By Jules Odendahl-James
Narrative medicine posits that a healthcare professional’s medical knowledge and practice are enriched by their study of and investment in narrative theory and practice.1 While the specifics of this claim are still being studied, debated, codified, and challenged, it has become a widely accepted truism among narrative medicine proponents that the patient’s experiences, conveyed via stories, anecdotes, or other means of self-portraiture, provide key, credible evidence of a medical condition’s appearance, treatment, recovery, and endurance. Rather than a text to be read, studied, and categorized, the patient in the narrative medicine view is a dynamic force who shapes the form, content, and reception of what becomes a shared story of an injury or illness with a collective protagonist, whether patient, caregiver, or healthcare professional.
Narrative medicine embraces the personal, the subjective. Such a position is not without risk; clinical standards for healthcare and practice are rigorously maintained and regulated for good reason. In search of remedy or relief, we want scientific certainty, not doubt. Narrative medicine, however, argues that the turn to story, to personal experience, does not exist in opposition to scientific rigor, but rather is another domain of attention that provides both patient and physician a fuller picture of what illness or injury is based on its lived conditions. Rita Charon, one of the leading authors, proponents, and instructors of narrative medicine practices, argues that educating physicians about narrative through literary coursework and writing exercises, including those that might comprise the medical record, helps them “follow the patient’s narrative thread, identify the metaphors or images used in the telling, tolerate ambiguity and uncertainty as the story unfold[s], identify the unspoken subtexts, and hear one story in the light of others” (2008, 4). Expanding on this idea, Claire Charlotte McKechnie notes that narrative medicine is wise to consider “narrativity” broadly, with particular attention on elements of non-verbal communication important to theatre/performance practitioners:
non-verbal expression requires language and narrative ordering in the construction of expression and in the process of meaning-making. Each time we make an effort to produce an expression of suffering, we demand a cognitive engagement that requires the ordering [of ] information into narrative. We seek out communication; we desire the transmission of an idea. This is narrativity and it takes a myriad of forms (123).
If diagnosis teaches a physician anything, it is how much individual variance of expression exists within a standard set of symptoms. Diagnosis also illuminates the difficulty of communicating and deciphering the often incomplete and inconsistent experiences of those symptoms. Popular culture, by contrast, teaches very different lessons about scientific reasoning. The “people lie, evidence doesn’t” mottos of shows like House, M.D. and Crime Scene Investigation depict a world in which infallible experts use clinical precision, emotional detachment, and high-tech instruments to expose patients’ and suspects’ deceptions (whether intentional or not). Narrative medicine seeks to bridge this false divide between certainty and ambiguity, thus relieving the physician from God-like omniscience and authority and empowering the patient to assert their personal experiences as central pieces of evidence on par with the givens of a diagnostic chart.
Jacqueline Lawton’s ARDEO is a short play rooted in these principles of narrative medicine. While it demonstrates elements of documentary theatre—dialogue built from interviews and historical and disciplinary research—it is a poetic rendering of the flow of action in which patients, caregivers, and healthcare providers move at the North Carolina Jaycee Burn Center. Actors embody the sights and sounds of the unit, as well as the individual patients, caregivers, and medical personnel. We look into individual faces as they tell of heartbreak, terror, and courage, and then they morph into a backdrop of activity that crackles with the pressure of medical assessment and treatment. Such a pressurized environment then shifts into the patients experiencing the slower, difficult pace of recovery, only to stir and drive forward again with conflict over new complications and new realities post-injury. Theatre, unlike other long-form narrative structures, allows Lawton to give physical presence to the ward’s pace and intensity, utilizing sight, sound, and actors’ bodies in motion. All of these elements are essential for a fuller understanding of the unique nature of care and collaboration at the center.
