What Narrative Medicine Means to Me

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May 26, 2016

Blue911

What Narrative Medicine Means to Me

By Elizabeth Lahti, MD

My pager goes off. I don’t look at it, but place my hand over the button to make sure it doesn’t go off again. I’m in my patient’s room. She is well kept with white hair pulled off her face. Her eyes rest shut. She lays still, her skin starting to cool. Her chest has ceased to rise and fall, and no pulse hammers against my fingers when I place them gently on the inside of her wrist. I sit with her family. In silence we honor her life. Her daughter and husband thank me for taking care of her. Her death is not unexpected. Decisions to stop treatment are in the past. Airplanes from the east coast have arrived in time. Stories have been told and re-told.

I finally release the husband’s hand and stand to go towards the door. I glance at the text message on my pager. Mr. G died. Family at bedside. The hospital corridors are quiet. It is Thanksgiving today. I take the elevator down to the 5th floor and walk past the resident work room and the nurse’s station to a closed door at the end of the ward. I knock with light knuckles and open the door without waiting for a reply. I know what waits behind the door.

In what seems like an impossibility my pager goes off for a third time. It calls me to another patient room. Another family at the bedside of a loved one who is gone.

On this particular Thanksgiving I had a surreal experience. Three of my patients died. Each death was what I would describe as a good death. They were not unexpected. No alarm bells or violent resuscitation scenes. No intractable pain or gasping for air. Each patient was accompanied by people who loved them—but I trembled with the gravity of the day.

I started writing about my patients when I couldn’t leave the experiences at the hospital. I brought the patients’ stories home with me. I expanded on the stories with fiction because the real ones were often incomplete, unsatisfying, unbelievable, perplexing or devastating. I wrote myself into the stories in ways I could not have done at the bedside. I imagined my patients as friends or family members; I grieved their losses and experienced their illnesses in my own words. I wrote to understand the incomprehensible.

David Whyte, the poet and philosopher, says he turned from his career as a marine biologist to a poet because “scientific language wasn’t precise enough to describe the experience I had.” I too began to write prose and poetry because medical language wasn’t precise enough to describe the experiences I had. For me writing about my patients resulted in a newfound ability to listen, experience and respond to their stories in a different way—because suddenly I had another layer of language with which to translate illness. It was a language I learned neither in medical school nor residency, but years before when I studied literature and language.

People ask me all the time, what is narrative medicine? Rita Charon describes narrative medicine as “medicine practiced with narrative competence: the ability to listen, absorb and be moved to action by the stories of illness.” It is that, but it is so much more. I first discovered the term narrative medicine by sheer coincidence. My sister, living and working as a social worker in New York, stumbled upon a one day seminar and called me that night.

“You have to come to New York,” she said.

In 2012, I went to my first Narrative Medicine workshop at Columbia University. When I met Rita Charon and others, I felt as though I’d found my tribe. Suddenly, what I was doing and experiencing had a name, a history, and a momentum forward. This was extraordinary for me and changed the course of my career. Since then, I have entered into a world where narrative and medicine connect—which is everywhere. What I have come to learn is that to understand the stories of illness one must also understand the stories of wellness—of the patient, the student, the nurse, the case manager, the specialist, the resident, the caregiver and the scientist. One must be intimately self-aware, but also open to the vast possibility and perspective of others.

Recently, I visited the 911 National Memorial in New York. One wall is covered with small canvases of different shades of blue. Hundreds of artists were asked to paint, from memory, the color of the sky that beautiful September morning before the towers fell. The result is that no panel is the same. Such a simple task, and yet impossible to replicate what another individual saw, absorbed and experienced.

Although each canvas is different, no canvas is untrue, and they coalesce to represent the fuller story of that sky. I believe narrative medicine does the same. If we listen closely, recognize the ways each individual colors their story, and honor the authenticity of each of those stories, then we will engage in collaborative care made up not only of patients and doctors and nurses and caregivers, but of humans who experience illness and wellness together.

The NWNM Conference is an opportunity for those of us in the Pacific Northwest to build our own narrative medicine network. One that includes health professionals, patients, scientists, caregivers, artists and others. We will have the chance to explore our own stories at the intersection of what Susan Sontag called the Kingdom of the Well and the Kingdom of the Sick. Beyond recognizing our own stories, we will build skills in listening, understanding and responding to the stories of others. I look forward to meeting you.

By Elizabeth Lahti, MD

You can follow Elizabeth on Twitter @narrativemd

4 Comments

  1. Liz Earnhart on May 28, 2016 at 4:00 am

    Hi Elizabeth,
    This is Liz from the St Vincent ED and the long ago Peru adventure. I LOVE this. This is so amazing and I am wondering why I have never heard of this before. Are you looking for nurses to be involved in this endeavor? Because I have so often come home and sat with my experiences and cried because I did not know how to find a space in my work environment for the telling of the true story and the true experience I was having. It was all so clinical and scientific seeming. And I struggle to find the place where we all get to be just a bunch of humans having an experience together…..an experience that is perhaps more powerful and magical than anything else that exists, but we don’t speak of it as such. Which robs us of…..something.
    Thank you for writing this. I want to hear more. I want to find a way to be involved in this.

