Narrative Medicine

Media & Medicine

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I’m an introvert. I recently took an online Myers-Briggs test a work colleague sent me, and I scored a solid INTJ. This categorization has been stable for me since high school. Though I do enjoy social events and meeting new people, as a true introvert, I find conferences exhausting. Medical or otherwise, the constant introductions, social navigating, and personal storytelling involved can prove daunting.

Last April, I was in Boston at a medical conference and had lunch with a group of women physicians. I struck up a conversation with the woman sitting next to me, trading the standard questions: where we’re from, our medical specialty, our interests. I told her about my passion for writing and narrative medicine and storytelling and physician wellness and bioethics and the humanities and, in turn, heard all about her upcoming book and the wonderful work she was doing in Boston.

A month later she emailed me, saying she had just attended a narrative writing event at her hospital, run by Dr. Suzanne Koven, and that what Dr. Koven was doing seemed very much aligned with my interests and the work I hoped to do in Seattle. Would I like a virtual introduction?

And that, as they say, is history. At least for my work and life. I spent over an hour speaking with Suzanne, learning about her path in both medicine and writing, and how she formed the Literature & Medicine program that has been running for over a decade. I knew I’d like Suzanne immediately when her first words to me were, “Well, let’s discuss our mutual favorite topic: narrative medicine.”

Under Suzanne’s guidance, I went on to establish a Literature & Medicine program at my own institution in Seattle, and she has since become Massachusetts General Hospital’s first Writer-in-Residence.

So when I heard that she and Neal Baer were starting a Media & Medicine course at Harvard, looking at how we can use storytelling to address pressing public health issues, I knew I wanted to be involved.

This past week, the inaugural Media & Medicine class met together in Boston for five days of lectures and networking, community and conversation. With a cohort of 50 people from all over the world, there was rich discussion and consideration of how we can use journalism and podcasting, op-eds and plays to address issues in healthcare.

I was impressed with the many innovative ideas, including implementing design thinking to tackle complex healthcare problems, weaving public health education into television and plays, and using solutions journalism to show that “better is possible” to enact change. Keynote speaker Dr. Leana Wen urged us to start with our authentic selves and stick with the voice we know. We collectively wrote op-ed pitches, practiced playback theater techniques, critiqued podcasts, and turned partner stories into playdough and pipe cleaner art.

I met an impressive group of healthcare professionals from all over the world, eager to expand on work in public health, mental health, health disparities, physician wellness, and chronic disease. We learned from each other, advised each other, helped with networking solutions and built our own community of advocates for storytelling and listening, which we’ll continue to grow over the next six months as we work on specific public health projects.

I had so many rich conversations, and heard from experts in media and storytelling. I’m leaving Boston invigorated and exhausted. I can’t wait to work on my own project, focusing on mental illness, and support and champion the work of my fellow colleagues. Although taxing for introverts like me, I’m so glad I had that conversation, shared my story with the women physicians I met at that conference back in 2018. It speaks to the power of personal connection, of telling our stories with vulnerability and hope, and this, I think, is what the Media & Medicine program is all about.

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Narrative Medicine

Narrative Medicine Monday: What almost dying taught me about living

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Writer and speaker Suleika Jaouad urges us to rethink the binary nature of health and illness in her TED talk “What almost dying taught me about living.”

Jaouad, diagnosed with leukemia herself at the young age of 22, questions the narrative of cancer survivor as a hero’s journey. She recalls that “the hardest part of my cancer experience began once the cancer was gone. That heroic journey of the survivor… it’s a myth. It isn’t just untrue, it’s dangerous, because it erases the very real challenges of recovery.”

Jaouad finds herself discharged from the hospital and struggling with reentry to life. She had spent all of her energy just trying to survive, and now needs to find a new way of living amidst expectations of constant gratitude and labels of heroism. 

Her assertion is that often the most challenging aspect of a jarring interruption to life occurs after the inciting event or episode, in her case, cancer, has resolved. It is the attempt in weeks, months, years after to readjust to the daily act of living that can be the most grueling. She notes that “we talk about reentry in the context of war and incarceration. But we don’t talk about it as much in the context of other kinds of traumatic experiences, like an illness.” Jaouad urges us instead to accept that there is a spectrum of health and illness, and we should “find ways to live in the in-between place, managing whatever body and mind we currently have.”

Through writing a column about her experience fighting cancer and reentry into the world of the well, Jaouad begins getting letters from a vast array of people who relate to her story, her inspiration that “you can be held hostage by the worst thing that’s ever happened to you and allow it to hijack your remaining days, or you can find a way forward.”

Jaouad herself seems to find a way forward by sharing her story and connecting with others. Her struggle certainly resonates with me and my own recent life interruption. This concept of the nonbinary nature of well and unwell is also important for medical providers to consider. As primary care physicians, we are the ones who not only deliver a life altering diagnosis, but also who continue to care for patients long after their bodies recover or continue on with a chronic disease. I’m looking forward to reading Jaouad’s book on this topic, Between Two Kingdoms, out next year.

