Once Upon Your Story: The award-winning Eastern Palliative Care volunteer-based biography service
An article written by Krystal Wallis, Program Development and Volunteer Services Manager, EPC
At 38 years of age, I was busy with a thriving career, marriage and 3 young children. An advanced breast cancer diagnosis at 39 changed all of that. Suddenly it was imperative that my children remember me and that they know how much I love them. Enter Eastern Palliative Care (EPC)….
The task is enormous, and I quite literally would never have found the energy or know-how to do this on my own. We have created a beautiful piece of written art for myself and my family … a priceless gift (Kristy—EPC client)
The ‘why’
In 2005 EPC commenced the process of initiating a volunteer-based client biography service. At the time it was a new method of therapeutic intervention in Australia. Storytelling has always been a universal powerful tool used to maintain one’s heritage, to hand over important traditions and rituals and to convey lessons to be learnt. It is a means of passing on what matters.
A high number of our clients choose to revisit painful memories or share secrets with their biographers that they never want recorded in the story. Comments such as ‘I don’t want this written in, but I just needed to tell someone’ are commonplace. There is safety for our clients in engaging in honest conversation with their biographers and all of this can contribute to a more peaceful death on behalf of the client.
Engaging in the process also allows the client to place the current medicalised experience of a palliative illness back into the broader context of their life – to understand their current ‘care recipient’ role is not what ultimately defines them. It allows each client to reconnect with the essence of who they are and remember they are larger than their diagnosis. EPC clients report a rise in a sense of wellbeing and a decrease in levels of depression, anxiety, breathlessness, and pain as a result of the biography intervention.
Since the commencement of the program there are now close to 100 volunteer biographers working with Eastern Palliative Care and, as of November 2023, over 1,596 biographies have been published.
Beyond EPC
Due to the sheer size of the work and the numbers of clients that EPC has worked with, the organisation has considerable knowledge that covers not only the practical ‘how to’ of this work, but also the issues that are raised in the legal/ethical and moral domains.
Recently a three-year PhD project was undertaken by researcher Karly Edgar, in conjunction with La Trobe University. This demonstrated that EPC is a leader in volunteer management within this therapeutic modality. It understands the pressures and costs that this type of work has on volunteers and has learnt the strategies needed to recruit, engage, manage, and retain volunteer biographers for the long term. You can listen to Karly and Krystal discuss overview of herthe research and program implementation on EPC’s award-winning biography program in the Once Upon a Research Story podcast series.
EPC has set the national benchmarks in independent auditing for volunteer management and in 2023, EPC launched its Centre of Volunteer Excellence, formalising the training offers they have always run for other organisations. They are now able to train and mentor the managers of volunteers as well as the volunteers themselves in the process of biography.
For more information on EPC and its biography service, contact EPC via their website: https://www.epc.asn.au/contact-us or phone 1300 130 813.
The final word
I had an operation to remove a cancer 3 years ago. It’s been a tough year – actually it’s been a tough life for me. I’ve had a pretty colourful life. There has been one drama after another so it’s no surprise that the end is full of drama too. It was really good when the palliative care team offered me biography. I had been looking into it and was trying to have a crack at it myself– but I didn’t know where to start or finish. Without this opportunity, it would’ve been ten times harder for me since I’m semi-illiterate and I don’t have years to get it done.
(Dion—EPC client, 39 years)
Authors:
Krystal Wallis
Program Development and Volunteer Services Manager
Eastern Palliative Care Association Inc