often do death how they experienced it in their younger life,” Helen says. “The younger baby boomers and those who are younger still are starting to want choice. They want to know what their rights and options are and are much more vocal. It’s a really lovely shift.”
The increase in media attention, as well as focus on advanced care planning from the government (including the new Support at Home program), are some of the key factors to account for the shift, Helen says.
With hospital beds at capacity and the high cost of dying in hospital, home based end-of-life and death care is becoming quite popular, she says.
“The most radical choice people can make is probably trying to die at home,” Professor Noonan states. “People are coming to realise that there are other ways of doing death and options they didn’t realise they had.”
Helen Callanan
Thanks to the generous spirit of people like James Valentine, who shared his journey to death so openly on ABC’s Australian Story, options like a living wake and voluntary assisted dying (VAD) are moving into the vernacular.
“Living wakes are one of the clearest examples of people really wanting death to be less hidden,” says Helen. “Why wait until the funeral to speak well of the person? Tell them to their face.” Not only do living wakes, or FUNerals, give the opportunity to acknowledge and celebrate someone we care about before they die, it’s also a way to communally express and process our grief, adds Helen. “It really is about making death more visible and can lead to healthier outcomes grief-wise.”
She considers VAD to be part of a much broader conversation about choice at the end of life. “Voluntary assisted dying is just as valid an end-of-life choice as palliative care,” Helen says. “They are not exclusive, nor do you have to choose only one. You can have palliative care and access VAD.”
Another support for end-of-life care is an end-of-life doula. “We work collaboratively alongside medical, allied health and other professionals to provide non-medical holistic support and fill the gaps in care,” Helen explains. People usually engage an end-of-life doula because they want to support someone or become more death literate themselves, she says. “We give people back the three C’s: choice, capacity and control.”
“Just like you can’t get pregnant by talking about it, you can’t die by talking about death.”
Helen Callanan, Preparing the Way
To do death well, you have to plan for it
Helen offers the reminder that with the choices available, comes a responsibility to advocate for yourself and others. “You can still have a voice even when you can no longer speak by completing and communicating your plans and appointing someone to speak for you,” Helen says. We don’t need to fear talking about death and dying. “Just like you can’t get pregnant by talking about it, you can’t die by talking about death,” Helen says.
“Planning for end-of-life isn’t morbid,” she says. “It’s one of the most practical and loving things we can do for the people we care about and especially for the people who care about us.”