Burn care necessitates a team-based medical approach; typically, these wounds touch every bodily system from surface to depth. Recovery is lengthy and requires coordination across various medical specialties. Burns also bring healthcare professionals of all kinds into close contact with the dynamic social context of medical conditions. They see firsthand how patients struggle with altered appearances that transform their self-conception, as well as their personal and community relationships. Burn units serve everyone, but have cultivated particular relationships with those professions where the risk of burn injuries are the most concentrated (for example, electricians, firefighters, and industrial-plant workers). These populations form emotional- and financial-support networks for fallen fellows and their families; such networks also support and sustain healthcare professionals, who become like family over the weeks, months, and years of care, recovery, and sustained survival. As such, the Jaycee Burn Center was a collaborative partner already enacting basic elements of narrative medicine in terms of intra-professional communication, patient-centered physical and mental care, and the use of art/writing by patients and caregivers to articulate their experiences. The openness with which all parties greeted Lawton’s and Nicole Damari’s (a UNC–Chapel Hill medical student) questions, illustrates the centrality of story to how the unit’s patients and their support-care members map the hills and valleys of an injury journey.
In a narrative medicine project with theatrical performance as its end goal, theatre artists, patients, and healthcare professionals can share and strengthen one another’s unique diagnostic skills: the physician’s from a depth of knowledge of physiology, anatomy, and institutional structures; the patient’s from personal experiences, family histories, and social positions; and the artist’s from psychology, interpersonal dynamics, and aesthetic sensibilities. It is this collective voice that scripts like ARDEO dramatize in an effort to animate the multiple dimensions of living, suffering, and surviving illness/injury and its care in the United States. While short stories, novels, memoirs, and poetry are perhaps better known narrative medicine forms of study and production, we hope that ARDEO might offer another compelling mode of creation and teaching.2 ARDEO is an archival record of a specific facility’s history and practices, as well as a unique entry into a small but growing list of plays organized like micro-histories, chronicling individual experiences of a common event or location. In its structure and stories are echoes of Moisés Kaufman’s The Laramie Project, Jessica Blank and Erik Jensen’s The Exonerated, and Jonathan Holmes’s Katrina, documentary works that tell the multifaceted and multilayered stories of the aftermath of crime or disaster. As such, ARDEO provides a valuable teaching tool to illustrate the individual and collective dynamics that shape the experiences of injury and its care within a medical institution. More importantly, performers/readers can embody patient, caregiver, and medical professional in quick succession, enacting the key shifts in perspective championed by narrative medicine supporters and practitioners.
We hope that students and practitioners, whether within theatre or medical education, might use the text and its performance for pedagogical purposes of their own design. If there is interest in staging the work for a public beyond the classroom, we ask that the traditional processes of rights and permission be secured.
1 For newcomers to the field, suggested readings include The Principles and Practice of Narrative Medicine by Rita Charon et al.; The Wounded Storyteller: Body, Illness and Ethics by Arthur Frank; Stories Matter: The Role of Narrative in Medical Ethics edited by Rita Charon and Martha Montello; The Illness Narratives: Suffering, Healing, and the Human Condition by Arthur Kleinman; and Illness as Metaphor and AIDS and Its Metaphors by Susan Sontag.
2 Margaret Edson’s 1993 play, W;t notwithstanding, as that script (and its film adaptation) formed the basis of the 2002 Wit Educational Initiative at the UCLA School of Medicine to teach first-year medical students in the United States and Canada about ethics and compassion in their approach to end-of-life care and terminal diagnoses. While Edson has cited the influence of her own background in healthcare on the play (she worked as a physical-therapy aide and a clerk on cancer and AIDS in-patient units of a Washington, D.C. research hospital), W;t, unlike ARDEO, is not based in research interviews or real-life patient narratives.
Charon, Rita. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford UP, 2008. Print.
———, et al. The Principles and Practice of Narrative Medicine. New York: Oxford UP, 2016. Print.
———, and Martha Montello, eds. Stories Matter: The Role of Narrative in Medical Ethics. New York: Routledge, 2002. Print.
Frank, Arthur. The Wounded Storyteller: Body, Illness and Ethics. 2nd ed. Chicago: U of Chicago P, 2013. Print.
Kleinman, Arthur. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books, 1989. Print.
McKechnie, Claire Charlotte. “Anxieties of Communication: The Limits of Narrative in the Medical Humanities.” Medical Humanities 40.2 (2014): 119–24. Print.
Sontag, Susan. Illness as Metaphor and AIDS and Its Metaphors. New York: Picador, 2001. Print.