    Liz

  2. nwnmedicine on June 22, 2016 at 11:23 pm

    Liz,
    Thanks for your message! Elizabeth is away right now, but we’d love to have your participation in the conference. Send an email to nwnmc.pdx@gmail.com and someone on the planning committee will be in touch! We look forward to having you involved!

  3. Rita Charon on September 10, 2016 at 1:19 am

    Greetings from the Program in Narrative Medicine at Columbia University in New York! I so wish I could be with you all in Portland September 16-18 for the NWNM inaugural conference. I am assuming that there will be many more! Looking at the program, I see many of you–Louise Aronson, Elizabeth Lahti, Ellen Michaelson, among them–who’ve been with us at Narrative Medicine Workshops in New York from the very beginning of our work. We started Narrative Medicine at Columbia University in 2000, replacing what we had been calling Humanities and Medicine or Literature and Medicine because, as Elizabeth wrote, it is so much more than simply reading or telling stories of illness and care. It is a philosophy and a practice of care that extends from the deepest interior of the clinician or the patient toward the work we do together. Through our practice, we come to realize what it means to be alive, to be with others, to suffer and to relieve suffering, to be human and mortal–all of it, within these clearings we can open for ourselves and one another. Elizabeth’s blog, to which I’m responding, represents so eloquently exactly these realizations, as she moves from deathbed to deathbed of a Thanksgiving evening in the hospital, not facing a wall between the living and the dying but rather reaching out her hand gently to touch the veil of delicate silk that separates these two states. This sense of peace and change and endurance is called forth in the image on the conference’s website, the image of the clearing. It is one we, too, have been attracted to, for narrative medicine creates safety, protection, but yet a presence in the real, ordinary world of trees and moss and sky.

    The combination of scholarly presentations, clinical observations, individual illness narratives, and artistic performances that I see on the conference agenda rings all the bells, as it were, of the transformations that take place in narrative medicine. My colleagues and I just had a first conference call with five other organizations in New York committed to healing through narrative work to discuss collaborative work we can do together toward racial justice in America. These are the narrative circles that we create–exceeding even health care issues toward seeking means to face conflict, overcome polarizations, and support justice. We see the same forces at work on the part of authors published in our on-line journal Intima and among our graduate students and alums from the Master of Science in Narrative Medicine graduate program at Columbia. Drawn from so many health professions–nursing, social work, veterinary medicine, psychoanalysis, physical therapy, integrative practices–as well as from creative backgrounds, these students and graduates and colleagues are transforming health care teams and bringing creativity into the heart of health care. Likewise, the narrative medicine work underway with our partners in Paris, in Tokyo, in Lisbon, in Jerusalem, among other sites, confirms our highest hopes that narrative clearings empower persons with a stake in effective and just health care. Remember what Roland Barthes said–“[N]arrative is international, transhistorical, transcultural; it is simply there, like life itself.” Through narrative, we cross boundaries between our sometimes warring health professions, cultural and language boundaries, and boundaries around the very concepts we hold about illness and health to together name the power of the care of the sick, to find relief from the isolation of illness or illness care, to discover the joy (remember, Richard Selzer called it a “black joy”) of helping others by witnessing suffering and illness.

    We extend our hearts and minds to the thither coast, happy to have partners and friends joining in creating this field, extending its reach, originating new dimensions of its work. Although I cannot show you what it will look like yet, I want to announce that Oxford University Press is about to release the Columbia group’s new book, The Principles and Practice of Narrative Medicine. It has been a work of love, writing chapters together that not only lay out the philosophical and literary concepts that form the foundation of narrative medicine but also describe the unique teaching and clinical practice made possible through this work. Publication date is November 4, 2016 (four days before the–shudder–election). It was our contribution to the national and international conversation that you, now, in Portland are amplifying and deepening.

    Thank you all for this tremendous celebration of an idea and launch of a new network of colleagues. What I’ve learned from the patients in my primary care practice is my North Star, guiding my own work toward being present, recognizing the other, humbly seeking for what might help. I agree that this work brings blessings all around–so that caregivers are graced with dignity, the care is tender and humble, and the sick are not alone. With deep regard, Rita Charon

  4. […] had been calling Humanities and Medicine or Literature and Medicine because, as Elizabeth wrote in What Narrative Medicine Means to Me, it is so much more than simply reading or telling stories of illness and care. It is a philosophy […]

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