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.

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

“Daily life is a massacre”: A reflection on “Now and Then,” John Jacobson’s essay about caregiving, by Marilena Vimercati

Marilena Vimercati, author of the research paper "Embraced by Words" (Fall 2019 Intima) with Rossana Di Renzo, lives and works in Milan where she collaborates with ISMU—Initiatives and Studies on Multiethnicity, an independent scientific body—to carry out projects focusing on interaction between migration processes and training paths for professionals.

“Nobody knows our daily life. Daily life is a massacre.” That is what we were told by one of the caregivers we interviewed and the detailed description of that burden is exactly what I found in “Now and Then,” John Jacobson’s Field Notes essay (Fall 2018 Intima). Jacobson, a caregiver who assists his wife Claudia, lives days that are marked exclusively by the care for her: There is no room for his personal life.

He, who had a career for years, now uses vacation days to accompany his wife to the doctor; he, who was always on time at work, now often calls to say he will be late. He does not want to know anything about his friends’ holidays, or their career advancements, or the changes they have made to their homes.

“Meaningful” is what he said when he met a friend recently, who had returned from a holiday in Europe: “While you were away, I emptied bedpans!” As much as he would like Claudia’s help in the kitchen, now he must do everything by himself. (“I both had Claudia and didn’t have her.”)

The weight of now is really palpable in his narrative: Jacobson cannot imagine his future because on the one hand he feels crushed by the duties of everyday life—the same feeling that another caregiver interviewed by us calls ‘roller coaster’— that is a daily life full of tiring climbs, free falls, suspensions, and turns that could lead to derailing if not managed well. On the other hand there is the weight of the loss of what Claudia was and meant to him: “Now I spend too much time counting losses. I remember coming here with Claudia, holding hands as we walked along this path. I feel guilty to say it, but I wished I had someone holding my hand now.”

For Jacobson, as well as for the many caregivers we met, the emotional burden to be a caregiver is so heavy that the future is annihilated by the present. “I don’t want to think about tomorrow. I’m scared of that. My mantra is here and now.”

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Marilena Vimercati, author of "Embraced by Words" (Fall 2019 Intima) with Rossana Di Renzo, lives and works in Milan where collaborates with ISMU – Initiatives and Studies on Multiethnicity—an independent scientific body—to carry out projects focusing on interaction between migration processes and training paths for professionals.

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

Swimming Alone: Thoughts on What It’s Like Being a Medical Student Thrown Into the Proverbial Deep End of the Hospital Wards by Thomas J. Doyle, MD

Thomas J. Doyle MD is an internist who lives in Providence, Rhode Island. His Field Notes essay "To Pronounce" appeared in the Spring 2018 Intima: A Journal of Narrative Medicine.

I can’t recall the first time I performed a death pronouncement. I’m sure I was taught how to diagnose death, but I can’t summon to mind much in the way of specifics. My recollections are vague, often from nights on call as a student or intern tagging along with senior residents as they performed death pronouncements on the wards.

On the other hand I can immediately summon to mind many other experiences from the pressure cooker of medical training. I can visualize the frothy trachea of an enormous man in respiratory failure whom I successfully intubated during a rotation in the ICU. I still cringe recalling ribs cracking under my palms as I performed CPR on a frail elderly man. I pushed rapidly on his sternum and recoiled internally even as I knew my technique was correct, recalling an attending’s advice that “sometimes you need to break some ribs for a good cardiopulmonary massage.”

I feel a personal sense of loss that I didn’t write down the emotional impact of my early experiences in learning to diagnose death. My essay “To Pronounce” is an attempt to make up for that loss.

And it is with that sense of loss in mind that I applaud William Fyfe for his essay “No Time For Tears Today,” published in the Fall 2017 Intima: A Journal of Narrative Medicine under ‘Field Notes.’ In concise, immediate, elegant prose, he captures the essence of what it’s like to be a medical student thrown into the proverbial deep end of the hospital wards. Many of Fyfe’s words resonate with my memories of training: “chaos,” “imposter,” “sheepish,” “drained,” “ashamed,” “unexpected.”

In particular, his essay captures an unspoken lesson students are expected to absorb while keeping their heads above water – that in medicine we are expected to swim because – well, because that’s just what we have to do.

Fyfe’s prose, however, hints at the emotional isolation that can creep into our lives in medicine very early on, and locates the reader squarely in the proverbial moment when we may momentarily “get it together” to confidently function with humanity.

I like to think that Fyfe’s title is intended to convey a touch of irony because, after all, a decent amount of the reason there are so many among us who become numb or burned out is because we can’t, or don’t, let ourselves have time for tears at least once in a while.

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Thomas J. Doyle MD is an internist who lives in Providence, Rhode Island. He graduated from The Warren Alpert School of Medicine at Brown University in 2003 and completed training in internal medicine at Rhode Island Hospital. He practices inpatient hospital medicine at Charlton Memorial Hospital in Fall River, MA. His Field Notes essay "To Pronounce" appeared in the Spring 2018 Intima: A Journal of Narrative Medicine

How We Might Use a ‘Script’ in Navigating a Diagnosis of Breast Cancer by Lori Duin Kelly

Lori Duin Kelly was the founder and longtime chair of the Body and Physical Culture area of the Popular Culture Association. Her paper "The Scar Project: Visual Language for Telling the Story of Breast Cancer in Women" appeared in the Spring 2017 Intima: A Journal of Narrative Medicine.