In the end, Jaouad concludes that we need to “stop seeing our health as binary, between sick and healthy, well and unwell, whole and broken; to stop thinking that there’s some beautiful, perfect state of wellness to strive for; and to quit living in a state of constant dissatisfaction until we reach it.”

Writing Prompt: Jaouad assures us that every single one of us will have our life interrupted, either by illness or “some other heartbreak or trauma.” Think of a a time your life has been interrupted. What was the hardest aspect for you? What was your experience of “reentry?” Alternatively, think about the concepts of health and illness. What do these words mean to you, either as a patient or as a medical provider? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: How Storytelling Can Help Young Doctors Become More Resilient

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Physician and author Dr. Jessica Zitter shows “How Storytelling Can Help Young Doctors Become More Resilient” in her recent essay in the Harvard Business Review. We know that this issue is vital to increasingly stretched and stressed medical providers, the consequences of which are discussed in previous Narrative Medicine Monday posts here and here. I wrote a short piece in Pulse for their “Stress and Burnout” issue that outlines a typical day for a modern primary care physician and have also studied and taught narrative medicine as a tool to better care for our patients and ourselves. Zitter has a unique perspective on the particular challenges for physicians and patients in end of life care, given she is board certified in both critical care and palliative care medicine.

Zitter addresses this issue through a “new program which uses storytelling to help young doctors reflect on how they handle the emotional and psychological toll of caring for suffering patients.” She opens up to a group of new physicians about running the code of a young woman in the ICU, the resistance to letting a patient go, even when nothing remains other than suffering: “We are expected to be brave, confident, and above all, to never give up.  And all the more so in particular cases, such as when a patient is young, previously healthy, or has a condition that appears reversible on admission. And in cases when our well-intended but risky interventions might have actually made things worse, it is almost impossible to let go.”

When the experienced Zitter suggests that they instead institute pain management and sedation rather than attempt resuscitation the next time her heart stops, the physicians-in-training bristle. She questions a culture that promotes doing everything, including “this technique, that intervention, a whole host of options that would never have saved this woman.” Zitter admits she gives in to the other physicians, decides to fight “to the end, the way real heroes do.” The result is tragic. “The patient died a terrible death.”

Zitter reflects on this experience and shares it in the hope that it will help other young physicians who will certainly encounter the same, given that our culture and medical training makes it so “we often feel unable to question or diverge from scripted approaches — ones which may actually cause more suffering than benefit.”

To combat this, Zitter looks to storytelling, asserting that “[d]ata show that the use of stories to process the challenging experience of being a doctor increases empathy, enhances wellness and resilience, and promotes a more humanistic health care culture.” After Zitter shares her story with the group, others begin opening up about their own experiences and a “genuine conversation proceeded, one which addressed the emotional pitfalls and psychological challenges of this work.”

Zitter is also part of a 2016 Netflix documentary called “Extremis.” This short film takes a hard look at the grueling decisions patients’ families, and the physicians who inform them, make near the end of life in the ICU. In it, you can appreciate the need to “provide safe spaces for healthcare professionals to reflect on and process their own suffering. Then we will be fully available to do the hard work of patient-centered decision making in the moments when it is really needed — at the bedside of a dying patient.”

Writing Prompt:  Have you had to help make decisions for a patient who is critically ill in the ICU? What issues came up? How was your interaction with the medical team that cared for your loved one? Alternatively, consider watching the short documentary “Extremis” and write about a moment that struck you or perhaps changed your way of thinking about end of life care. If you’re a medical professional, think of a time you witnessed an end of life situation when the patient experienced more suffering than was necessary. Do you agree that our culture contributes to performing “risky interventions” that “might have actually made things worse,” because we insist on fighting “to the end, the way real heroes do?” How do you think sharing such stories might promote wellness? Consider writing about a challenging situation from the perspective of the attending doctor, the resident, the patient, the nurse, the family member. Write for 10 minutes.

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Narrative Medicine Monday: My Human Doctor

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Dr. Sara Manning Peskin writes in the New York Times about the fallibility of physicians and its emotional toll in “My Human Doctor.” Peskin introduces us to her patient, Shirley, who was given a diagnosis of multiple sclerosis. This patient finds that in assuming this chronic, often debilitating, disease, even the very word itself “crippled her. She’d stopped driving, stopped working, and adjusted to the stigma of having a chronic disease.” After a hospitalization due to a serious reaction to one of her medications, it was discovered that “Shirley might not have had multiple sclerosis at all.”

