In a New Yorker article “Why Storytelling Is Part Of Being A Good Doctor” (July 25, 2022) Dr. Jerome Groopman confides, “For two decades, I had seen my patients and their loved ones face some of life’s most uncertain moments, and I now felt driven to bear witness to their stories.” He tells us how he felt inspired to write about his experiences as a doctor as had others before him.
Groopman notes, “I started to appreciate how they used their individual perspectives and styles to illuminate the experiences of those struggling with illness. They made their own reactions part of the story and, in doing so, immersed the reader in a fundamental struggle of the profession; balancing the ego required to take responsibility for another person’s life with the humility to acknowledge our capacity for catastrophic error.”
There have also been many compelling stories written by patients that recount their experiences, including impressions of the medical professionals who cared for them. The list here is long but I’ve often referenced Intoxicated By My Illness by Anatole Broyard who shares his personal experience as a cancer patient and advises doctors to reveal their humanity in caring for the sick. Broyard believes that doctors showing compassion would not only benefit patients but also those in the healing professions.
These stories offer insights into understanding the challenges that patients and doctors encounter in navigating the lived world of illness. When I was working as a medical humanist at a cancer center I found myself in a position to observe the challenges that each faced. As a writer myself, I was struck by the language differences that often existed between those providing care and those receiving care.
Literary stories can be moving and instructive but I recognized a need for a practical solution for sharing a patient’s perspective in real time. My aim in creating the role of medical humanist was to facilitate communication, which could help to address questions and concerns for making informed decisions about care.
The role of storytelling in the delivery of medical care is addressed in “Narrative-Based Medicine: Potentials, Pitfalls and Practice” (Kalitzkus & Matthiessen, Permanente Journal, 2009). The authors conclude, “A narrative approach in medicine will only succeed if ultimately it has a positive effect on daily practice instead of just adding to already existing pressure. Thus, it is helpful to point out that complex illness narratives as published in biographies or collected by social scientists are useful for training and research purposes but the complexity of these published narratives is neither applicable nor necessary in medical practice.”
In supporting their view about complex narratives not being ‘applicable or necessary in medical practice’ the authors’ reference the function of my role stating, “Because the language and life world of patients and physicians can be so far apart, it might be helpful to have an intermediary. Celia Engel Bandman encapsulates this position in her concept of a facilitator between the physician’s and the patient’s world that she calls a medical humanist. The term is derived from the philosophical tradition and worldview of humanism and is not to be confused with the field of the medical humanities. Bandman’s role as a medical humanist in a cancer center in Vermont is creating a bridge between physician and patient.”
The authors go on to note, “Ms. Bandman, a writer who understands the impact of words and how language shapes experience does this, for example, by helping patients to find words for the experience and to include them in the medical record. The medical humanist’s note documents the patients’ story in their own words and was filed alongside the clinical record, which made for the whole story.” (Celia Engel Bandman, personal communication, 2003 Mar 23).
Quite frankly, it was flattering to have my work referenced in this journal article. It’s also true that I have been touched and inspired by personal stories written by doctors and patients. They have enriched my appreciation for what’s it’s like on the front lines of medical care. Yet, I have found that a more practical approach in real time can help build a communication bridge between patients and healthcare providers, prompting open and honest conversations in planning of care.
What began as a medical humanist helping to facilitate communication at a cancer center in Vermont led to the development of SpeakSooner: A Patient’s Guide to Difficult Conversations, a tool that’s widely available to both patients and healthcare providers to better understand needs, concerns and preferences for care. Together, they can write their own stories of illness.