Making Space for The Person

One question I keep returning to as Prose for Patients grows is whether storytelling loses something when we bring it into medicine.

We now have terms for this work: narrative medicine, medical humanities, patient-centered storytelling. We study it, teach it, publish research about it, and increasingly build programs around it. All of that can be valuable. But sometimes I wonder whether, in trying to make storytelling clinically useful, we risk medicalizing something that was human long before it was medical.

Recently, I had the opportunity to speak with one of the leaders behind Tell Me More, a humanistic storytelling initiative at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell. I entered our conversation wanting to understand how a storytelling program could grow inside a healthcare system. I left thinking much more about what it means to make space for a person inside one.

Tell Me More began from a simple observation: healthcare professionals can know an extraordinary amount about a patient without necessarily knowing very much about the person.

A chart might tell us the diagnosis, medications, laboratory values, procedures, and plan. It may tell us whether someone is improving or deteriorating. But it may never tell us what that person loves, what they are trying to return home to, what makes them laugh, or what has happened to them before they entered the hospital.

Tell Me More tries to make some of that visible.

Students and volunteers sit with patients and learn about the person beyond the diagnosis. They then create concise visual posters that can remain in the patient's room—not another exhaustive medical document, but an invitation to conversation. A few words. An image. Something that might make the next person entering the room stop and ask a different question.

What fascinated me was not only the storytelling itself. It was how intentionally the program had been built into the hospital.

Tell Me More eventually found a home within Patient Experience. From there, connections could extend to people such as nurse managers who actually know the rhythms of a hospital floor: who has been there for weeks, who rarely receives visitors, who might welcome company, and even who has acquired the label of a "difficult patient."

That last group stayed with me.

When someone is called difficult, the instinct of storytelling is to ask another question:
What happened to this person that I do not know yet?
Not every behavior has a hidden explanation that excuses it. Storytelling is not a substitute for boundaries, medicine, psychiatry, social work, or good clinical judgment.
But a label can become remarkably powerful once it enters a chart or a conversation. "Difficult" can begin to precede the person into every room. A story can sometimes interrupt that.

Our conversation also made me think differently about independence. Some patients cannot communicate easily. Some are children. Some are critically ill. Some speak another language. Some may never be able to participate in a traditional interview at all. Tell Me More has adapted by involving interpreters and, in settings such as intensive care and pediatrics, by learning about patients through the people who know them.

That resonates deeply with what we have encountered through Prose for Patients. Sometimes the person sitting across from us is a patient. Sometimes it is a mother describing her child. Sometimes it is a sibling, caregiver, clinician, donor family member, or advocate.

The voice changes.
The obligation to listen does not.
Perhaps the most interesting difference between our programs is the artifact that remains afterward. Tell Me More often distills a conversation into something intentionally brief—a visual doorway into the person. Prose for Patients usually moves in the opposite direction. We sit for longer conversations and create fuller first-person narratives and poems that participants can review, revise, keep private, share with family or clinicians, or publish if they choose.

One creates an opening.
The other tries to preserve what comes through it.
I increasingly think healthcare needs both.
There is also a danger here.

As storytelling becomes more accepted within medicine, we should be careful not to turn curiosity into another checkbox.
Ask about hobbies.
Document family.
Identify goals.
Complete narrative intervention.
That would miss the point.

The value of asking someone what their life looks like is not simply that the answer might improve adherence, reveal a social determinant of health, or uncover something clinically actionable. Sometimes those things happen. Stories can reveal fears, relationships, priorities, barriers, and goals that profoundly affect medical care.

But a person's story does not have to become clinically useful to deserve our attention.

Sometimes knowing that your patient loves gardening matters simply because your patient loves gardening.
Maybe that is one of the distinctions narrative medicine has to protect as it grows.
The conversation also gave me a much clearer idea of what the next stage of Prose for Patients should look like.

We have spent considerable time teaching volunteers how to interview, listen, write, revise, and preserve another person's voice. But sustainable storytelling requires more than trained storytellers. It requires pathways to the people whose stories might otherwise remain unheard.

Hospitals already have people who understand those pathways.
Patient Experience teams. Nurses. Social workers. Chaplains. Child-life specialists. Palliative-care teams. Patient and family councils. People who know not merely which diagnosis occupies Room 412, but who has been there for three weeks, whose family lives far away, who keeps asking for someone to talk to, or whose frustration may contain a story no one has had time to hear.

The next stage of Prose for Patients is therefore not simply about becoming bigger.

It is about becoming embedded.

I want us to build relationships in which a nurse, social worker, patient advocate, or community organization can encounter someone and think: There is a person here who might want to tell their story.

And then know exactly where to send them.
At the same time, I want us to preserve what made this work meaningful in the first place. No one owes us a story. A patient does not become more valuable because their experience produces a beautiful poem. A painful life does not exist to educate a medical student. And listening should never become extraction. The participant must remain at the center: what they tell us, what they leave out, what we write, what they change, and whether anyone else ever reads it.
Medicine will continue becoming more technologically sophisticated. Our ability to record, measure, transcribe, summarize, and predict will become extraordinary.
That makes me think the human question becomes more important, not less.

Not simply:
What information can we capture about this patient?
But:
Have we made enough room to know this person?

That is a different question.
And perhaps the future of narrative medicine depends on remembering the difference.