"Reading" Patients When Illiteracy is What Afflicts Them: A reflection by medical oncologist Jose Bufill

While returning to the U.S. on an international flight not long ago, I sat next to a young African woman. As we approached our destination, she sheepishly passed me her passport and a customs form. Since I was in the aisle seat, I assumed she wanted me to pass it along to the flight attendant, until I realized the form was blank.  She was asking me to fill it out.

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Playing Favorites: When Caregivers Recognize a Wider Capacity to Love by Flo Gelo

“The Favorite” (Spring 2021 Intima) by clinician Amy Tubay is a story about having one. It’s a story about the defiant heart—how certain patients enter our affections in ways that are largely mysterious. That love—a love that overrides rules and regulations—isn't something we pay enough attention to in the health professions.

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When Medical Professionals Care for Their Own: A Response to “Of Prematurity and Parental Leave,” by Mason Vierra

Of Prematurity and Parental Leave(Intima, Fall 2021) describes the harrowing experience of giving birth to a premature baby during residency. It’s written by doctors married to each other —Dr. Campagnaro and Dr. Woodside—who co-construct a narrative by telling it from their own perspective.

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Becoming the Superheroes Our Parents Need: The Journey from Child to Worthy Caretaker by Usman Hameedi

Our parents are often our first examples of superheroes. They make gourmet meals from minimum wage, give hugs that vanquish our demons, and provide limitless love. They are impervious to damage or decay and are always ready to save our days. So, seeing the human in them, the mortality in their breath is unsettling. When they come to need us, we feel so grossly unprepared.

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What Does ‘Paying Attention’ Mean in a Healthcare Setting? A Reflection by Ewan Bowlby

Ewan Bowlby  is a doctoral student at the Institute for Theology, Imagination and the Arts (ITIA) in St Andrews. He is researching ways of using mass-media artworks to design new arts-based interventions providing emotional, psychological and spiritual care for cancer patients. Bowlby’s paper “Talk to me like I was a person you loved”: Including Patients’ Perspectives in Cinemeducation” appears in the Spring 2021 Intima: A Journal of Narrative Medicine.

Ewan Bowlby  is a doctoral student at the Institute for Theology, Imagination and the Arts (ITIA) in St Andrews. He is researching ways of using mass-media artworks to design new arts-based interventions providing emotional, psychological and spiritual care for cancer patients. Bowlby’s paper “Talk to me like I was a person you loved”: Including Patients’ Perspectives in Cinemeducation” appears in the Spring 2021 Intima: A Journal of Narrative Medicine.

Narrative Medicine is about creating connections: finding words, ideas or stories that bridge the gap between patients and health professionals. This search for common ground is beautifully rendered in Carol Scott-Conner’s short story “Christmas Rose” (Spring 2017 Intima). Her fictional narrative reveals how mutual understanding can emerge in unexpected places. An encounter between the resolute, inscrutable Mrs. Helversen and her oncologist shows that the relationship between a physician and patient can flourish when the physician pays attention to the intimate, personal details of a patient’s story.

Initially, the clinical encounter in “Christmas Rose” seems unpromising, hampered by reticence and disagreement. Mrs. Helversen, who has a neglected tumor on her breast, has been “strong-armed” into a cancer clinic by her concerned daughter, and she is not receptive to the prospect of treatment. Scott-Conner, a Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine, switches the first-person narrative from Mrs. Helversen to her oncologist, allowing the reader to inhabit two alternative perspectives on the same meeting and reminding us that the same interaction can be interpreted very differently.

When I wrote an academic article that appears in the Spring 2021 Intima proposing that patients’ perspectives should be included in “cinemeducation,” these differences in interpretation were central to my argument. Showing clips from films to encourage medical students to relate to a fictional patient is an excellent idea. Yet listening to how patients respond to these clips can enrich this pedagogical method. As I demonstrate through the qualitative research presented in my article, patients “see things differently.” The same fictional scene featuring a patient-doctor interaction can draw responses from patients that surprise and challenge healthcare professionals. So, why not use such scenes as a space in which different perspectives can be expressed and discussed, bringing patients and providers together through the audio-visual medium?

