In preparation for the Advance Care Planning Conference in Sydney, 2-3 May 2016, we spent a few moments with Molly Carlile AM, FACN, FAICD, Deathtalker® (www.deathtalker.com), National Ambassador for ‘Dying to Know Day’ and gained some insights into the focus of discussions on palliative care with regards to end-of-life management.
What have been some of the highlights of your career so far, in particular in your work around advance care planning and encouraging the community to have conversations about quality of life and end of life wishes?
I’ve spent virtually my whole career working with dying and grieving people in a range of roles, from on the ground clinical care to counselling and management of large palliative care service providers.
For me, the need to get community conversations happening so that people can be better informed and empowered to make choices about their end of life care has become a primary focus. As a result of my Churchill Fellowship in 2009, I discovered how the arts can assist in creating a ‘safe space’ for these conversations to happen and since then have co-authored two plays and written a number of books (two for children) about death and grief. Arts based approaches engage and ‘stretch’ people to think creatively about this often difficult subject.
Of course, having my work recognized in the 2014 Queen’s Birthday Honours, being awarded an Order of Australia, was an amazing highlight, but the bottom line for me is when someone comes up to me after I’ve given a talk and thanks me for helping them to think differently, that is the ultimate reward!
You are presenting the keynote closing address at the Advance Care Planning Conference , regarding ‘ACP: Realistic Expectation for All or Mere Rhetoric’, without giving too much away about your upcoming presentation, are you able to explain some of the key problems you feel need to be addressed before the community will think an ACP is a worthwhile investment of their time.
Before anyone considers investing time in advance care planning, they need to confront their mortality. This is our major challenge, as people always think they have ‘plenty of time’ and yet none of us know what the future holds. When a person chooses to invest time in conversations about their wishes and documents them, they need to be assured that their ACP will be followed (and that they have the ability to modify it based on changed circumstances), which we currently cannot guarantee, it is so clinician dependant. The other issue is the lack of standardized regulation across jurisdictions which means in some states Advance Care Planning is an official document and in others merely a guide.
You are the National Ambassador for Dying to Know Day. Would you like to explain what this day is all about?
Dying to Know Day, launched in 2013 by The Groundswell Project is a national day to talk about death. The whole aim is to improve community death literacy by conducting events in local communities that are meaningful to them and facilitate conversations. It is a ground up movement that inspires local communities, be they social, geographical or common interest communities, like sporting clubs, to plan and conduct an event with a ‘mortality’ focus.
This can be anything from a ‘Death Café’ to an art exhibition, a music event or a memorial event. The power of D2K Day is that it’s community driven, but all of the resources they may need to promote their event and to support running it are provided for them on the website.
In the three years we have been running it participation has exploded and last year we even had communities in the U.K, U.S and Canada conduct events, we are hoping to see it will grow further this year.
Are there any presentations from the Inaugural Advance Care Planning Conference that you are particularly looking forward to?
I’m always very interested in the experiences of other people, so I’m reluctant to nominate a particular presentation. There is a great diversity of speakers and I’m very keen to hear how people are addressing ACP across the life cycle for different regional and cultural populations.
Molly is one of the 13 speakers at the Advance Care Planning Conference (2- 3 May 2016 | Swissotel, Sydney). The event will bring together clinicians, therapists and palliative care providers to discuss the process, systems and management needed to ensure patients have greater choice and control in terms of their support needs, treatment goals and options while in critical and chronic care.