Can Narrative Medicine Methods Improve Well-Being in Patients with Gastrointestinal Malignancy? A Pilot Study

Introduction

Through the application of “close reading” to clinical practice, clinicians trained in narrative medicine learn to attend to what patients reveal about themselves in more fulsome and connected ways. As Rita Charon, a founder of the field of narrative medicine notes “The close reader absorbs a text, squandering nothing…he or she notes the genre, the diction, the temporal structure, the spaces deleted, and the metaphorical and musical work being done with the words. The close reader registers who is telling the text’s story…The close reader appreciates the text’s meter and rhythm; he or she recognizes when the text alludes to some other text outside of itself. As if in conversation with the author, the reader is aware of his or her own place in the text.” ¹ In narrative medicine workshops, close reading is practiced with artistic texts, visual art, literature, or music. Participants who work in health care gain a better understanding of their patients’ circumstances by applying this heightened awareness to what’s being expressed, and to the importance of gaps in the stories patients bring. Narrative medicine practice has been shown to decrease the burnout that often accompanies the work of caring for ill patients because it reconnects health care trainees and providers to patients’ stories and contexts. This renews their empathy and sense of purpose.^2–4 The writing aspect of narrative medicine sessions contributes to these results since reflective writing itself has been shown to help people make meaning out of their life experiences. ⁵ The use of literature and art is also central to the benefits found in narrative medicine practice since reading and aesthetic engagement also enhance self-reflection and empathy.^6,7

The literature shows that narrative activities are beneficial for patients and health care providers,^8–10 but there has been little study of patients using the tools of narrative medicine practice as created by Rita Charon and colleagues at Columbia University. ¹¹ In one project where medical students participated in narrative medicine workshops with patients living with human immunodeficiency virus, the providers and patients established strong therapeutic alliances. As a result, the patients felt more positively about their health care experiences. Study participants also valued their contribution to a novel way of improving health care delivery, one that considered stigma and marginalization. ¹² Researchers at Columbia recently conducted a pilot study of virtual narrative medicine sessions with palliative care patients and found it was feasible and potentially beneficial to the subjective perception of symptom burden. ¹³

In our study, the principal investigator employed the narrative medicine tools of close reading and reflective writing, one-on-one, with patients. The session themes were identity outside of cancer, meaning-making, and finding joy. The patients acted as students of narrative medicine, honing the skills of close reading and reflective writing to help them process their lives. Patients with gastrointestinal malignancies were the group chosen because of the intense physical and emotional toll these diseases take on the whole of a patient’s life. Several studies have looked specifically at well-being in patients dealing with gastrointestinal malignancies, especially as it relates to challenges with coping and the ability to make meaning of their lives.,^15–16

Methods

The study was designed by a master’s student in narrative medicine at Keck-USC who is also an internal medicine and palliative care physician. The creative texts included a poem, ¹⁷ a graphic story, ¹⁸ and a painting ¹⁹ chosen to address the themes related to well-being. Ten patients were chosen by a single oncologist based on inclusion criteria. Participants had to be receiving infusional therapy for gastrointestinal cancer, be older than 18, able to read and write in English, and have an Eastern Cooperative Oncology Group performance status of three or better. Exclusion criteria included altered mental status or cognitive impairment. IRB approval was obtained from the University of Southern California/Norris Cancer Center.

The PI met with participants when they were scheduled to receive infusional therapy in the cancer center. Each session started with an assessment of the ECOG and completion of the Edmonton Symptom Assessment System questionnaire. In addition to assuring that the patient continued to meet the criteria for performance status, the collection of these data points helped understand their symptom burden at the time of sessions. The first session included an icebreaker as a warm-up activity. Patients were asked to explain the origin of their names. Before each session, ground rules established that the purpose of narrative medicine is to consider what the creative texts evoke for each individual, stressing that participants are not expected to be artistic or literary experts. The texts were viewed or read, and then discussed by PI and patient. The dyad then wrote together for four minutes to a preprescribed writing prompt related to the theme of the session. The PI and patient subsequently read their writing aloud to each other and did a close read of each other’s pieces. A wrap-up included five minutes of general discussion.

