Molly Carlile. Photo: supplied
Few people can genuinely say they changed the course of a field. Molly Carlile AM can. On the eve of her retirement, she reflects on her journey with ANMF.
Molly Carlile started nursing in 1982. An accident that broke her back ended her clinical career around the turn of the century, so she reinvented herself in ways that still reverberate today.
‘I did my postgrad in palliative care, I did a grad dip in grief and loss, I got a grad dip in counselling, I got an education degree,’ she tells ANMF. ‘This is how my career evolved: every time I didn’t feel confident with a thing, I went and learned about that thing.’
Molly has won numerous awards and accolades throughout her storied career – including the Victorian Public Healthcare Minister’s Award, the HealthSuper National Nursing and Midwifery Leadership Award, the International Journal of Palliative Nursing’s International Educator of the Year Award, and the National Leadership Award for Arts and Health. In 2014, she was made a Member of the Order of Australia for her significant service to community health and to the performing arts.
For the past three and a half years, Molly has led the Program of Experience in the Palliative Approach (PEPA) and the Indigenous PEPA program of Victoria, part of the national Palliative Care Education and Training Collaborative at QUT, that runs in Victoria through St Vincent’s Hospital. But over the past two decades, her work in palliative care helped usher in one of the biggest changes in Australian healthcare history: voluntary assisted dying (VAD).
Before that, however, she first had to change her own mind about it.
On coming to terms with voluntary assisted dying
‘Very early on, I got interested in emotional intelligence and did a lot of work with the Goleman model,’ she says. This has informed her life’s work.
‘The whole person approach to nursing doesn’t start with the person in the bed,’ she says. ‘It starts with you.’
Elaborating, she explains: ‘Managing your own stuff first is as important as building the relationship with patients, families and colleagues. You can’t skip this bit. You have to keep asking yourself: What’s triggering me here? Why am I feeling anxious in this situation? Is this my stuff, or is this environmental stuff?’
Molly shares a story to illustrate: ‘When the conversations were first happening about VAD, I sat on a panel with Andrew Denton and he was talking about his father’s death,’ she begins. ‘My argument at that time was that if we were doing palliative care properly, there’d be no need for VAD. And inside my head I was thinking: what would you know?! You’ve only ever seen one person die. I’ve seen heaps of people die!’
After that event, however, Molly began to think more about her own response. ‘I thought: why do I feel so threatened by this? What is it about this that is making me defensive?’
She soon realised that she was taking the idea of VAD as a reflection on the care she and her colleagues provided in palliative care. ‘And then I thought: I’m always saying we should be providing person-led care. But if I believe in person-led care, what right have I got to deny a patient an option? So I had a total turnaround; I became a complete and utter convert.’
After her ‘epiphany’, Molly rang Andrew to apologise about how she responded on the panel. They soon became friends and have worked together throughout the years. ‘I ran into him at a conference last year, and he said to me: “I still tell people about the day you rang me up and told me how you changed your thinking. And it still blows me away that you had the insight to ask those questions.”
‘But we should all be asking those questions, all the time,’ Molly says. ‘We don’t say to people: we’ll look after you, but you can’t have that medication. It’s either person led or it’s not.’
Molly became a loud and proud advocate and leader in the space. She joined Victoria’s VAD implementation advisory group, helping to guide the direction of Australia’s first VAD frameworks. She was on the state’s VAD review board for the first four years.
Change doesn’t comes easily, however. There were a lot of people in the sector who objected, as she once had. ‘Through that time, it was really difficult,’ she says. ‘I got called a traitor and a sell out and an enemy to palliative care. But at the end of the day, it wasn’t about me; it was about giving people choice about their life and their circumstances, and it’s not my right to say you can’t choose this or you can’t choose that.’
Arts and health
‘I’ve always been a creative,’ Molly says. ‘I love writing and I’m a painter. I use painting as a way of meditating, because while I’ve never been very good at meditation – I can’t keep my mind still long enough – I like that when you’re thinking about shape, tone, colour, there’s no room in your brain for anything else.
‘And what comes out is never wrong, because it’s about using colour, shape and light to express what’s in here,’ she says, pointing to her heart. ‘So it’s just such a beautiful way of keeping yourself sane and healthy and happy.’
Molly also uses art to understand herself, specifically her neurodiversity. ‘I know I show all the traits of autism,’ she says. ‘We’re a very neurodiverse family, and coming to that realisation about myself, I processed it through my art practice.’
In the mid-naughts, Molly became interested in the arts and health movement, which she explains is not about art therapy or behavioural change. ‘It’s about creating an arts environment that enables people to express thoughts and feelings that can engender emotion,’ she says.
After receiving a Churchill Fellowship in 2008, Molly travelled to the US, Britain, France and Ireland to learn more about ‘arts-based approaches to initiating community conversations about death and grief.’
She built what she learned into her day-to-day work for years. She wrote three books about death and grieving: Jelly Bean’s Secret, a children’s novella; Sometimes Life Sucks, a guide for teens; and, most recently, The Death Talker, which she describes as ‘the culmination of 25 years working with real people, answering questions and listening to their stories as they face their mortality.’
She also co-authored two plays about death and grief with actor and AWGIE-winning playwright Alan Hopgood AM, exploring the role of storytelling in the lives of dying patients and their carers.
‘Everything I’ve written has been fictional, but the stories I’m telling are thematic and lead to people thinking more deeply about the importance of open and honest conversations and planning and thinking ahead and finding the joy in every day.’
Not dead yet
As she reflects on the pivotal points that changed her throughout her career, and the change she helped usher in, Molly muses on her legacy: ‘if even five people picked up a message about knowing themselves better, or about committing to compassionate, person-led care, I’ve done my job.’
But while she may be leaving her job behind, her work continues. ‘I have a lot to say. Now, unconstrained by the system, I feel I’ve been liberated to a point of saying what I really think and feel and putting that out there. So I’ll pop up somewhere when people least expect it,’ she adds. ‘I’m not dead yet!’