Peskin reflects that in medical training we do discuss errors but “[w]e don’t talk about the emotional trauma of hurting a patient. Instead, most physicians cope with guilt, self-doubt and fear of litigation in private. After our patients, we become ‘second victims’ of our mistakes.” Given the recent spotlight on depression and burnout in medicine, Peskin highlights an important point that we ignore to our peril. Some organizations are realizing this and offering more programs such as Balint, peer support groups, and expanded counseling services to explore and address this emotional trauma.

When Peskin suffers the consequences of a mistake made by her own physician, the response she receives is “‘I can’t turn back time.'” Peskin experiences first hand that “[a]pologies are difficult for doctors, not only because we have to cope with hurting someone, but also because we are scared of the legal implications of admitting culpability.” Peskin outlines how the U.S. system differs from many other countries, where the “‘no-fault’ system is based on injury from medical care and not on proof of physician negligence…” and “doctors and patients remain on the same side, and more patients get paid.”

Peskin does end up apologizing to her patient, Shirley, for the misdiagnosis of multiple sclerosis. They were then able to move forward in the doctor-patient relationship and discuss Shirley’s adjustment to the “possibility of not having a chronic disease.”

Writing Prompt: Think of a time your doctor made a mistake. How did they approach the error? Did they apologize? If you’re a physician, think of a mistake that you or a colleague made that is particularly memorable. What happened and how did you respond? How did the situation affect the patient-physician relationship? Consider writing about this experience from both the patient and the medical provider’s perspective. Write for 10 minutes.

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Narrative Medicine Monday: Out of the Straightjacket

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In recent years the importance of physician burnout, depression and the high suicide rate among physicians has become more visible. The New York Times article “Taking Care of the Physician” notes that physicians are “approximately twice the relative risk of suicide compared to people in other professions” and aren’t adequately trained to deal with many of the stressors that being a medical provider entail: “how to deal with conflict, how to deal with negotiation, how to deal with the distress of patients”. We learn the science of medicine but don’t receive enough instruction on the skills that can lead to resiliency in an emotionally grueling profession.

Dr. Michael Weinstein bravely shares his own story of severe depression, subsequent treatment and the struggle he experienced as a surgeon who desperately needed help regarding his mental illness. Weinstein’s essay “Out of the Straitjacket” in the New England Journal of Medicine reveals how he became “profoundly depressed, delirious, and hopeless. He’d lost faith in treatment and in reasons to live.” He describes the brutal hours and culture of residency training and how he went on to become a trauma surgeon, shouldering the emotional toll that intense work can take: “We often make decisions in the face of uncertainty that deeply affect our patients’ lives. When things went wrong, I frequently blamed myself.” Weinstein illustrates the failure in the medical culture to address the frequency of burnout and depression in our profession: “I didn’t know how to talk to my coresidents or faculty about medical mistakes and the accompanying self-flagellation.” He “felt trapped in [his] work and worried that [he] would expose [his] shortcomings if [he] sought a leave or disclosed [his] feelings.” How can we change the stigma associated with such a prevalent scourge on our profession, on so many who suffer from mental illness in this world?

Recent studies on physician wellness point to the fact that “it’s more effective to make changes at the level of the institution, rather than just telling the doctors to shape up in the wellness department.” So many physicians “enter medical school deeply committed to the field, they come with the desire to be empathic and compassionate, if we just create a system that nurtures what they come with then we will have less burnout and higher quality care.” How can we best change our institutions, our culture, to promote wellness in those who care for our health?

Writing Prompt: Do you or a colleague suffer from burnout or depression? How has your institution helped address this issue? How has it failed in addressing this issue? As a patient, what are your thoughts about Dr. McClafferty’s statement in the New York Times article: “If you’re my physician, I want you to be in good shape mentally, physically and emotionally, so you can be really successful at helping me”? If you’ve personally suffered from depression, what stigma did you experience? What was most helpful, from individuals or from your workplace, for recovery? Write for 10 minutes.

If you are suffering from depression or burnout, there is help:

For Physicians: AMA’s Steps Forward

For Patients and Physicians: National Suicide Prevention Lifeline

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Narrative Medicine

Narrative Medicine Monday: Reprieve

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In his poem “Reprieve,” Jeffrey Harrison writes about the several months following a cancerous brain tumor removal. Everyone is able to take a breath while the patient resumes his daily activities. Although it seemed “a miracle almost,” they “all still wondered how long it would last.” The narrator questions if this time period felt like an “afterlife” to the patient. I like how the narrator lists the simple daily tasks the patient was able to resume, giving us a glimpse into his life and what he had been missing because his illness. 

Have you or a loved one had a serious illness that, for a time, seemed resolved? How did you feel when the treatment worked? If the illness recurred, how did you look back on that time period?

Writing prompt: Think about a time when you, a patient or a loved one was well following a serious illness. Were you able to trust in that period of wellness? Were you always wondering if the illness might come back? If so, how did that undercurrent of worry limit you? How did it feel to grow strong again or resume your daily activities? Write for 10 minutes. 

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