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.

‘New Normal. Precious Normal.’ A Reflection about Loss and Love in the Wake of COVID-19 by poet Sophia Wilson

In her poem “Oxygen” (Fall 2018 Intima), Hollis Kurman captures how poignantly the proximity of illness or death can alter the way we view others and the world:

‘…he lies
wordless, feet stilled and arms bound.
His glasses have been removed,
His pockets emptied. A life fills

those pockets, the tokens and coins,
Addresses and appointments. Cash, still.
Hints of barter expired.’

Currently, here in New Zealand, the combination of a small population (total five million), and nationwide lockdown has flattened the initial COVID-19 curve. There have been no new cases for most days over the past two weeks. The country has re-opened schools and businesses. Domestic tourism is being aggressively encouraged. There’s been a rush on fast food. Traffic is back on the roads in force.

Simultaneously, there is a risk of complacency and resurgence of infection.

It’s almost hard to recall, how we felt at the beginning of lockdown. As circumstances brought about by the pandemic change rapidly, so too, do our emotions and responses.

While the focus in New Zealand is on a return to ‘normal,’ there is also a sense of the importance of moving forward differently, in particularly with regards to the environment and each another. Today, as it happens, is not only the release date of the Spring 2020 Intima, in which my poem “Don’t Leave” appears, but the day my husband (an essential worker and subject of the poem), moves back into our home—a cause for celebration. It’s also the day I receive news that a close relative is intubated in intensive care in a Sydney hospital, with suspected COVID-19 infection. He’s forty-five years old with no comorbidity. Our loved one was well when we spoke to him last week. It’s an acute reminder the nightmare is not over.

What wouldn’t we do to keep those we love safe and close? As Hollis Kurman so movingly writes:

‘Wait, we’ve not yet

spoken today; wait, take my oxygen;
wait, the policeman called you “sir” in the
middle of the night, carrying you back to bed.
Wait.’

Both our poems express an acute appreciation for the preciousness of other people, those so familiar to us we have come to take them for granted. In my case, as for so many of us right now,  this heightened appreciation has been catalysed forcefully by COVID-19.  I hope that, like the quiet, paused moments of lockdown, it does not slip away amid the hustle and bustle of a return to ‘normality.’

Thank you, Hollis. Your poem will stay with me. And thank you, Intima, for all the brave and inspiring work you support and share.

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Sophia Wilson is a New Zealand-based writer and mother of three with a background in arts, medicine and psychiatry. Her work has appeared in StylusLit, Not Very Quiet, Ars Medica, Hektoen International, Intima, Distāntia off topic poetics, NZ Poetry Shelf, Poems in the Waiting Room, Corpus, The Otago Daily Times and elsewhere. In 2019 the manuscript for her first children’s novel, “The Guardian of Whale Mountain” was selected in the top ten for the Green Stories Competition (UK). She was shortlisted for the Takahē Monica Taylor Prize and a finalist in the Robert Burns Poetry Competition. She was winner of the 2020 International Writers Workshop Flash Fiction Competition and is the recipient of a 2020 Creative New Zealand grant.

The Caregiver’s Invisibility Cloak: A Reflection on Albert Howard Carter’s story “The Cookie Intervention” by Rossana Di Renzo

Rossana Di Renzo, author of the academic paper, "Embraced By Words" (Fall 2019 Intima) with Marilena Vimercati, lives and works in Bologna, Italy. Her interest has always been narrative and applied narrative medicine which she uses in different fields: in training courses for health professionals, in the degree course in Nursing at the University of Bologna and in research.

“Oh, there’s the PT’s car pulling up. Is it 11:00 already? Must be; Laura’s always on time. Actually I would love to go upstairs and have an hour of peace, but I do like her. She’s always so upbeat and just full of energy. Besides, she always sees progress in my husband Tom, seeing him just once a week. I see him 15 hours every day, and his recovery from the stroke is so slow that sometimes I see no progress at all. None. I’m so worn down, I just feel numb.”

This narrative from the story “The Cookie Intervention” by Albert Howard Carter brings to our minds the many women we interviewed for our paper “Embraced by Words” (Fall 2019 Intima). They told us how they looked after and cared for their husbands, sisters, brothers, children, and parents.

