Meeting a Death Doula
Words by Nikki Stefanoff
Photos by Mathew Bate and images courtesy of Portable
Helen Callanan has been working with people approaching the end of their life for over 30 years. What’s one of the major things she’s learned from all her experience? How to live.
Death. I could take it or leave it, really, but I’m pretty sure it’s not for me. Do I want to talk about it? Nope. Think about it? Not really, unless it’s 3am and then, yes, thank you, I do that all the time. Yet, death is coming for me and, I’m sorry to say, it’s coming for you, too. It’s the one bond we all share and I bet, like me, you’re doing everything you can to avoid thinking or talking about it. Yet the story goes that it’s this refusal to talk about it that’s causing all the angst, which is why when I found myself invited to a ‘death dinner’. What else could I say but: ‘Sure, where should I sit?”
Hosted by the Melbourne design studio Portable, the death dinner was part of a 13-month R&D project into the future of death and ageing in Australia. The studio had already put on very successful death drinks, asking Melbournians to take a moment to have a beer while designing their own deaths.
“We started looking into the subject of death and ageing in Australia after a couple of members of our team had some personal experiences that really opened our eyes to the fact that things don't [always] work smoothly,” says Sarah Kaur, COO, Portable. “We’ve got a great internal R&D program, and in our work for clients, we use design and technology to help in areas of social need and policy failure [so] when we saw how complex the experiences around death and ageing are it hooked us.”
So on a chilly August night, and over three courses, I sat and listened to everyone from product designers to artists to those working for the State Government talk through potential future issues. It was here, amongst the chatter of cemeteries, aged care facilities and health insurance, I was first introduced to the concept of an end-of-life doula.
The idea of an end-of-life doula was so fascinating to me. While the dinner was proving to be an intriguing delve into the future of death and ageing I began to feel that all this talk of technology, products and services and governance would be of little comfort at ‘The End’. Yes, it’s wonderful that robots are able to administer medication and how soothing that we can have our ashes made into a diamond to be worn by a loved one but, really, when it comes down to the nitty gritty I’m pretty convinced we’ll all want the same thing – love and support. From a human.
Enter the doula.
“Here’s the thing, Nikki, death is a 10/10 statistic. It’s the only thing guaranteed. They say the only things we can be sure of are death and taxes but taxes can be avoided,” laughs end-of-life doula and educator for the Australian Doula College, Helen Callanan. “It’s crazy that we all know it’s coming but it’s the thing we least want to talk about, although, it is changing and I put that down to the baby boomers and more accessible death literacy education. The baby boomers are currently the biggest part of our demographic and have more to say than previous generations and so they are starting to drive a movement. There’s a silver tsunami coming, the number of people over 65 will double by 2050, which will bring a wave of aging and death the likes of which has never been seen.”
Callanan quotes The Groundswell Project when she says the problem with dying started around 90 years ago when we, as a culture, decided to outsource death. “Our grandparents and great grandparents took care of their dead and dying at home, that was how it was done. In the West we outsourced it, out of our homes and into hospitals, into aged care facilities and into the hands of funeral directors,” she says. “In doing this we lost our confidence, our capacity and knowledge and we made death invisible. Death has become a very medicalised event because the business of a hospital is to fix, cure and prolong life.”
Conversations around death are amongst the most important to have as the stats show that between 70 and 80 percent of people say they want to die in the comfort and intimacy of their own home but only between 16 and 20 percent manage to do so. Callanan states that one of the contribution factors to this is that there are insufficient community based resources to support people and those caring for them to die at home. “There is a piece of research carried out by Western Sydney University called End of Life at Home: Co-Creating An Ecology of Care where they mapped the networks of people and found that it takes an average of 16 people to support someone dying at home,” she says. “In nursing homes, hospitals and palliative care units there are times insufficient staff, due to budgetary and staff ratio constraints, to deal with the needs of the dying person and their family. There is a gap and as end-of-life doulas we can assist in bridging that gap. We work alongside the palliative cteam, the nursing team and the medical team to provide comfort and care as well as information on resources and support. We’re there when the medical and nursing world can’t [be].”
“There's a silver tsunami coming."
“I started to think about what it would take for me to say ‘yes’ the minute death calls my name."
Callanan describes the doula’s role as being less about giving out hugs and clasping of hands and more a role which provides support, education, options and resources to both the person who is dying as well as their family and those close around them. The irony is that while you, or a loved one, is in the midst of dying life doesn’t stop and wait for you to catch up, this is where a doula can help. Think of a doula as being a support system - an advocate at appointments, running errands, bringing meals and using their extended networks to source resources as well as support. Then, when someone is in the active stage of dying an end of life doula attends to their needs, giving the family a break.
“We are in no way playing a medical or nursing role.” she explains. “We can sometimes experience resistance from the medical and nursing profession and so part of what I do is to educate professionals about what the role of an end-of-life doula is.”
I didn’t realise it but when I first started talking to Callanan I went in with the hope she might make me feel better about dying and she did. There’s something refreshing about talking about the inevitable with someone who has no limits or boundaries, however, her real pearls of wisdom came after I asked what she’d learned after surrounding herself with death and the dying for 30 years. “I realised I didn’t want to die suddenly as I knew there were things I hadn’t done in life that were on my bucket list,” she says. “I started to think about what it would take for me to say ‘yes’ the minute death calls my name and I realised I needed to organise my ‘stuff’. As we speak I have someone here helping me sort out a load of plastic tubs full of things - she’s here for four days to help me remodel my space, which will give me the room to work and live more freely.”
Her comment made me realise that I’ve been thinking about death all wrong. My focus has always been on the dying part but maybe it needs to shift more to the living side of things. A life well lived is, after all, much like those plastic tubs of Callanan’s - messy, full of crap and constantly in need of sorting out. Yet, if you’re lucky, it’s also full of adventures, stories, cringe worthy regrets and, possibly, a forgotten memory or two.