It is humbling to remember we are merely characters in our patients' stories. We are neither the author nor the narrator, and certainly not the lead.
The theatre was packed as usual. Every year we gathered to watch volunteer actors from film, television, and Broadway perform the works of patient-writers—honoring their words, adding individual nuances, coloring the narratives in new ways. There were not only tales of illness, but also tales of family, childhood memories, favorite foods, celebrity sightings, and ride-sharing apps. My mentee and I sat side by side in the shared experience of witnessing these acts of creation. In that darkened auditorium I felt a transcendent connection to everyone around me: to the stories, the tellers, the listeners—to our common humanity.
Five years ago I began volunteering at a writing program called Visible Ink. Founded by author Judith Kelman, the program pairs patients of all ages at Memorial Sloan Kettering Cancer Center with experienced mentors who work with them to develop writing projects of their choice. At a panoply of coffee shops and boulangeries I have helped people craft poems, memoirs, fiction, and even college application essays. Collaborating with a diverse and inspiring group of people has taught me myriad lessons that mold my approach to patients I work with as a clinician. In celebration of five years at Visible Ink, I would like to share five of these lessons, which are applicable to our daily work as clinicians.
1.) Pick a good question or prompt.
While some writers enter the program with a specific project in mind, many are looking for a spark of inspiration. Over the years I have assembled a trove of writing prompts to explore what stirs them and what matters. These prompts have made me think more intentionally about the questions I ask in clinic or the hospital.
A question like, “How are you feeling?” is too rote to elicit a full or considered response. Instead I try to phrase things in ways that invite patients into a different register which spurs them to think more creatively. I can often unearth an important insight just by asking a carefully worded question. It could be as simple as: “What do you wish I would ask?”
I am continually reminded that one size does not fit all; a particular prompt or question can stimulate one person and ring hollow for another. Indeed, a question that does the latter can cause patients to close themselves off and become guarded. I have to get creative in the moment and recognize that I might not resonate on the first try—and then try again.
2.) Open with strengths.
When giving feedback, I always begin with the positives instead of launching headfirst into weaknesses or what needs work. I frame my thoughts with what is being done well, then capitalize on these positives to address what can improve.
I try to apply this approach to patient visits as well, highlighting positive behaviors before bringing up those which might need to change. I also invite patients to express what they feel is going well to ensure we are on the same page—and it is a page we keep bookmarked. I often think of an example that Dr. Michael Barnett (@ml_barnett) shared on Twitter: “I had a patient tell me he started smoking again because he felt no one in our practice seemed to care that he quit.” This cautionary tale has stayed with me in my work both at Visible Ink and in clinic—an important reminder to start with, return to, and continually build on strengths.
3.) Practice story-centered care.
Concentrating on stories, instead of the people writing them, helps to draw out insights without forcing mentees into the direct glare of their identities; instead they can look from a safer distance. To further facilitate a feeling of safety and comfort, I am cautious to avoid judgment in my feedback. I simply comment on what I notice: this word comes up multiple times; this narrator uses passive voice. My commentary can open up a conversation that provokes deep reflection without making the patient feel subjectively cornered.
Similarly, in clinic I focus on patients’ goals and behaviors instead of static personal traits. “You are so resilient,” can feel pressured and stifling; instead, I might say, “This action shows resilience.” I try not to box in my patients, even when praising them. I believe this approach gives them the support and breathing room to strive but also to falter.
4.) Recognize the power of words.
The interface between writer and reader, between teller and listener, is a fluid space of tremendous potential change. I can reinforce certain perspectives and call others into question, and I must not take this responsibility lightly. Language gives architecture to our experience of reality; language thus has the power to restructure our reality. Sometimes my interpretations can usher in a new paradigm, which speaks to the sweeping consequences of my words and the carefulness with which I must use them.
In clinic I try to listen to the words patients use to articulate their experiences and respond in a way that makes them feel heard on their terms. When patients express unhealthy feelings or behaviors, I try to challenge those practices by gently probing their language and, with permission, offering alternative ways of seeing. Ultimately, only they can make a frameshift happen, but I can endeavor to remind them of other words, of different possibilities.
5.) Remember it’s their story.
Every person has a story, and I aspire to help patients tell theirs in a way that feels true to them yet also encourages them to grow. My aim is to accept these narratives as they are, all the while offering my partnership and support in developing them. I emphasize what matters to them, and we work together to reframe and rewrite stories in ways that clarify, nurture, and honor their values. Sometimes I get it wrong, misinterpret, miss the point. And that’s ok: my intuition is not perfect, and I will inevitably make mistakes. But I have a duty to acknowledge those mistakes and learn from them in pursuit of helping patients speak their truth.
It is humbling to remember that I may be a reader of, and even a character in, a patient’s story, but I am neither the author nor the narrator. And I am certainly not the lead. That role applies to my story alone—a story on which Visible Ink has left an indelible imprint.