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

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.

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.

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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

How to Really See a Patient by Nikhil Barot

Nikhil Barot is an Associate Professor of Medicine at David Geffen School of Medicine at UCLA and practices Pulmonary & Critical Medicine and Palliative Care Medicine at Olive View-UCLA Medical Center in Los Angeles. His essay “Numb” appears in the current issue of Intima,

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Nikhil Barot is an Associate Professor of Medicine at David Geffen School of Medicine at UCLA and practices Pulmonary & Critical Medicine and Palliative Care Medicine at Olive View-UCLA Medical Center in Los Angeles. He has written essays and poetry for Nautilus, The Smart Set, Open Letters Monthly, and Medical Humanities. His non-fiction essay “Numb” 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

A Death Is Not Closure: How Poems Can Help Bring Clarity to Our Loss by Alida Rol

Alida Rol practiced as an OBGYN physician for many years. She holds an MFA in writing from Pacific University. Her poem "After A Year in Hospitals" appears in the Spring 2018 Intima.

In her poem, “Writing Elegies Like Robert Hass”(Fall 2015 Intima), Jenny Qi wrestles eloquently with the death of her mother. She hooked me with the title, and she does American poet Robert Hass, who served as Poet Laureate of the United States from 1995 to 1997, proud. This is not a sugarcoated remembrance but a wry and thoughtful, grateful and pained elegy. I assume the speaker is Qi herself.

She layers nuanced and conflicted emotions, recalling her mother’s bad habits, like scratching “bug bites until they bled,” being “petulant and stubborn,” or driving “too fast,” but also the traits that made her so endearing: She was “so greedy for living, so hasty with love.” Qi wants to remember her mother’s generous and genuine qualities, but then in the chilling final stanza recounts the burden she still carries over how her mother died. The poem transitions seamlessly between all the unsorted, colliding feelings, before it leaves us with a closing heartbreak.

For years, I tried to write poems about my brother’s death. Over time I found the memories slipped away yet, paradoxically, a clearer picture of him began to emerge. I wrote about discovering who he was in the poem, “After A Year in Hospitals,” aware that we, the living, may perhaps be reinventing the persons who can no longer speak for themselves. Although, in this poem, I did not include my own misgivings over the way my brother died, I relate very strongly to the way Qi vividly describes her torment over her mother’s last moments.

Description alone cannot do her poem justice. It needs to be read in its entirety to experience the impact. Reading Qi’s poem reminds me that poetry has the power to evoke, through concrete images and masterfully chosen words, an empathic emotional state.

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Alida Rol practiced as an OBGYN physician for many years. She holds an MFA in writing from Pacific University. Her poems and essays have won several awards and have appeared in Rhino, Passager, The Examined Life, Nasty Women Poets Anthology, and Hektoen International, among others. She lives in Eugene, Oregon. Her poem, "After a Year in Hospitals" appears in the Spring 2018 Intima.

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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