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words

Charlotte Young

images

Eastern Pallative Care

Charlotte hopes that

we in the ‘developed

world’ become more

accepting—and less

afraid—of death.

Readers who are familiar with Barefoot will know how much we love and value the importance of people’s stories—the desire to share their words/experiences is one of the driving forces behind what we do. So it was with much excitement that I went to meet Jenny Kearney and find out about her work and her team of volunteers, at Eastern Palliative Care, who are willing to sit and record people’s life stories: ‘Our biographers discover very quickly that they jump into a deep and inti-mate relationship with the client because they’re virtually sharing their whole lives’. The clients are either terminally ill or have life limiting illnesses.

Jenny Kearney was looking forward to retirement after twenty years running a community based service, writing and producing educational pro-grams. She soon found though that doing nothing didn’t have the same attraction she’d thought it might! After completing the home-based course of volunteering at Eastern Palliative Care (EPC) she felt unsure about going ahead, knowing she had a whole range of other skills to offer. Then, ‘a nurse had just returned from a conference where she’d heard a woman from New Zealand talk about writing people’s biographies in palliative care. Well, bells and lights and whistles went off for me and so I put myself on a plane and went over and did the course in New Zealand, came back here and started working as a volunteer,

but doing biography.’ Later, funding was secured to establish the program at EPC and Jenny was appointed as project officer. She is now in charge of training and overseeing sixty five volunteers and this number is steadily growing. ‘We’ve also trained other palliative care agencies all around Australia. This has enormous application as well in aged care and rehab.’

Biography work with the dying was started in the early nineties by Doctor Ivan Lichter who was in charge of the Te Omanga Hospice in New Zealand. He noticed how his patients were feeling depressed and that life no longer held meaning for them; it had become worthless. Jenny remem-bers, ‘walking through that hospice—it was my first experience of a hospice situation—and we were taken on a tour. As I peered into the rooms I’d see lonely figures hunched on beds or chairs, bent over, looking like they were just waiting to die’. Dr Lichter knew that their low self esteem led to depression which in turn often led to a long and lingering death. ‘And of course in a hospice situation what we’re hoping for, for every client is a peaceful death. Dr Lichter thought that an opportunity to reflect on their lives and become engaged in something that was more a celebra-tion of their life might be useful so he involved the staff in this concept of biography. Obviously he saw the benefits of it straight away’.

Ordinary people doing extraordinary things...Volunteer biographers—making meaning out of life and death

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Volunteer biographer, Pam had this to say about the process, ‘When I first started biography, I had the impression that it was all about the story, leaving something behind. I was surprised when I heard that the emphasis was on the therapeutic benefit, the process of the activity. I wasn’t dubi-ous, but I couldn’t understand that until I saw it for myself. Now I know...I have seen clients in pain when I turn up, having difficulty moving and by the time the session is over, I have realised they haven’t winced for all the time I have been there. But my favourite observation is that I see their eyes change. They go from dull, almost with no hope or enjoyment to sparkling. They become young again. When they are remembering their past, they giggle, sigh, smile or even cry but it’s always with affection in their eyes and I realise that I am seeing the person that is inside, instead of some-one with an illness. The illness disappears for a while. I realise that it is the process of the biogra-phy that is doing that.’

With a terminal illness often the symptoms and medical attention can overtake everything else about life and be all consuming. The biography allows them to step back and see their life in the context of the whole, not just in the context of the illness. Jenny emphasises, ‘The clients really, really appreciate the opportunity to reflect and review. It’s an escape from their illness. It’s a chance to set the record straight; tell the story how they want to tell it not how they think other family members might tell their story. It’s also a chance for healing in their relationships and to reflect on the emo-tional and spiritual aspects of their life and on dying and what it means’.

As a biographer, death would surely have to figure somewhere in your comfort zone to want to go and sit with a dying person and listen to them reflect and remember their life. Making meaning out of life would also have to be central to your way of being; to share your time with them whilst they shared their story with you. Jenny mentioned more than once how special the volunteers are and how integral to the process they are: ‘There’s

something incredibly valuable about the client-volunteer relationship that doesn’t exist with a pro-fessional. Something about the power differential; volunteers are not there for any other reason than to just be there with the client. They are someone from the community wanting to hear their story. The biographers are not paid to be there and there’s no agenda in the receiving of the informa-tion. One client said in the review, afterwards, “Thank you for giving my life back”’.

Listening to Jenny speak made me imagine what it must be like to be trapped inside a body that no longer works with ease; what it must be like to be bed bound, lying in the jaws of death wait-ing to be swallowed into the unknown. When do we become ready for the final letting go of our life and body? And even if we are ready there’s bound to be someone in the land of the living that doesn’t want to let us go. The biography process offers meaning to the present suffering, to the life lived and also to the imminent death; I was fascinated to know (suddenly seeing it as a kind of bridge or transition into death) if there was a cor-relation between the completion of the biography process and the timing of the death. ‘I’m not able to comment as a professional but I can tell you anecdotally it is not uncommon for our clients to die once they’ve finished telling their story. I remember one biographer was going to deliver a biography on the weekend but she got the call on the Saturday morning to say that the client was in hospital, dying and could she deliver it in there. So when the biographer went into the room the client was in one of those hospital beds and he was at that stage where the breathing gets very heavy and quite laboured. So the client was quite comfortable—it’s really important to understand that breathing at the end of life can often sound heavy, slow and laboured but the person is in fact quite comfortable. But he was actually holding on to the bars of the bed quite tightly and the volun-teer just said, “John*, I’m here and I’ve got your biography,” and she placed it on John’s chest and he let go and put his arms on the biography and

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he just breathed and died. We also have stories of the biography being read to the dying client, as they’re moving in and out of consciousness. There’s no doubt that the biographies assist in that process of a peaceful and resolved death. It’s extremely powerful.’

Once the biography is published it takes on a whole new meaning, especially if the client is still alive. There are a lot more questions for the family to ask, a lot more conversations to have around the biography. The published work also becomes a wonderful grieving tool. There are many lovely tributes to family, and messages. Families often get a new sense of identity themselves, ‘It’s a very rich and rewarding experience for the client and for their family but also for the biographers—they love their work. Every story has a beginning, a middle and an end. It also has a future. I think in all of these stories the reader takes something away. For our biographers it’s those life learnings

that we learn from these people. For families, chil-dren and grandchildren it’s a wonderful legacy: to learn how to die well and to learn that death is a part of life. We don’t talk enough about it but most clients end up reflecting on the fact that they’re dying and I think it’s a gift to other generations about how to die’.

*Name changed for reasons of privacy.

cont...

Ordinary people doing extraodi-nary things