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.

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.”

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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.

Caught between Floating and Drowning, a reflection about poetry, memory and adapting to chaos by Mikayla Brockmeyer

A state of flux. The COVID-19 pandemic has induced a state of “How will I react to _____?” Listlessness and emotional exhaustion bring about feelings of isolation and longing to be somewhere we are not. Yet, in learning to modify behaviors, collaborations have emerged.

In the opening couplet to Sheila Kelly’s poem entitled “Breathe” (Fall 2017 Intima). she sets the stage and introduces a poignant metaphor, depicting calmness, yet incertitude.

You are floating in the swimming pool again.
Your childhood best friend rises like prayer.

“Breathe” was penned well before the current pandemic, yet the feelings of serenity and safety one day, and panic the next, expressed are relevant today. Using a second-person narrative, she paints a vivid picture of a disjointed home life, sifting through old, painful memories. In the poem, the main character is catapulting between chaos and “floating in the swimming pool.” At the end, I interpret a sense of adaptation from the character that leaves a residue of hope.

In my essay “Turbulent Undertow” (Fall 2020 Intima), parallel feelings are grappled with, as I describe a surfing attempt, and later, my experience as a hospitalist scribe. Woven together, I write about two near-drowning experiences: on surfing and on caring for patients with COVID-19. The best friend in Sheila Kelly’s poem encourages the main character to put on her old swimsuit when distressed. After a long series of days working with the hospitalist, I, too, wanted to offer solace. But instead, all I could offer was “Glad you’re okay,” a phrase that has reverberated through my brain ever since I first heard it myself.

Riding metaphorical surfboards together and finding ways to float in metaphorical swimming pools may not be the best solution to curb the emotional toll of the pandemic. However, validation and shared human connection serve as two ways to avoid possible drowning amidst the pandemic waves.

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Mikayla Brockmeyer

Mikayla Brockmeyer is a first year osteopathic medical student at Des Moines University in Des Moines, Iowa. She began working as a hospitalist scribe in 2018, while she was enrolled in the Master of Science in Biomedical Sciences program at Des Moines University. She successfully defended her thesis in 2019 and spent her gap year scribing full time. This is her first time showcasing her storytelling abilities in a public arena. Her non-fiction essay “Turbulent Undertow” appears in the Fall 2020 Intima.

Suffering’s Generous End: From “Veterinary Lessons” to William Cass’s story “Gentle Breezes,” a reflection by poet Jane Desmond

Jane Desmond is a poet and scholar who writes about the intersections between veterinary medicine and human medicine, as well as our relations with non-human animals. Her poem “Veterinary Lessons” appears in the Fall 2019 Intima.

William Cass’s short story, “Gentle Breezes” (Fall 2019 Intima) captured so much complexity in so few words. Casting us into the end stages of the long-term caring done by divorced parents for their severely and chronically ill son, we look back to imagine their twenty years of struggle and their increasing heartbreak as debility encroaches more and more on his quality of life.

Finally, as their son appears to lose nearly all of his abilities to interact with his environment, they meet on a park bench and agree to change their custodial Advanced Care Directive for him to “Do not Resuscitate.” As they sign the papers, the poignant counterpoint to their moment of surrender is a young couple with a newborn strolling by in the park, glowing with new-parent joy and “full of anxious delight and hope” as Cass puts it—for a life yet to unfold.

In my poem in the same Fall 2019 issue, “Veterinary Lessons,” I consider the physical intimacies of palliative care for my rabbit, of providing daily fluid therapy, and the wish that the peaceful end of suffering I know her veterinarian can deliver “when the time comes” would also, someday, be available to me if I too became, like the son in Cass’s story, just a sliver of myself.

Of course, a desire for the availability of assisted suicide in the face of incurable, painful illness, is different than the burden of ending treatment for another—not our self—and different still across species. We have the option to choose euthanasia for a pet, and when we make that choice we do so out of love for our animals, although that doesn’t lessen our grief. The veterinarians know what a struggle this decision is and counsel us to consider “quality of life” in making this choice. They even provide scales for us to use to assess this life, to note activities and pleasures our sick pet still enjoys. How much “quality” is still “enough”? And enough for whom? Many veterinarians fear the client who will “never let go,” subjecting their terminally ill pet to every imaginable treatment no matter how unlikely a cure.

Many physicians too, I imagine, struggle with this issue because for humans we don’t have the transferable concept of actively choosing “a good death” that is available to veterinarians. The closest we come is the “Do Not Resuscitate” order to allow natural processes to take their course without further intervention. The ethical and political quandries of negotiating end-of-life decisions with and for humans are daunting—legally, ethically, and culturally complex. But as we become more and more able to extend human life through dramatic medical interventions, how can we also grapple with the “quality of life” issue in a rigorously ethical way that begins to approach the question of “suffering’s generous end,” as I put it in my poem? Are there “veterinary lessons” worth studying?

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Jane Desmond is a poet and scholar who writes about the intersections between veterinary medicine and human medicine, as well as our relations with non-human animals. A Professor of Anthropology at the University of Illinois at Urbana-Champaign, she also holds an affiliate faculty appointment at the College of Veterinary Medicine, and is the author of several academic books, including “Displaying Death and Animating Life “ (U. of Chicago Press, 2016). Her poetry has appeared in Persimmon Tree in the U.S. and in Words for the Wild in the U.K.