In my article "The Scar Project: Visual Language for Telling the Story of Breast Cancer in Women" in the 2017 Spring issue of Intima, I was interested in exploring the notion of scripts women use to navigate a diagnosis of breast cancer, and the extent to which these scripts co-opt and direct a patient's thoughts about that medical experience. In particular, I was contrasting the different approaches employed by Susan Komen's "pink culture" with the stark black and white images of post mastectomy patients in David Jay's S.C.A.R. project.

Joy Liu's short story, "Triumphant," in that same issue adds to that notion of scripts and the role they play in medicine, only here the script is one written by a young researcher who has just completed a research fellowship, and feeling empowered by that experience, is confident in her ability to "blast [the cancer of her patient] into oblivion."

Part of the confidence the young physician is feeling is a consequence of another script, that generated by the company who produced a new drug with great promise in fighting renal cancer. That script of the drug company becomes easily incorporated into the script that directs the physician's performance with her patient, in large part because that script is consistent with the narrative the physician wishes to tell.

The patient, meanwhile, has his own script, and a major conflict in the story arises when these scripts come into conflict. The patient's script, which discloses that the medication causes memory lapses, crippling back pain, as well as acne across his whole body, elicits --perhaps requires-- a response from the physician that having a lot of symptoms "is a sign that the medication is probably working." Such optimism becomes harder to sustain when the next CAT scan appears. The diminished size of some lesions but the generation of new ones show results that are equivocal at best, and certainly not consistent with physician's scripted outcome for this patient, the "applause from my auditoriums of admirers," "the living testament to my mastery of renal cell carcinoma."

In the course of righting her own disappointment, the physician fails to pick up on the story that is playing out in the patient's life. His statement about his unwillingness to "throw away what's left on someone else's rainbow," his tears when his girlfriend leaves him and he is left alone with no one to settle his estate once he dies, are strong lines in the dialogue of his script, but the researcher is so embedded within her own narrative, so caught up in her own frustration over the results of the trial, that she is unable to respond, except to offer another script, one that involves his being transitioned to traditional therapy. Only after her patient takes his life do his words begin to resonate with the deep understanding of how the script of his cancer read for him.

The power of scripts, like diagnosis, is that they give shape to the chaos that is illness. They offer a direction to go, actions to take. The danger of scripts is that their power in directing the narrative can become so dominant that they fail to admit into their account competing story lines that also insist on playing themselves out. "Triumphant" ends on a positive note: the physician produces a paper that explores depression and suicide in cancer patients. But the caveat that "Soft studies don't publish well" suggests an awareness of the complex structures that undergird all narratives, and how the dissemination of some scripts sometimes comes at the peril of the omission of others, equally important and compelling.

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Lori Duin Kelly was the founder and longtime chair of the Body and Physical Culture area of the Popular Culture Association. Now retired from fulltime teaching at Carroll University, Professor Kelly continues to publish work exploring the notion of how narratives become constructed around medical events and how and why the different voices within those conversations become subordinate or ascendant in constructing medical understandings. Her work has appeared recently in Sage Open and Journal of Medical Humanities.

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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.

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.

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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.

What Color is Your Stethoscope? A Reflection on How Art and Colors Affect Us as Caregivers by Alice Wang

Alice Wang is a third-year undergraduate student at Stanford University studying Materials Science & Engineering. She is interested in the importance of interpersonal narratives in both art and medicine, and seeks to better understand the healing potential of narrative medicine. Her artwork "Beyond Blue" appears in the Spring 2018 Intima.

In her Field Notes essay “The Lady in Pink” (Spring 2013 Intima), Anne-Laure Talbot writes of a formative patient encounter she had as a medical student. She meets a delightful elderly woman dressed in a bright pink sweater, who carries with her a known diagnosis of dementia.

Talbot’s preconceptions of dementia are challenged by this woman’s personable and pleasant demeanor, by her affectionate and smiling engagement. The writer ends with a moving statement on how this encounter impacted her understanding of illness as a caregiver and empathetic individual.

This reflective essay has inspired me to think more deeply about the various facets of the illness experience, from the patient’s clinical presentation to the clinician’s worldview and biases.

Color blends the boundaries between art and medicine, serving as a fundamental element of both practices. The juxtaposition of the patient’s pink sweater with Talbot’s white coat in “The Lady in Pink” creates a vivid image that captures the dynamic of the characters and the relationship between the two. My studio art piece “Beyond Blue” (Spring 2018 Intima) similarly reflects on the ways color shapes health narratives, though we may not consciously recognize them. Inspired by Joan Didion’s memoir Blue Nights and a patient I met in clinic, this drawing seeks to tell a story through the emotional, individual, and cultural meaning embodied in color and aesthetic. I attribute my sensitivity to color to my training as an artist, just one way medical humanities have helped me become a careful and connected observer of others.

"Beyond Blue" by Alice Wang. Spring 2018 Intima: A Journal of Narrative Medicine

Whether manifested in clothing and medical garb or used in the process of diagnosis, color is another avenue through which illness narratives can be conveyed and understood. By reflecting on the stories that surround us, especially those we have the privilege of shaping, we as clinicians may begin to see the humanism that lies in the details, in the colors and sentiments not conveyed through a textbook diagnosis.

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Alice Wang is a third-year undergraduate student at Stanford University studying Materials Science & Engineering. She is interested in the importance of interpersonal narratives in both art and medicine, and seeks to better understand the healing potential of narrative medicine. Alice enjoys portrait drawing and her artwork has been exhibited in student exhibitions at the Museum of Contemporary Art San Diego and the San Diego Museum of Art. She is involved in biomaterials research for regenerative medicine at Stanford and will be applying to medical school this summer. Her artwork "Beyond Blue" appears in the Spring 2018 Intima.