Volunteer program publishes over 1,000 biographies for terminally ill patients
Since 1992, Members of the Order of Malta in Victoria Australia have been involved in home based palliative care services in Melbourne and are currently partners in the Easter Palliative Care Association (EPC)*. EPC provides both terminally-ill clients and their families with medical and nursing services, psycho-social (social work, counselling, volunteers, music and massage therapy) and spiritual support.
One of the more unique services provided is the Biography Program. This initiative, undertaken by volunteers, gives each client the opportunity to be seen, to be heard and to be valued.
“The thing I have enjoyed the most is my biographer’s ability to make my achievements in life seem very important.”
For clients engaging in the biography process, the telling of one’s story is often therapeutic. It is an opportunity to reflect and reminisce on their life, and in this way, validate their achievements and give meaning to a life lived. Many participants see biography as a means of leaving messages, beliefs, philosophies, instructions and family history. All of this can contribute to a more peaceful and accepting death on behalf of the client.
“I love my biography – I keep reading it. It was great retelling the past. My children and grandchildren will love it. I mostly did it for them, but when I read it, I feel so much joy and satisfaction.”
The Biography Program also allows the client to place the current medicalised experience of a palliative illness back into the broader context of their lives – to understand their current role, as a care recipient, 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. Clients who engage with this program report a rise in a sense of wellbeing and decreases in levels of depression, anxiety, breathlessness and pain.
“A record has been made of my life, something ordinary and common place but unique to me. It is something I would not have done on my own – good intentions, but I put things off while getting on with the business of living. Biography has helped me face issues that have been buried for years – to look at.”
Importantly, the biographies do not only help the clients. Families in the bereavement phase often report how valuable and meaningful the biography is to them. Material from the biographies are often used in eulogies and, in numerous cases, families have been known to print additional copies and send them around the world to family and friends.
“It helped to release feelings and emotions, reflections, future thoughts/emotions and closer bonds to family.”
Owning the biography is a way of continuing bonds being fostered for those who are left behind.
“It has given us great relief and makes us feel that we all still have a close connection with him. The biography helped give us closure and the ability to look back on aspects of his life. One of the most precious parts is the messages we received from him in the biography and his feelings and thankfulness for his life and his family.”
Volunteer biographers commit considerable time to this program and consistently participants report the most enjoyable aspect of the biography process is the regular interaction between themselves and their biographer. Using digital voice recorders, volunteer biographers assist clients to record their story. Later this is transcribed, focusing on maintaining the client’s voice and editing only when necessary. All stories are worked on by the biographer and the client with a constant checking and rechecking occurring at each visit. It takes between six – ten visits to collate one story and published stories have ranged in length from two pages to 170 pages.
The final piece can be presented in varied ways and enhanced with photos, drawings, poems or other mementos. Each client is given two hard copies and one electronic copy of their story.
In 2018 EPC’s Volunteer Biography team won the Minister for Health Volunteering Award for ‘Outstanding Achievement by a volunteer: Improving Patient Experience Award’
Currently there are 94 volunteer biographers and as of October 2018, over 1,000 biographies have been published.
The Order of Malta has seats on the Committee of Management of EPC. Members are volunteer biographers and engage in fundraising for the service.
*The Eastern Palliative Care Association is a partnership between the Order of Malta, Outer East Palliative Care Service Inc and St Vincent’s Hospital (Melbourne) Ltd.
“We have created a beautiful piece of written art for myself and my family…a priceless gift.”
“At 38 years of age, I was busy with a thriving career, marriage and 3 young children. I had achieved a perfect lifestyle for me, with a nice house, healthy and happy children, lots of social outings with friends and family and a loving husband. Why would I bother with a biography? Surely that was an activity reserved for celebrities with sordid tales to tell, or the elderly with their years of wisdom and tales of long ago?
An advanced breast cancer diagnosis at 39 changed all of that. Suddenly it was imperative that my children remember me; that they know how much I love them; and that they know about the wonderful life I have lived, and am still living. …
Enter Eastern Palliative Care, and Lee, my biography fairy godmother…. I felt comfortable with Lee from the first meeting, and knew I would enjoy this process. Lee travelled with me through early childhood, first dates, weird and wonderful happenings and everything in between. Lee took my hand and we set off together on a fun and illuminating journey of life. Lee’s enormous kind heart, patience, sensitivity and beautiful manner were apparent from the beginning. Every week she would take a day out of her schedule to meet with me and record my words… 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 Pittaway (Biography client)
Volunteer Biographer, Lee Ewing with client Kristy Pittaway