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© 2020 Intima: A Journal of Narrative Medicine

Dads, Daughters, Death by Pat Arnow

Pat Arnow is a photographer, writer, and more lately, a cartoonist in New York. She often writes and draws stories about death.Her artwork “A Death in Chicago, 1972: Elisabeth Kübler-Ross and My Family” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

A dad has cancer. He decides not to undergo a risky, possibly ineffective operation that might save him. His family supports his decision. He goes home to die.

Karen Dukess writes about this in “Day One of Dying” (Fall 2016) as if those choices were an everyday thing.

Well they are—now.

In this lovely memoir of a beloved father, it is striking to me how things have changed from when my dad faced terminal cancer in the early 1970s. Then the rule was maximum intervention no matter what the prognosis. No one would quibble with doctors. People died in hospitals.

That’s how the story begins in my comic, “A Death in Chicago, 1972: Elisabeth Kübler-Ross and My Family” (Spring 2019). As my father lay dying in a hospital bed, he received a remarkable visit from Kübler-Ross, who had recently written On Death and Dying. She allowed my dad to say out loud how he wanted to stop painful treatments and go home to die.

My father’s homecoming came on the cusp of change for the dying and for those close to them. We started talking about death. The hospice movement grew. There is help for what are still the hard and sad days of dying.

Yet so much is the same including the moments of grace. I recognized this lesson, a gift from our dads as Dukess describes it:

“Day 6 of Dying—I am becoming a better listener. Really, what can you say?”

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Pat Arnow is a photographer, writer, and more lately, a cartoonist in New York. She often writes and draws stories about death.With “A Death in Chicago, 1972,” she tells the story of her father’s dying, which involved Elisabeth Kübler-Ross, because it’s a personal story from a time of momentous change in the way we think about death.  Her artwork “A Death in Chicago, 1972: Elisabeth Kübler-Ross and My Family” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

© 2019 Intima: A Journal of Narrative Medicine

Reflecting on "The Loneliness of Dying" by Veronica Tomasic by Henry Sussman and Jeffrey Newman

Henry Sussman received his PhD in Comparative Literature from Johns Hopkins University in 1975 and taught Comparative and German Literatures at universities including Johns Hopkins, SUNY Buffalo, the Hebrew University of Jerusalem, Rutgers, and Yale. At Yale, he evolved a course in German fairy tales out of his interests in critical theory, philosophy, psychoanalysis and cybernetics. “Wisdom in the End: Folktales and Narrative Technique in End-of-Life Palliation” by Sussman and co-author Jeffrey Newman appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

In her fine essay, In the Far Canada of a Hospital Room: The Loneliness of Dying, Tomasic describes her personal experience as a conservator with end of life clients, and she refers to a variety of literature addressing the anguish and its relief from the point of view of patients themselves, clinicians, and caregivers.

In the Danish film, “At Night,” three young women on an oncology service provide each other the support and comfort ignored by the clinicians. In “Wit,” the inpatient nurse supports the protagonist through her aggressive chemotherapy. And at the end, a visiting literature professor comforts her by reading The Runaway Bunny.

Tomasic’s discussion of Tolstoy’s masterpiece The Death of Ivan Ilyich emphasizes the saintly caring of the protagonist by his loyal servant, comparing it to the psychoanalytic concept of the holding environment. And she reminds us of Holden Caulfield’s continuing ruminations on the death of his younger brother Allie, contributing to his isolation and aimlessness in the Catcher in the Rye.

Jeff Newman is a Professor in the Institute for Health & Aging at UCSF. Trained in Preventive and Internal Medicine, his previous positions were in the US Public Health Service, the California Medicare Quality Improvement Organization, and Sutter Health. “Wisdom in the End: Folktales and Narrative Technique in End-of-Life Palliation” by Newman and co-author Henry Sussman appears in the Spring 2019 Intima: A Journal of Narrative Medicine..

We believe that folk tales – the focus of our paper – can address the loneliness of dying for some patients, clinicians, and caregivers. With child-like grace, they can evoke concepts of personal accounting of successes as well as failures, enchantment and transformation, hope and wisdom, and feelings of self-compassion and acceptance in our own life-stories.

While our patients exit on their own, we can keep them company in the waiting room.

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Henry Sussman received his PhD in Comparative Literature from Johns Hopkins University in 1975 and taught Comparative and German Literatures at universities including Johns Hopkins, SUNY Buffalo, the Hebrew University of Jerusalem, Rutgers, and Yale. At Yale, he evolved a course in German fairy tales out of his interests in critical theory, philosophy, psychoanalysis and cybernetics. “Wisdom in the End: Folktales and Narrative Technique in End-of-Life Palliation” by Sussman and co-author Jeffrey Newman appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

Jeff Newman is a Professor in the Institute for Health & Aging at UCSF. Trained in Preventive and Internal Medicine, his previous positions were in the US Public Health Service, the California Medicare Quality Improvement Organization, and Sutter Health. “Wisdom in the End: Folktales and Narrative Technique in End-of-Life Palliation” by Newman and co-author Henry Sussman appears in the Spring 2019 Intima: A Journal of Narrative Medicine..

©2019 Intima: A Journal of Narrative Medicine