When dealing with the theme of disability, as in Carter’s story, people need to reassemble stories of care that mainly take place within the family, because it is often that both the place of private life and the place of care overlap.

Usually there is one person who devotes oneself to a sick person and that person is the caregiver.

Our research shows that in 50 percent of cases care work is carried out by women, who continue to define themselves not as caregivers but as wives, mothers, and partners. They consider their duty of care natural; their lives are designed only in function of the sick person.

The women we met told of their loneliness and fragility and the thousands of obstacles they have to face in everyday life without knowing how long that routine will last. 

A wife said “I’m feeling so alone. I have too much to think about. I do everything. I have a huge weight on my shoulders, everything falls on me.”

When the wishes of the caregivers cannot be fulfilled, as we read in Carter’s story (“I want my husband back”), what will help them to accept disability and their work of care and to ask for help?

Positive and powerful energies are needed in addition to personal resources. It is important to be listened to and give voice to the pain in body and in soul. The support throughout the care process, the family and social networks, the community, the closeness and authentic solidarity of others, ensure that there is a process of rewriting, of evolutionary readjustment that allows them to tolerate, manage suffering and allow themselves to be open to hope.

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Rossana Di Renzo, author of the academic paper, "Embraced By Words" (Fall 2019 Intima) with Marilena Vimercati, lives and works in Bologna, Italy.  Her interest has always been narrative and applied narrative medicine which she uses in different fields: in training courses for health professionals, in the degree course in Nursing at the University of Bologna and in research.

Embracing the Emotional and the Empathic in Healthcare by Logan Shannon

Logan M. Shannon has a BFA in Studio Art with a minor in English from the University of Iowa and an MFA in Jewelry + Metalsmithing from Rhode Island School of Design. Her essay, “The Gold Standard,” appears in the Fall 2019 Intima: A Journal of Narrative Medicine.

I’ve often wondered if having a medical degree would have better prepared me for my husband’s illness and eventual liver transplant. Would I have felt more qualified to care for him and advocate for him if I had studied hepatology instead of metalsmithing? Would my preparation for my own living donor surgery have been different if I had more than a rudimentary knowledge of what the liver does and how patients who undergo major abdominal surgery respond to traditional pain medications?

Orly Farber writes about her experience as a medical student and the daughter of a patient in “Watch and Wait” from the Spring 2019 issue of Intima. In it she describes a bifurcation, as her body travels to medical school, and her mind focuses on a different hospital, the tests her father will receive there, and the treatments he will undergo. The study of his disease becomes an extracurricular for her, long nights of studying coursework are bracketed by studying her father’s illness, but her fear and sadness about his illness and suffering don’t abate. I see in her experience similarities to my own experience, and my essay (“The Gold Standard,” Fall 2019 Intima) despite having never studied medicine: a desire to understand what a loved one is going through, to be able to answer their questions, to be able to take away at least some of the fear and pain.

I longed for a practical and high level understanding of medical terminology, tests, and what the results of those tests may indicate before and after my husband’s transplant and my own liver resection surgery. I think it would have helped me feel not quite as lost and confused as I waited to see what would happen. But there is also a universal helplessness that comes with watching someone you love be subjected to those tests and be on the receiving end of a litany of jargony language that more often manages to obfuscate rather than enlighten or soothe. Even if you are fluent in medical terminology, even if you’ve ordered the same test for a patient before, watching someone you love be at its mercy will always be a challenge.

The complexity of the health care machine and the diseases we humans endure can feel debilitating, and while specific knowledge can do much to ease the burden, we are all still doing good work when we embrace our emotional and empathic selves while caring for others.

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Logan M. Shannon has a BFA in Studio Art with a minor in English from the University of Iowa and an MFA in Jewelry + Metalsmithing from Rhode Island School of Design. She is currently writing a memoir about her experience as a living liver donor and is generally trying to convince everyone she meets that the liver is, by far, the best organ. Logan lives in New Hampshire with her husband, and their prolific sourdough starter, Seymour. Her essay, “The Gold Standard,” appears in the Fall 2019 Intima.