In “Christmas Rose,” it is a rock that facilitates this meeting of minds. While the oncologist is surprised when Mrs. Helversen describes her tumor as a “rose,” betraying a complex emotional attachment to the growth, she finds a way to react empathetically and imaginatively to Mrs. Helversen’s unusual behavior. Offering the elderly patient a desert rose rock in exchange for her tumorous “rose,” the oncologist persuades Mrs. Helversen to accept treatment. This fictional oncologist shows an adaptability and ingenuity that the health professionals involved in my research also exhibited. In my article, I describe how health professionals engaged constructively with patient’s unique or unexpected responses to imagined patient-doctor interactions in films. Listening to both sides and hearing alternative perspectives on the same encounter can yield important, enlightening insights, whether one is participating in a focus group, watching film clips or doing a close reading of a short story such as “Christmas Rose.


Ewan Bowlby  is a doctoral student at the Institute for Theology, Imagination and the Arts (ITIA) in St Andrews. He is researching ways of using mass-media artworks to design new arts-based interventions providing emotional, psychological and spiritual care for cancer patients. This involves using fictional narratives, characters, and imagery to reflect and reframe patients' experiences of living with cancer, helping them to understand and articulate the effect of cancer on their lives. He is developing the impact of his research through an ongoing collaboration with Maggie Jencks Cancer Care Trust (Maggie's) and Northumberland Cancer Support Group (NCSG). Other interests include theological engagement with popular culture, the relationship between theology and humor and the use of narrative form for theological expression. Bowlby’s paper “Talk to me like I was a person you loved”: Including Patients’ Perspectives in Cinemeducation” appears in the Spring 2021 Intima: A Journal of Narrative Medicine.

"Chronic Black Excellence," a reflection on the power of poetry to reflect structural racism by Elizabeth Walmsley

The poem compelled us to face the magnitude of ways in which our systems have been designed by white people for white people. It especially highlights the workings of a system that rewards Black people for separating themselves from their own communities; the classic effect of forced assimilation. The poem illustrated to us that structural racism demands so much of Black people—not only to work ten times harder than their white counterparts in order to be seen, but also to separate themselves to gain a moderate level of success and recognition. And yet, as our group considered, was the hard won success all it purported to be?

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Losing Touch: How COVID-19 Has Interfered With the Way We Bond by Adam Lalley, MD

The intimacy of touch is deeply rooted in vulnerability, and COVID-19 is reminding us that this vulnerability is biological as well as emotional. For Dr. Vlasic, touch was an act of trust, but nowadays trust seems best measured by how far apart we stand and how carefully we obscure the lower half of our faces.

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The Balance of Blame, When Something Goes Wrong, a reflection on "Physician as Enabler" by Philip Berry

In my article ‘Semantics in the Elevator’ a doctor reflects on his culpability after a colonoscopic perforation (not based on a real incident). The patient’s anatomy is fleetingly blamed; then he considers the fact that he just happened to be in the wrong place at the right time – the perforation could well have happened if a colleague had been doing the procedure. 

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What Was, What Is and What Will Be: A reflection on the poem “Decision” by Ron Lands by: Tharshika Thangarasa

Tharshika Thangarasa is a daughter, sister, friend and fourth year medical student at the University of Ottawa. Her artwork “Stroked” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

Tharshika Thangarasa is a daughter, sister, friend and fourth year medical student at the University of Ottawa. Her artwork “Stroked” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

It is incredible how abruptly and drastically things can change. Nowhere is this more evident than in medicine.

In his beautiful piece “Decisions”, Ron Lands takes the reader through the delicate moments preceding the disclosure of a medical diagnosis to a patient. Holding the weight of the individual’s new reality, hesitant to pass it on… unsure of whether or not the person has the supports necessary to bear it.

The concept of a new reality, seemingly defined by disease is also depicted in my studio artwork entitled “Stroked”. In this image, the intricate cerebral vasculature is depicted as the branches of a tree. They serve as the highway through which nutrients are able to reach the leaf buds, allowing them to blossom. They allow blood to nourish the neurons of our higher level cortical areas, those that form our identities. A stroke, represented by the burning of these branches, is one example of a medical phenomenon that can unexpectedly, and eternally, alter a person’s life.

Yet, the task of disclosing this to the patient is in the hands of the provider. A person, who too can struggle with it’s magnitude. Providers, patients, families… no one is immune to the sometimes devastating consequences of disease.


Tharshika Thangarasa is a daughter, sister, friend and fourth year medical student at the University of Ottawa. She cultivates her own wellness at the intersection of art and medicine, and hopes to continue to embrace the humanities on her journey to becoming a psychiatrist. Her artwork “Stroked” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.


