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?”

---

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.

---

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.

---

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.

.

.

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

---

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.

---

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.