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Thursday Review: “Patients as Story-Tellers of Healthcare Journeys”

Klay Lamprell and Jeffrey Braithwaite use one of my favorite words when talking about stories: “structure”. Writing in Medical Humanities, the authors discuss two complimentary ways to help patients express their own story. The first is a structural approach, and the second is more character-driven.

The purpose of the article is to bring these techniques to light. The authors do briefly discuss what makes these stories powerful, though. Stories can be longitudinal: they reach experiences across silos of care over periods of time.

Programmes designed to account for and assess medical episodes in individual institutions, and surveys intended to collect statistical data on patient satisfaction even across spectrums of settings, do not comprehend the deeply personal, narrative nature of the journeys that patients take as they move through healthcare providers.1 This is the value of patients’ stories.

When I teach storytelling technique, I teach a three-part structure similar to the authors’. Briefly, the three parts I teach are

  1. Problem
  2. Obstacles
  3. Solution

A story has to have some problem. If there’s no problem, there’s no story. If the problem is too easy to solve, that’s not a story, either. That’s an errand. The problem establishes what the story will be about, and frames why we as listeners should care. Most of a story’s time is spent in the obstacles. What smaller problems creep up as the main character tries to solve the overarching problem? The solution to the problem might not be a happy ending, but it’s something the main character can live with, and it produces a real sense of satisfaction: the problem has been dealt with somehow, and the story is over.

The authors base their approach on Joseph Campbell’s reading of mythology,2 usually called “the hero’s journey”. Lamprell and Braithwaite refer to this as the “quest narrative”:

  1. Interruption of Ordinary World and crossing the threshold into the Special World
  2. The Road of Trials and Obstacles: The central character is tested with new challenges and begins to sort out the rules of the Special World.
  3. The character realises that the critical period of the journey is over and the Special World must be left behind. The journey must be made to the New Normal…

In every story, something “interrupts” everyday life, there are obstacles to solve, and the story ends with some kind of “New Normal”. In that sense, this model is universal.

On the other hand, a quest narrative or a hero’s journey is a specific kind of story. The hero leaves home, goes on a quest, and returns. Odysseus and (as the authors mention) Frodo Baggins are the heroes of literal quest narratives: they return home at the end of the story.

In the context of healthcare, I try to emphasize that the problem that starts a story can be almost anything. The precise way a patient or provider frames the problem contains a lot of information about what they consider to be important. When it comes to getting patients talking and thinking about their own journey through the healthcare system, Lamprell and Braithwaite are on to something. A quest narrative is a tried-and-true, intuitive model to get people talking. The authors sketch out how a quest narrative works in the context of a patient journey:

  1. …experiencing injury or illness, or noticing a symptom, … the story describes entry into patienthood, and the new setting for the story becomes the healthcare system.
  2. The patient describes the events and interactions of treatment
  3. The patient’s story comes to a close as the medical trajectory … is completed. The patient contemplates a new conception of normal, incorporating changes in lifestyle, ongoing health issues or perhaps even life ending.

The “ordinary world” or “home” is life before the illness. Something happens that pushes the patient to seek medical expertise. This is the “Special World” of this quest. The “Road of Trials” is navigating the haunted forest of the healthcare system itself. At the end of a story, a “New Normal” is achieved. Ideally, this is the patient literally returning home, treated or cured, although this isn’t always the case.

Lamprell and Braithwaite also discuss a cast of seven archetypal secondary characters based on the psychology work of Carl Gustav Jung. These archetypes are characters who play a distinct role, like the Herald, the Gatekeeper, the Trickster, and the Mentor.

When asking a patient to tell their story, these characters can be good ways to ask for more information and help the patient round out their story. For example, “Who in your story would you say played the villain?” (the “Shadow”) or “Who in your story gave you some really good advice?” (the “Mentor”).

Sometimes, becoming a patient is less than heroic. At least, as a patient, our experiences can seem less than mythic and Lamprell and Braithwaite address this. They confirm that even if the hero’s journey is a good way to get patients to tell their medical story, patients don’t have to characterise themselves as high achieving and consistently do-gooding.

While some patients do perceive meaning in the trials and obstacles of their healthcare experiences,3 others may not.

The twist, however, is that regardless of whether the patient-as-protagonist is a heroic figure, the patient-as-story-teller achieves a special feat by being the voice of the experience and the voice of the expert.4 Patients as story-tellers bring the boon of experiential knowledge to their audience community of clinicians, policymakers and other patients.5 In this sense, they are heroes, but cannot be imposed upon to characterise themselves in this way.

Sources

The article reviewed: Lamprell, Klay, and Jeffrey Braithwaite. “Patients as Story-Tellers of Healthcare Journeys.” Medical Humanities 42, no. 3 (September 2016): 207–9. https://doi.org/10.1136/medhum-2016-010885.

1 Schembri, Sharon. “Experiencing Health Care Service Quality: Through Patient’s Eyes.” Australian Health Review 39, no. 1 (February 24, 2015): 109–16. https://doi.org/10.1071/AH14079.

2 Campbell, Joseph. The Hero with a Thousand Faces. Novato, CA: New World Library, 1949.

3 Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1995.

4 Gabriel, Yiannis. “The Voice of Experience and the Voice of the Expert: Can They Speak to Each Other?” In Narrative Research in Health and Illness, edited by Brian Hurwitz, Trisha Greenhalgh, and Vieda Skultans, 168–86. Oxford, UK: Blackwell, 2004.

5 Charon, Rita. “What to Do with Stories: The Sciences of Narrative Medicine.” Canadian Family Physician 53, no. 8 (2007): 1265–67. https://doi.org/10.1111/jocs.12146.

Featured Image: Hospital Bubble, by Flickr user Pat David, used under a CC BY-SA 2.0 license