©2019 Intima: A Journal of Narrative Medicine

The Art of Sparing: When the Patient May Not Want to "Hear it Straight" by Xanthia Tucker

In her poem “Overwhelmed” (Spring 2013 Intima), Kendra Peterson shares a terminal diagnosis with her patient. “I told the harsh and ugly truth/ of glioblastoma multiforme,” she writes, “my practiced words unresectable and infiltrating.” In honoring his wish “just to hear it straight,” her words both describe and become his diagnosis. Once spoken, they are “unresectable and infiltrating” his understanding of the rest of his life.

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Thinking about Love, Death and Suicide by Andrea Rosenhaft

When I attempted suicide last year, in March of 2014, I didn’t write a suicide note even though I am a writer. Instead, after I took the overdose, I stumbled back to my bedroom, collapsed into a tangle of blankets and sheets and sobbed as I murmured goodbyes to my cat, Zoe. I closed my eyes and stroked her soft fur with one hand as I waited patiently to die.

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Be Patient, Listen to your Patient: A Reflection on the Difficulties of Describing a Disease by Suzanne Edison

Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. Her poem "The Body Live…

Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. Her poem "The Body Lives Its Undoing" appears in the Spring 2018 Intima.

In Rachel Betesh’s poem “Admission Assessment” that appeared in the Fall 2014 Intima, the doctor observes a patient, finding the words to describe both his condition and her understanding of his experiences. She listens well, using precise language. Her first observation is visual, she sees his posture, but almost immediately that awareness is paired with hearing his breathing. She says:

 so measured these breaths break: shallow

            like rainwater with nowhere to settle:

            he parcels air; he can’t give it away.

 

Breath as a parcel, a package that can’t be given away. Breath is precious and difficult simultaneously. As a reader I am pulled into a field of empathy; the doctor trying to understand her experience of the man. She listens acutely to his “ragged song of breathing.” and “the natural sweetness of the body / reduced to laboring: an immeasurable effort,…”

The doctor listens to what is being said as well as what is not being said. She hears his breathing and his words. He “cradles” his hand, the size of a grapefruit, and says, “now it’s everyplace, / and the air seeps and sings out, out without measure.”

She thinks his words are the most salient reason for hospitalization and should be in her assessment: “now it’s everyplace.”

The doctor is aware that not everything can be seen, that this hand is the most visible aspect of his cancer; but she knows it is in his kidneys as well.

I am reminded of William Osler’s words of wisdom to his medical students at Johns Hopkins, “Listen to your patient, he is telling you the diagnosis.”

What can’t be seen is often true in autoimmune diseases as well. Listening to a patient describe the experience of his or her body might help a doctor find a diagnosis, but not always.  My poem, “The Body Lives Its Undoing” (Spring 2018), speaks to this experience. Initially I use the words koyaanisqatsi and uggianaqtu from Native people’s languages that speak directly to a “life out of balance,” to the body “behaving strangely.” Then, I try to enact the feelings of the patient through the sounds of words: cawing, cacophony, clattering; hard ‘c’ sounds that cut, which lead to the image of chaos.

How to let others know the internal feeling of an autoimmune disease.  Not only the sounds of feelings, but in images such as “cascading through flames / joints and muscles dragging like a loose muffler on asphalt” that try to portray the feelings of exhaustion and inflammation that come with most autoimmune diseases.

The patient in my poem wants to find balance, knows she is “listing” in a “turbulent sea” with disease, but wants to navigate it with “…my hand      on the tiller.”

Listening with eyes, ears and an open heart and mind is what most patients want and need, even if there is no definitive diagnosis, treatment or cure. Hearing their words and giving attention creates empathy, which goes a long way towards healing and helps the patient deal with the ups and downs of a disease.


Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. She has been awarded grants from Artist Trust; Seattle City Artists, and 4Culture of King County, Seattle. Poems are forthcoming in About Place Journal; Other poetry can be found in: JAMA; SWWIM; What Rough Beast; Bombay Gin; The Naugatuck River Review; The Ekphrastic Review; and in several anthologies including The Healing Art of Writing, Volume One. She is a board member of the Cure JM Foundation and teaches writing workshops at Seattle Children’s Hospital and Richard Hugo House in Seattle. www.seedison.com. Her poem "The Body Lives Its Undoing" appears in the Spring 2018 Intima.

