Molly Carlile: "the more we talk, the less we fear" on Dying To Know Day.
Molly Carlile AM ……AKA the Deathtalker
I’ve spent my whole career as a specialist clinician, counsellor, educator and manager working with dying and grieving people and passionately believe that it’s long overdue for the community to take back ownership of death from the medicalised model of end of life care that still persists in most western societies, Australia included.
To this end, seven years ago I became “the Deathtalker” and changed my focus from only educating health professionals about the importance of having meaningful conversations with patients about illness and death. I began to speak to ordinary people in the community, on the radio and TV about the very same things. I discovered the impact that the arts can have in creating a safe space for these conversations to occur while on a Churchill Fellowship in 2009 and came home from overseas filled with ideas for incorporating the arts into community and healthcare environments to get people talking about mortality, personal values, life purpose and end of life wishes. I’ve written books for kids and young people on death and grief and a couple of plays with my friend Alan Hopgood AM on palliative care and dementia. In partnership with the Arts in Healthcare program at the Olivia Newton-John Cancer and Wellness Centre I’ve directed a couple of films about patient, health professionals, volunteers and visitors views on death, grief and leaving a legacy. It is this combination of arts and health I believe will enable health professionals to explore their own feelings about inability to cure and futile treatment leading them to feel more confident in having end of life conversations with people they care for, but to me this is only a small part of the jigsaw.
We need to be informing, empowering and educating the community to take back ownership of their own lives and deaths. We need to be encouraging people to think about the “stuff that matters” to them and then to share this information with the people they love and to write it down. Questions like, “What is important to my quality of life?”, “Where would I want to die”, “Who would I want to care for me”, so that if an unexpected life threatening event occurs there is no family confusion about the wishes of the person, the family are able to take control and advise the health professionals of the person’s wishes and can then focus on spending the last hours with the person they love in a way that is meaningful for each of them.
Beyond this I firmly believe we need to be talking to our kids about death from a young age. It should be a normal topic of conversation just like “where do babies come from?” Very young children understand the difference between a dead bird and a live one if it’s drawn to their attention. Of course, it’s not until children are older that they understand the permanency of death, however by that time they could well have experienced the death of a loved one. Because parents want to protect their kids, they avoid the topic and try to shield their children from any conversations about mortality and when a family member dies, they are often excluded from the funeral and other rituals that accompany death, including expressions of sadness. This can leave them feeling both confused and their feelings invalidated. We protect our kids by providing them with information, not by excluding them, hence my motto “the more we talk, the less we fear”. There is so much work we need to do in this space, death literacy needs to be imbedded in primary and secondary school curricula and beyond that into tertiary programs, so that our next generations are informed, empowered and compassionate members of a death literate society… that’s my dream.
I became involved in D2KDay as the inaugural Ambassador at the invitation of The Groundswell Project Director Kerrie Noonan, a pal from the arts and health community and it was an offer too good to refuse. I spoke as “the Deathtalker” at the launch in Sydney in 2013 and conducted one of the first events in Victoria at the Olivia Newton-John Cancer and Wellness Centre at Austin Health with the support and hard work of a great team of volunteers.
I firmly believe in the mission of D2K Day and regard my involvement as a legacy activity for me… if I achieve nothing else in this lifetime other than improving community death literacy and therefore increasing the ability of ordinary people to regain control over how they die, and stirring communities into actively supporting their grieving members… I’ll be happy.
As a National Ambassador for D2K Day I’m thrilled to be speaking at the inaugural Hobart event supported by TAHPC, “Dying for a beer”… a nice play on words as the event is being held in a pub! Targeting story tellers, news gatherers and media, this event hopes to ‘spread the word’ on “The Apple Isle” through mainstream media.
Also in Tassie, there are events being held all around the state as part of TAHPC’s, Networking End of Life Care Across Tasmania project.
Calvary Health Tasmania are running a series of events “Dying to talk about it” which includes a session on sustainable approaches to death and burial.
Island Care in conjunction with the amazing Creature Tales team are conducting an event that invites residents to share their “life lessons"… a great way to hear the stories of wisdom from our elders.
Tassie are nailing it with eleven events registered…well done you guys!
Victoria again are kicking goals (‘cause it’s footy season) with events planned in Footscray and Brunswick on August 8th.
On July 21 The Active Ageing Group with support from the Yarra City Council conducted a “Dying Matters Forum” at the Richmond Town Hall. I’m was the keynote speaker and was joined in the forum afterwards by Dr Pia Interlandi (another of the D2KDay Ambassadors), Alan Hopgood AM, playwrite, Dr Julie Landvogt and Marion Lau OAM…it was a fun day with lots of discussion… 120 attended!
WA have nine events registered ranging from Death Café’s to trivia nights, exploring the “digital afterlife”, Eco friendly funeral options and meditation, sound and breath exploration of death.
In NSW and ACT eight events are scheduled including workshops, conversations in word and song, community forums, Death Café’s and Advance Care Planning sessions.
Queensland have a film program, Information session and “An afternoon in the Parlour”
In South Australia they will be conducting the very artsy “Before I die” project where they will be locating a trailer in public spaces all day and inviting members of the public to write on the board things they want to achieve before they die. Also the very creative Palliative Care South Australia are conducting a Funeral/Anniversary Cake contest “A cookery challenge that’s raisin the dead…Scone but not forgotten”…NICE!
There’s SO much going on, I can’t talk about them all, only say how thrilled I am that people are embracing this initiative both by running local events and online activities that join us all in a common purpose… to improve death literacy, demystify death rituals, inform and empower communities and encourage people to talk about stuff that matters, so that when it comes to your own death, or the death of someone you love, there’ll be nothing you’ll be “Dying to Know"
Wishing you all a most enjoyable and productive Dying to Know Day 2015,
Molly Carlile AM
RN, FACN, FAICD, AFACHSM, MAIPC, MACA
National Ambassador for Dying to Know Day August 8th
2014 Member of the Order of Australia (General Division)
Minister's Award for Outstanding achievement by an individual or team in healthcare,
2012 Victorian Public Healthcare Awards,
2012 Deakin University and HealthSuper Leadership in Nursing and Midwifery Award,
International Journal of Palliative Nursing, Educator of the Year Award 2012,
Arts and Health Australia Award for Health Promotion 2009,
Churchill Fellow 2008.