Communication Currents

Storytelling in Cancer Contexts

October 1, 2010
Health Communication

Cancer is an invited life guest, feared by many and understood by few. Danger hovers as individuals find themselves in the grip of cancer, cast out of ordinary roles and into settings characterized byMagnetic Resonance Imaging (MRI). New interventions focus on an individual’s “terrain” in controlling the development of cancer or bolstering its treatment. The goal of such efforts is to prevent the growth of tumors by strengthening patients’ natural defenses. For example, rather than poisoning cancer cells, new drugs approved by the Federal Drug Administration (FDA) block the cells enabling some cancers to grow. Reinforcing a patient’s “terrain” to cope with cancer moves beyond science to include storytelling.

In contexts of Western medicine, composed of ever-enlarging menus of medical technologies, storytelling may seem like a remnant of a bygone era. Even so, while co-producing a documentary on pediatric cancer care entitled The Art of the Possible, I observed how providers rely on both storytelling and science to promote quality of life in the face of life-threatening illnesses. Dr. Pete Anderson, a protagonist in the documentary, is a pediatric oncologist at M.D. Anderson Cancer Center. He represents a growing number of health care providers who recognize how storytelling can disrupt biomedicine’s tendency to isolate disease from the broader scenes of patients’ lives. By moving between science and stories, care providers can be more responsive to patients’ uncertainties, fears, and life circumstances while efficiently organizing care.

Clinical practice involves the telling, receiving, and creating of stories. In diagnostic processes, providers follow warning signs, sense problems, and suggest corrective action.  Patients narrate their conditions to providers who reshape those story elements into a medical form by including information gathered through questions, physical exams, and test results. Diagnostic stories typically contain only the barest bones of the patient’s original narration; subjective aspects of patients’ accounts are separated from general biomedical facts.  Unfortunately, when disease is isolated from the human conditions in which it arises, its social significance is minimized. The power of storytelling is more fully realized when providers also use narrative techniques to understand what illness means to patients.

How can providers use storytelling to build therapeutic partnerships with patients? How can storytelling enhance patients’ quality of life? Importantly, providers and patients alike should remember that individuals rely on storytelling when making sense of expectations gone awry. A cancer diagnosis threatens a person’s previously imagined future. Interruption and delay of life tasks is typical for individuals diagnosed with cancer. When facing illness, patients must remap their existence. Through storytelling, speakers connect events into a sequence to communicate meaning. How events are organized is consequential for later actions. For example, if care providers understand that a teenage boy with osteosarcoma can no longer play soccer due to the side-effects of a limb salvage surgery, they can help him develop “new normal” routines including low-impact sports (e.g., kayaking, canoeing).   

In The Art of the Possible, providers use narrative-based clinical strategies to (1) help patients understand their disease, and (2) personalize treatment based on their needs and life goals. Dr. Anderson and his staff create “shared calendars” and one-page summaries of care with patients and family members, and involve them in dictation processes. Shared calendars are visual aids that include prompts for the timing of chemo doses and blood count checks as well as events of importance to patients like band practice, cheerleading camp, and trips to college campuses.  One-page summaries couple diagnostic information and test results with stories and photos shared by patients. Patients and families also have the option of participating in the dictation process at the end of a medical visit. In the documentary, Dr. Pete emphasized:

My dictations will be better if patients are in the room. And it can be a fun process. I usually start with a story shared by the patient, something good in their life. If patients are in the room, I also can pause, ask questions, clarify treatment . . . and ensure we are all on the same page.

Depersonalized case histories remain a staple of mainstream medicine. In contrast, dictations can invite patients and families to share their priorities and concerns.

Emergent technologies are increasing opportunities for telling and recording stories. Several characters in The Art of the Possible participate in online support communities sponsored by the Association of Cancer Online Resources (ACOR). ACOR coordinates over 150 online mailing lists for families coping with various forms of cancer. Members share stories about their experiences even as they bear witness to other members’ reflections. Other characters inThe Art of the Possible rely on websites like CaringBridge to post stories about their experiences, provide updates to friends and family, and seek material and social support.

Emergent technologies also include affordable means for patients to store and access information about their care. In The Art of the Possible, patients and family members are provided with flash drives that contain their medical records, one-page summaries, shared calendars, and test results.  By sharing information on flashdrives, providers (1) encourage patients and families to be active participants in their care, and (2) maintain open and transparent communication with patients and families.

Conventional treatments including surgery, radiation, and chemotherapy remain indispensable when patients are faced with cancer. However, communication practices that acknowledge and support the broader “terrain” of patients’ lives ought to accompany traditional interventions. Storytelling is by no means a panacea for the dramas that accompany a cancer diagnosis. However, it can disrupt the silence that too often surrounds suffering, and foster therapeutic partnerships between providers and patients.

About the author (s)

Lynn M. Harter

Ohio University

Steven and Barbara Schoonover Professor