Each of us that work with patients and families at the end of life has a story to tell.
Our work is chock full of emotion, ethical dilemmas, unanswerable questions, difficult decisions. We also witness breathtaking courage, and deeply inspirational sacrifices and love. Most of us no doubt choose to share our stories only with colleagues in the field. Face it, haven’t we all had the experience of a blank, sad face when we mention to someone outside the fold that we work with children at the end of life? Haven’t we all tried to assuage the fears and sadness in a casual conversation, offering the hope and inspiration that comes to us time and again from the people we meet and care for in our day-to-day work?
Telling our stories is both necessary to us and helpful to our patients and families.
Taking the time to debrief after a death or a family meeting is story telling. Reminiscing as part of grief work is story telling. Wishing to leave a legacy is a teenager’s profound hope for a story to live on after their time has past.
Honing our skills at narrative may prove as useful as any of our therapeutic tools. Think about it, getting good at narrative might even revolutionize our fundraising and community organization strategies.
Awe and wonder in daily practice
Recently, I had the opportunity to be interviewed about my work on a small radio show. The producer expressed interest in our new home care program for children with medical complexity. I knew it might be tricky to describe our patients to a general audience. I could imagine being at the mercy of an interviewer whose questions might focus solely on hardships and suffering, if only because she might not understand the ways the children bring joy to those around them.
So I offered to share a story I had written about a routine team meeting in a patient’s home. I told the story of a 2 year old boy with dwarfism on mechanical ventilation who joyfully, proudly rolled over for the first time. I chose to tell the story as an example of awe and wonder in daily practice, which I hoped would allow Charlie’s limitations and challenges to be seen in the light of inspiration and growth.
The response to Charlie’s narrative has been surprising to me. At the outset, I felt a bit uneasy about asking Charlie’s parents to share his story, worrying they might feel a trust would be breached. In fact, they were honored. My telling of the story served to give voice to their experience. Charlie’s mom and grandmom spoke of the tears that emerged. His dad expressed pride in his son’s new abilities.
Sharing the story publicly had its own anxieties. Would our program be misunderstood and seen as less medical? Would people understand its point of view, and share my sense of awe and wonder? I learned that the story itself draws people into Charlie’s life, and sharing his story allows them to intuitively understand what our new program is all about.
And lastly, my colleagues, the ones at the social functions, who are outside the world of palliative care have expressed a new appreciation for the broader scope of what we do.
Finding our voice through writing
There are many writers, of course, who are also doctors. Rachel Remen’s book Kitchen Table Wisdom comes to mind. Doctors like Remen illuminate the patient’s experience and use the narrative therapeutically, both for the individual and the reader at large. Frances Kakugawa, a Hawaiian poet, works with caregivers to give voice to their experiences through poetry. Her book Breaking the Silence shares some of these poems. When asked, Frances has story after story about how writing poetry has allowed caregivers to express their deepest longings.
Finding our voice through writing can be part of the discovery of personal identity. Giving voice to our patients’ and their families’ experience can serve to promote healing. Learning to tell our stories may be one of the most underutilized therapeutic and organizational strategies in palliative care.