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.

.

.

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.

---

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.

---

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.

How a poem entitled “All the Girls Were There, and Gorgeous” helps us reflect on illness, morality and memories by Andrew Taylor-Troutman

Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

A year ago, a half-dozen older women gathered in a church fellowship hall. The coffee percolated as copies of “All the Girls Were There, and Gorgeous,” a poem by Carlene Kucharczyk in the Spring 2017 issue of Intima, were passed around our circle of chairs. As facilitator of this narrative healthcare workshop, I read the poem out loud. The gas logs hummed for a moment in the silent room. I was about to launch into questions specific to Kucharczyk’s remarkable poem when this participant spoke, quietly yet clearly: “Do you think it would be easier to have Alzheimer’s or ALS?”

A year later, her question came back to me and I wrote my little story, “Cups and Such,” not as an answer, but to continue the conversation.

Her question proposes a binary. In some ways, “Cups and Such” is the mirror opposite of Kucharczyk’s poem – a woman awake in her life, though / she doesn’t know it compared to a man fully aware of the betrayal by his body. But both poem and story deal with the same haunting theme: What is our relationship to our past? Memories flit and flash in and out of our consciousness like fireflies. Is hindsight really 20-20? Or, is it that we are continually revising our story to make meaning? “Revision” means to look again; etymologically, so does “respect.”

Skilled poets, like Kucharczyk, write with clarity yet focused ambiguity, thereby asking readers to look again and again for interpretations. We read and continue the conversation. A year later, I remember how the workshop participants were divided as to the moral character of the narrator: We do not like to visit her, / I hope she does not know. Was the narrator a “good granddaughter” or not? What is expected of us when a family member has a terminal disease? Could it be that the way the sick perceive us changes, say, from a bright shining face to the appearance of a moon? Is that cold and distant? Or, could the transformation be a natural reflection of a previous light?

And I still wonder, in Kucharczyk’s words, about the part that is elsewhere. Time is not linear. Perhaps there are moments, even in pain (whether physical or emotional or spiritual), when all the girls are gorgeous, when all is whole again and saved.

---

Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. His recent essays have been published online at Mockingbird (http://www.mbird.com) and his poetry at Bearings (https://collegevilleinstitute.org/bearings). He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. He and his wife have three children. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

Dinner, Revelations and Narrative Medicine: Tales told by Intima Spring 2017 by poet Wendy French

This is a blog about Intima and narrative medicine in general and all that we can read and absorb from this excellent online journal. Every issue grabs my attention for the poetry, articles and the blogs that respond to other people’s work.  

Wendy French is a poet, whose latest collection of poems is "Thinks Itself A Hawk" (Hippocrates, 2016). Her collaboration with Jane Kirwan resulted in the book "Born in the NHS" (Hippocrates, 2013). She won the Hippocrates Poetry and Medicine prize for the NHS section in 2010 and was awarded second prize in 2011. She has worked for the past twenty years in healthcare settings. Her poem "Exchange" appears in the Spring 2017 Intima.

My poem "Exchange" was written after my son came home from working in the Far East. He brought with him a girlfriend who had also been working with him for the British Council. Poom was Thai. We had never met before and they arrived in the evening. She was exhausted from the long flight. I had prepared a meal and over supper, a nurturing and nourishing time and good time to talk with new and old friends. She told me that her father had died and she was still very sad.  We had candles on the table but we lit another one for her father and placed it in an important position near the flowers that seem to symbolize new growth, new seasons. 

Then Poom started to tell us that she had had Stevens-Johnson Syndrome, a syndrome I had never heard of. But as she told us her story another narrative emerged, the emotional need to now pass on the story. This for me is what narrative medicine is all about. It’s telling our stories to a health professional who can understand what is going on for us emotionally, intellectually and physically. Poom felt, at this supper in a country she didn’t know, not long after her father’s death and this dreadful illness, that she needed to talk about it and try and rid the experience from her mind in a strange country. This was her narrative being told right now.  

I was very struck by the wisdom in Vivian Lam’s Crossroad's essay "This Game We Play Called Dying."  Even dying has a narrative for each individual although by the time we are in the clutches of death we may be too ill, too sick, to tell our story to anyone. So it is the people who care for us who have to interpret our story at this stage of our lives. Hence the need, as Vivian Lam says, to be able to know whether or not the dying person wants someone with him/her now or whether she/he’d rather take the final steps alone. Therefore it is the responsibility (and I mean responsibility) of the nearest person to the dying to have found out this part of the narrative while it is possible to do so. This may be the health professional who cares and treats the dying with compassion. Dying is the final and may be the most important part of the narrative.   

---

Wendy French is a poet, whose latest collection of poems is Thinks Itself A Hawk (Hippocrates, 2016). Her collaboration with Jane Kirwan resulted in the book Born in the NHS (Hippocrates, 2013). She won the Hippocrates Poetry and Medicine prize for the NHS section in 2010 and was awarded second prize in 2011. She has worked for the past twenty years in healthcare settings. She was Poet in Residence at the UCH Macmillan Centre from April 2015-2016 and this year will be working with patients/caregivers on writing memoirs. She is one of six poets invited to Bucharest to work with MA students on translations of their novels into English. She currently is writing poems to celebrate Waterloo Bridge.