 

Life and Death in the ER: What's Real, What's Fiction? by Carol Scott Connor

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Readers of my piece "After Midnight" often ask me, “What happened to the cop?”

I answer, “It’s fiction. There never was any cop.” But the truth is more complex than that.

There were patients very similar to this during my medical school and residency years. From those memories I can say with confidence that although the piece ends with the cop about to arrive, alive, in the Recovery room, he almost certainly would not have survived to leave the hospital. As subsequent decades passed, we became more facile in resuscitation, better attuned to the factors that predict a successful outcome. In that time, at that place, we simply did everything we could to fight for life.

As you may have guessed, the piece is firmly rooted in my own experience as a wide-eyed medical student. Originally destined for a career in the cerebral specialty of cardiology, I became a convert to surgery after a night when the team (at least temporarily) cheated death and everything seemed possible. When the swoosh of the dark wings of death could be heard, and we seemed to be able to beat that old carrion-bird back into the darkness. And the night ended with a trip across the roof to start rounds.

A far more realistic and nuanced view is presented by Anna Belc in “Getting to Know Dying.” She writes of the early recognition of imminent death in those who are in the zone of criticality. She speaks of anticipating death so as to better be able to prevent it – for example, for a patient at risk of bleeding out, start two large-bore IV’s.

She also speaks of the difficulty preparing the survivors, the family. And, implicit in all of this, is the personal toll on the healthcare team. Those who deliberately choose to work in the zone where life and death intersect are, indeed, very special people.


Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. She writes memoir in the form of fiction, exploring the world of women in surgery. Her stories have been published in multiple literary journals ranging from “The Healing Muse” through “North Dakota Quarterly,” and nominated for a Pushcart Prize. A collection of her short stories was published as “A Few Small Moments.” She is past editor-in-chief of “The Examined Life Journal: A Literary Journal of the Carver College of Medicine” and currently serves as its fiction editor. "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Life and Death in the ER: What's Real and What's Fiction? by Carol EH Scott-Conner MD PhD

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" pays homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" pays homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Readers of my piece "After Midnight" often ask me, “What happened to the cop?”

I answer, “It’s fiction. There never was any cop.” But the truth is more complex than that.

There were patients very similar to this during my medical school and residency years. From those memories I can say with confidence that although the piece ends with the cop about to arrive, alive, in the Recovery room, he almost certainly would not have survived to leave the hospital. As subsequent decades passed, we became more facile in resuscitation, better attuned to the factors that predict a successful outcome. In that time, at that place, we simply did everything we could to fight for life.

As you may have guessed, the piece is firmly rooted in my own experience as a wide-eyed medical student. Originally destined for a career in the cerebral specialty of cardiology, I became a convert to surgery after a night when the team (at least temporarily) cheated death and everything seemed possible. When the swoosh of the dark wings of death could be heard, and we seemed to be able to beat that old carrion-bird back into the darkness. And the night ended with a trip across the roof to start rounds.

A far more realistic and nuanced view is presented by Anna Belc in “Getting to Know Dying.” She writes of the early recognition of imminent death in those who are in the zone of criticality. She speaks of anticipating death so as to better be able to prevent it – for example, for a patient at risk of bleeding out, start two large-bore IV’s.

She also speaks of the difficulty preparing the survivors, the family. And, implicit in all of this, is the personal toll on the healthcare team. Those who deliberately choose to work in the zone where life and death intersect are, indeed, very special people.


Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. She writes memoir in the form of fiction, exploring the world of women in surgery. Her stories have been published in multiple literary journals ranging from “The Healing Muse” through “North Dakota Quarterly,” and nominated for a Pushcart Prize. A collection of her short stories was published as “A Few Small Moments.” She is past editor-in-chief of “The Examined Life Journal: A Literary Journal of the Carver College of Medicine” and currently serves as its fiction editor. "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

A Matrix for Healing: Understanding the Psychic and Moral Wounds on Clinicians During Wartime by Michael Brown, OD

Dr. Brown, in his evocative and poignant essay “The Moral Matrix of Wartime Medicine,” (Intima, Fall 2015), describes his experiences as a young physician during the Vietnam War and both the immediate and long-term effects of the psychic and moral wounds he and other military medical personnel accrued while serving in combat zones.

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