Takeaway
When I was working in an epilepsy center, I learned the value of understanding the patient’s lived experience. Art and storytelling can provide a unique window into patient concerns and dreams.
Lifelong Learning in Clinical Excellence | November 6, 2024 | 2 min read
By Sujal Manohar, medical student, Baylor College of Medicine
During a session in the epilepsy monitoring unit (EMU)’s art and storytelling program, I met a 21-year-old patient whose life had been turned upside down by a recent epilepsy diagnosis. Unable to drive due to uncontrolled seizures, he sketched a car with a bold red “X” over it, symbolizing his loss of independence. It was the first time he’d ever shared these frustrations—feelings he considered too personal for a medical encounter and too embarrassing to discuss with friends. But it’s these details that can transform the way we approach patient care.
As an artist and future neurologist, I initiated this art and storytelling activity for EMU patients to better understand their experiences beyond the clinical environment. Through informal interviews, patients discussed how epilepsy affected their families, employment opportunities, and/or social life. Patients could also draw or write something that represented their experience using provided art materials.
Listening to their stories and looking at their artwork showed me that even if a diagnosis is common in a certain clinical setting, it can be life-altering to a patient. By recognizing the social and emotional impact of an illness, we’re better positioned to give the kind of care every patient deserves.
Here’s what I learned from this experience:
1. Expand the social history.
Including open-ended questions about a patient’s family and hobbies may seem simple, but often reveal valuable clues that help with diagnosis and foster rapport. In some cases, starting the encounter with the social history rather than the history of present illness can be helpful.
2. Overcome barriers to sharing.
Patients may hesitate to share how their condition affects their lifestyle. They may worry about judgment, stigma, or think their feelings aren’t relevant to their care. Limited appointment time can also make it hard to take time for this. However, these conversations can transform a patient’s comfort and trust with their healthcare professional. Encourage storytelling by giving patients space to share their experiences.
3. Connect patients with community resources.
When patients share that they’re struggling or feeling isolated, patient advocacy groups, social media communities, and local arts programs can provide support and connection. Arts on prescription, for example, is a growing field that encourages healthcare professionals to connect patients with local arts and cultural experiences to aid well-being. Familiarize yourself with local and online resources to support patients emotionally and socially.
4. Appreciate the power of narrative medicine.
Narrative medicine and the humanities give patients a voice to express their stories. Creative approaches like art and storytelling can help patients process difficult experiences and give us a better understanding of their experience. These connections aren’t just valuable for patients—they benefit providers and trainees and help us provide compassionate care. Consider integrating narrative medicine and the humanities into your practice, whether in the form of reflection, storytelling, writing or artistic practice.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.