After the third session, a survey was administered with Likert items and free-text questions. One month and three months after all sessions were completed, the PI called participants (or, in one case, emailed per patient request) to administer structured interview questions.

Thematic analysis of survey free-text answers and interview responses was done using open coding, developing appropriate categories that were compared with those coded and created by a second member of the research team.

Primary outcome measures were feasibility, which was defined as having seven of ten participants complete two out of the three narrative medicine sessions, and the determination of whether any markers of well-being were elicited as a result of the study.

Results

Of the ten patients accrued, two women described themselves as Asian, one woman described herself as Hispanic or Latino, and two men described themselves as Hispanic or Latino. The other five were White/Caucasian (three men and two women). Four patients had metastatic colorectal cancer, two had gastroesophageal junction malignancies, three had esophageal adenocarcinoma, and one had hepatocellular cancer. Patients’ ages ranged from 50 to 79. Seven patients participated actively in all three narrative medicine sessions. Of the remaining three patients, one was too ill to participate, and the other two had recurrent scheduling conflicts that prohibited engagement with the study.

The average Likert score on all survey items was 4.8 out of 5 (Supplementary Appendix SA1). The main themes that emerged from the analysis of free writing responses (Table 1) were as follows: participants noted spending more time on self-reflection; they described finding more moments of joy, including during the sessions. They noted an elevated sense of empathy for others and an enhanced ability to consider other perspectives. Several participants also noted improved tolerance of chemotherapy as a result of the sessions.

In the one- and three-month interviews, the major themes of enhanced self-reflection, perspective-taking, identification of moments of joy and empathy remained. In addition, many participants noted an increase in positive feelings about their health care experiences, identifying who they are outside of their cancer diagnosis, and feeling a sense of relief from the sessions. Some participants noted a sense of greater connection to other people, enhanced awareness of their spirituality, and new motivation to engage in creative activities (Table 1).

Discussion

In this study, we implemented an intervention that applied the same narrative medicine tools used to enhance the well-being and quality of care of health care providers. Survey and interview results showed similar benefits to patients regarding well-being. The workshops helped patients reflect on their lives, which allowed them to focus on their identities outside of cancer and to identify what brings them meaning and joy. The sessions also enhanced participants’ ability to consider other perspectives, which may have resulted in the finding that the workshops improved their capacity for empathy for others. As a result of the workshops, patients indicated that they were able to step outside of themselves as patients with cancer, allowing for a reprieve from the grind of medical visits, infusions, symptoms, and even worries about the future. Some even felt inspired to reread books they had read previously or to start engaging in creative activities. The sessions taught them to slow down when reading literature and viewing art—the core lesson of close reading.

The narrative medicine sessions occurred while patients had their vitals checked, blood drawn, and anti-cancer agents infused. The workshops also often took place just after patients had received news, good or bad, from their doctors. At times, the patients experienced symptoms related to their cancers during the sessions. This proximity of their life and death struggles to the enactment of narrative medicine may have contributed to an unexpected finding of this pilot: many patients spoke about their goals of care and end-of-life wishes without being asked. Because of this, we see the potential for the integration of a short narrative medicine intervention into the medical encounter—an icebreaker of sorts that could enable seamless conversations about health care goals, especially in palliative care settings.

Replication of this kind of study, or one with a shorter intervention in a clinical setting, would benefit from a team approach. Multiple palliative care team members could be trained in narrative medicine methods. Facilitators of this work need not be physicians. This would allow for the enactment of a larger study employing a control group to better assess outcomes including quality of life, symptom burden, and overall survival and toxicity. Group narrative medicine sessions in this patient population could also help mitigate difficulties with coping and feelings of loneliness that emerge in the course of serious disease. The ability to scale the application of narrative medicine to patient care is limited by the time and training required to do so. Our difficulty accommodating the oft-changing schedules of this patient population was evident. This study represents a starting point and suggests the value of the practice for patients experiencing extraordinary challenges.