Helping people make sense of their lives is consistent with the spiritual and holistic approach of palliative care. For example, bringing to conscious awareness those events in life that have been formative may help bring closure and improve the person’s willingness to accept the inevitability of their own death. Reflecting on the care given can also help understand the person better.
Life stories, or biography writing, involve a simplified recording of the person’s life in written and/or photographic formats. A patient ‘biography’ is much more intimate in nature than a public biography. It tends to focus exclusively on what the person wants to share and may skip elements or periods of their life.
There is no greater agony than bearing an untold story inside you.Maya Angelou
The aims and goals vary from service to service and might include:
- Recording the experiences of the person for their family and friends. A skilled biographer may create a valuable artifact and memento which can be enjoyed by family and friends. For parents who are dying and leaving behind young children a biographer can help capture the depth of love felt by the parent, and their hopes and aspirations for the lives of their children.
- Validating the life of the person. By spending time with the person, and by simply checking-off facts and events, the biographer can communicate a sense of acceptance and so validate the life of the person.
- Creating awareness of maladaptive feelings. Encouraging reflection on events which might eventually bring the person relief from feelings of bitterness and regret, directly or indirectly (perhaps as a trigger to seek counseling).
There is a particular skill in writing biography so managers and volunteers would benefit from training. Training costs are not insubstantial, and as manager you should weigh-up your own interest and skill in biography as an important element of the potential success of the program. You may well be the person best equipped to train future volunteer biographers in the service.
Some considerations in managing volunteers within a biography service:
- The volunteer is very present in the role of the story telling, and therefore they must be empathetic and interested by nature and involved in celebrating and reflecting when composing the story.
- Volunteers for biography writing will need good emotional intelligence and be able to draw-out a narrative from the person’s account. Making sense of the chronology of a person’s story is also important as this may not flow naturally from a simple discussion.
- As a manager you may not have the time to debrief the work of the biographer in detail, so ideally you would want to engage volunteers who are able to work quite autonomously and without intensive support.
- Biography requires time. Where referrals are being sent through to the volunteer service with insufficient time to engage with the person before their life ends then biography is unlikely to be successful. The volunteers must also be willing to put the effort into writing-up the story that emerges and revisit the patient until there is a sense that the writing is complete.
Additional resource – See the Agency for Clinical Innovation’s ‘Collecting Patient & Carer Stories: A Guide for Frontline Health Service Staff who wish to Understand and Improve Patient and Carer Experience (2014).