Ending Stories
Because stories are the medium by which we express and absorb meaning, they can have a healing quality. It’s not surprising that storytelling is becoming more widely used in medicine, especially in end-of-life care, where the need for meaning-making tends to spike, the focus of care is less curative and more palliative, and the physical, psychosocial, emotional, and existential aspects of wellness are viewed in a more integrative way.
Using narrative in end-of-life care goes by various names: dignity therapy, life story work, life review, client biography, to name a few. These are all different versions of a similar process, and here’s how they work: a nurse, a therapist, or sometimes a volunteer, sits with a patient who is near the end of life. The patient is asked to tell their life story, and their story is recorded, transcribed, reviewed with them, edited, and given back to them and/or a loved one. Storytelling interventions at this crucial juncture have been shown to have positive impacts on patients and families; for the community the resulting stories offer an insight into death and its attendant reflections.
For the Patient
For the patient, having their stories recorded and transcribed offers the opportunity to create something that will survive their death. In a piece about dignity therapy on NPR’s Morning Edition, Alix Spiegel interviews Harvey Chochinov, creator of dignity therapy, who says that for many people, the most difficult aspect of dying is the idea that they will completely cease to exist after death. The ‘legacy’ or ‘generativity’ document that Chochinov’s patients receive in dignity therapy is meant to abate the fear of being forgotten. This, in turn, creates a sense of having contributed to the wellbeing of future generations, and thereby buoys the patient’s sense of dignity.
In one study about the impact of dignity therapy, family members reported that the intervention improved a patient’s sense of meaning, purpose, quality of life, and preparedness for death (see that abstract here). This suggests, at a fundamental level, that listening is an act of love, and the aim of these biographical interventions is to create a supportive environment where the patient feels safe to express themselves (‘Listening is an Act of Love’ is the slogan of StoryCorps, and the title of their first book.) Older people in care homes tend towards the lonely end of the spectrum, and for them this kind of intervention offers an engaging form of companionship, albeit brief.
Another study shows that the process offers the patient a chance to reflect over their life and reorganize their prior experiences. This might seem like something everybody does at the end of life, but for many people it does not occur easily or automatically. Storytelling is a safe place to work through difficult emotions, and a biographical intervention offers a final opportunity to resolve problems encountered earlier in life. Sometimes we all need a helpful nudge in the meaning-making direction, and telling one’s stories can instigate a tremendous unburdening, a catharsis which in turn can ease the process of letting go and saying goodbye.
William Breitbart drives the point home in Alix Spiegel’s story, mentioned above: "The prevailing mythology is that you die the way you live, and you can't change yourself in any way. The fact is that the last few months of life — because of the awareness of death — create an urgency that facilitates growth and change."
For Families and Loved Ones
For a dying person’s kin, the stories they receive can be helpful during the bereavement process. In many cases, people use excerpts from these transcripts in funeral ceremonies, and many family members anticipate finding long-term comfort in their beloved’s transcript. If a family member is invited to participate in the interview process (à la StoryCorps), it can strengthen the relationship between the interviewer and the dying person. And the information conveyed in the transcript can be important for generations to come, because it preserves a thread of a family’s oral history.
For the Community
But what do these end-of-life stories have to offer to community as a whole? Could these documents offer us clues as to what is most important in life? Some experts on death and dying argue that at the edge of life we see life most clearly, and so the life stories of those facing death can represent a valuable insight into what is truly important and precious.
Content varies greatly from person to person, but there are some common themes. One study on biographical approaches in end-of-life care did a qualitative analysis of such transcripts and coded their ‘core values’ by theme. Here’s what people near the end of life focus on most: family (observed in 92% of transcripts), pleasure (36%), caring (32%), a sense of accomplishment (26%), true friendship (22%), and rich experiences (16%). Notice what’s missing from this list: grudges and disputes, monetary and material wealth, physical appearances, the stress of school and work… all things that can occupy our attention on a day-to-day basis, and much of which becomes trivial in hindsight. Should we in turn take a moment to reflect on our own values, and make more of an effort to integrate them into our lives at an earlier stage?
If you know somebody who is close to death, a grandparent, for example, consider taking your recording equipment for a visit. I neglected to do so with my grandfather, who passed away several years ago, and I thoroughly regret it now. I think he would have relished an opportunity to put his story down, and maybe it would have made his dying easier in some way. I’m sure my family would have cherished such a recording, mostly for the cache of family history we lost when he died, but also as a token of his particular quality of wisdom. Now that my grandfather is gone, I realize that the sound of his voice is something that my own child will never know.
And when you come to face your own mortality, however far away it might feel, consider setting down your story in oral or written form. You might have a lot of stories to tell, and it might be difficult to choose from among them. But certain kinds of stories will be more valuable than others, both for you and the people around you. As a helpful framework for your story, consider the insights of Ira Byock, who describes four messages which help establish closure in any relationship: forgive me, I forgive you, thank you, and I love you. If your story touches on these four messages, you’ll be making a steady approach to the more difficult message, which is also important: Goodbye.