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 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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We Need More Stories From Young Patients by Kelley Yuan

Kelley Yuan will begin her studies at Sidney Kimmel Medical College in 2018 as part of the Penn State/SKMC combined BS/MD program. Her paper entitled "Stories from Kids: The Unheard Voices of Pediatric Patients" appears in the Spring 2018 Intima: A Journal of Narrative Medicine.

Thousands upon thousands of patient narratives. Remember the one from the eleven year old? Me neither.

We need more stories from young patients. They experience illness and emotions just as exquisitely as adults, if not more so. From their accounts we stand to learn a great deal about pain, hope and resilience. My piece, Stories from Kids: The Unheard Voices of Pediatric Patients, represents a small fraction of the many younger voices that narrative medicine has overlooked.

A great example of seeking youth voices is Ali Grzywna’s work, Anorexia Narratives: Stories of Illness & Healing. The accounts she gathered from anorexic teens and adults reveal how anorexia gave them a sense of control, a coping mechanism for other stressors, or a form of identity. Notably, she featured teen voices and the teen experience.

Based on this understanding of the underlying thought processes, therapy has evolved to treat anorexia. Instead of casting off the anorexic identity, patients learn to reshape the narrative to change their behavior—learning to select the healthy voice over the anorexic voice, instead of muting the anorexic voice altogether. Teen stories spurred progress.

Our current understanding of how children and adolescents interpret illness is dreadfully narrow, especially given the recent rise in juvenile autoimmune diseases and adolescent mental health issues. Without the youth perspective, our search for better treatments remains incomplete. The more we seek their stories, the more we can uncover to help these young minds and bodies heal.

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Kelley Yuan will begin her studies at Sidney Kimmel Medical College in 2018 as part of the Penn State/SKMC combined BS/MD program. She studies illustration and fences épée when she should be revising for exams. Her work seeks to capture the rare, light-hearted moments in a field filled with pain, fear, and tough decisions. Her paper entitled "Stories from Kids: The Unheard Voices of Pediatric Patients" appears in the Spring 2018 Intima: A Journal of Narrative Medicine.

I Lost a Patient Last Week by Carolyn Welch

Carolyn Welch worked for many years as a pediatric intensive care nurse and currently works as a family nurse practitioner.  She has an MFA from the Bennington Writing Seminars.  Her poetry collection, The Garden of Fragile Being, is forthcoming from Finishing Line Press.  Her poem "Relapse" is in the Spring 2018 Intima: A Journal of Narrative Medicine

I lost a patient last week. This is not unexpected in the world of family practice. I have lost countless patients.  During most of my career in pediatric intensive care, however, I lost them dramatically. They departed with fight and drama, chest compressions and epinephrine, and intensity. This patient left quietly, succumbing to congestive heart failure.  He came in every week or two with waterlogged ankles and lungs when he forgot to take his meds.  He missed his wife. He lingered to talk. His going was like the tide shifting in Ron Lands' poem “Listen to the Ocean.” Some other shore was calling him.

There are moments when we notice the breath is like the ocean rising and falling or like Lands' “moonlight floating on the water.” My own daughter’s battle with schizophrenia is teaching me the tending of good days, the collecting of moments.

Last summer, as I watered the garden, a hummingbird flew close, dipped in and out of the spray—his thirst and my offering meeting there on a hot uneventful day in July. Diana calls on good days between relapses. Lands' patient or father or mother labors to breathe until reminded of the light and the water.  Waves bring what they have and take what they find.  Lands' voice eases his listener from one moment to the next.

My patient’s death leaves a gap in the schedule, an unfilled prescription, a message from his son. And we go on. This smallness of death is part of its tragedy to those of us working close to it, but also when it visits our lives. The room get cleaned, the bills arrive, the dogs whimper for their supper.  Some of us write poems in an effort to translate our experience and to tend to these moments of being.

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Carolyn Welch worked for many years as a pediatric intensive care nurse and currently works as a family nurse practitioner.  She has an MFA from the Bennington Writing Seminars.  Carolyn’s poetry and fiction have appeared in Gulf Coast, Poet Lore, Sundog, Tar River Poetry, Conduit, Connecticut River Review, High Desert Journal, The Southeast Review, Zone 3, The Minnesota Review, American Journal of Nursing and other literary journals. Her poetry collection, The Garden of Fragile Being, is forthcoming from Finishing Line Press.  Her poem "Relapse" is in the Spring 2018 Intima: A Journal of Narrative Medicine

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.

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.

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.

A Reflection on Hands—in Art, in Medicine by Pamela Hart

Pamela Hart is writer in residence at the Katonah Museum of Art where she teaches and manages the Museum’s Thinking Through the Arts program. Her poem "Dorothy's Hands" is in the Spring 2018 Intima: A Journal of Narrative Medicine

Field Notes on Hands: A Reflection by the writer of the poem "Dorothy's Hands" on Meagan Wu’s artwork titled "The Surgical Stage" in the Fall 2017 Intima

Hands are among the most expressive parts of the body, connected as they are with gestures of tenderness and violence. They caress and slap. They hold instruments, surgical or musical. They cradle weapons. Hands signal affection, distrust, anger.

They are conduits for ideas traveling from brain to language. They articulate the gap between thought and word. Before speech, hands gave shape to hunger and fear. They warn of danger. Handprints on cave walls are signatures or ancient algorithms linking past to future.

Hands mend wounds. Translucent hands hover like birds over an unseen patient, light radiating from the center of the image, while all the hands weave back and forth stitching skin to skin.

Heart line, head line, relationship line. Hands can be read like poems. Decipher the line on a palm to understand your life. What about memory lines. I think of my father’s hands struggling to attach dry fly to tippet. I remember stroking my mother’s veiny hands in the hospital as she died. My hands have cupped fireflies and embraced cigarettes. They plunged into the Sound on summer nights, pushing into dark water as plankton streamed tendrils of light through my fingers.

Hands give and take. I am here, say the hands. Look and listen.

The Surgical Stage by Meagan Wu. Fall 2017 Intima: A Journal of Narrative Medicine

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Pamela Hart is writer in residence at the Katonah Museum of Art where she teaches and manages the Museum’s Thinking Through the Arts program. Rowan Ricardo Phillips selected her book, Mothers Over Nangarhar, for the 2017 Kathryn A. Morton Prize; it will be published in 2019 by Sarabande Books. She was awarded a National Endowment for the Arts poetry fellowship. She received the Brian Turner Literary Arts prize and her poems have been published in the Southern Humanities Review, Bellevue Literary Review and elsewhere. Toadlily Press published her chapbook, The End of the Body. She is poetry editor for the Afghan Women’s Writing Project and for As You Were: The Military Review. Her poem "Dorothy's Hands" is in the Spring 2018 Intima: A Journal of Narrative Medicine

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.