Great books can guide us in every day life, and I found it fitting that Dean Schillinger, MD and I both invoke works of literature to describe the experience of realigning our values with those of our patients. In his essay, “The Quixotic Pursuit of Quality,” (Spring 2015 Intima) Dr. Schillinger compares himself and his patient, Mr. Q, to Quixote and Sancho Panzo from Miguel de Cervantes Saavedra’s Don Quixote. With only misplaced medication lists, no-show appointments, and a stubbornly elevated hemoglobin A1c to show for his repeated efforts to help Mr. Q better manage his many comorbidities, Dr. Schillinger’s frustration melts away when Mr. Q unexpectedly gives him a massage. From then on, “the duel was over.” There would be no more tilting at windmills.
Read moreWhen Cure and Language are Inadequate, What Remains? Reflecting on bearing witness by Rachel Cicoria
Recalling the loss of her husband, Mike, Dianne Avey’s essay“Morning Light” (Spring 2023 Intima) reaches back a decade to a quiet September morning on Anderson Island in Washington. Avey, a writer and nurse practitioner, draws us, however, not to the moment of her husband’s death but to a “place of quiet morning light.” This liminal stasis exceeds cure and speech and, in my view, renders the “human” (as defined by technical and linguistic competencies) indeterminate. Yet, beyond our abilities to fix and to say, there remains “the only thing we can ever do”: being present and bearing witness.
Read moreScripting Death: When Words Fail – In Conversation with Liana Meffert’s “Death is Usually an Easy Diagnosis” by Paula Holmes-Rodman
In reading Liana Meffert’s “Death is Usually an Easy Diagnosis,” I was intrigued by her reflections on the learning and limitation of choreographed roles and scripted dialogue in pronouncing death and informing bereaved families.
Read moreThe Chance to Say Goodbye... or Not: Thoughts about being prepared—or surprised— by death by end-of-life doula Virginia Chang
An end-of-life doula reflects on their experiences with dying patients and concludes by offering three life lessons.
Read moreExploring End-of-Life themes in "Nay Nay's Rebirth," a short story by Sara Lynne Wright
A retired surgeon reflects on a short story published in this journal—and in doing so, also contemplates how a comfortable and humane death can be fulfilled at the end of life.
Read moreWhat the Dying Need by Rachel Prince
Shortly after reading Vigil, I stumbled upon Sara Baker’s poem, “What Do the Dying Want?” (Spring 2015). In this work, Baker explores the titular question by wondering how healthcare professionals, hospice workers, or even caregivers and family members can properly address the needs of the dying – is the correct way through words and stories, reminiscing, music, meaningful touch, or just holding space and being present?
Read moreWays of Knowing (and Not Knowing) When the Prognosis is Terminal by writer PK Kennedy
"Right in here, remove your clothes. Underwear and bra can stay on but put the robe on so it's open in the back, not the front, okay?"
The words are coming at me in a torrent; I can’t understand any of them, but I know the drill.
I throw my stuff in a bag, take a deep breath, and open the door to the inpatient surgical waiting room. It smells like alcohol and ice and has no memories I can sense. Am I the first person that’s ever come here?
“You’re here for the lumbar?”
I cut her off before she could say puncture. "Yes."
Read moreMothers and Daughters: A Reflection on Cancer, Caring and Seeing the Whole Picture by poet Kathryn Paul
—After ‘Macroscopic” by Adela Wu (Spring 2021 Intima)
My mother and I were not close. I knew she wanted us to be, but I couldn’t do it her way. For most of my adult life, I kept my distance, emotionally and physically. We lived on opposite sides of the continent. In her 80’s, the creeping dementia my mother never discussed was overtaken by a cruel and much more terrifying diagnosis: Stage IV ovarian cancer.
Aided by her cancer-free twin sister, Mom endured multiple surgeries and two lengthy and debilitating rounds of chemo. Each time, her cancer came roaring back within weeks. Her surgeon suggested an experimental Round Three. Mercifully, her oncologist suggested hospice at home instead.
During the first year of Mom’s illness, I was trapped by my own cancer treatment, unable to participate in her care. I called daily, spoke with her, spoke with my aunt, asked about her pain, her “tummy trouble,” her ascites, and her white count. I took notes and dictated the questions to ask at her next appointment.
As soon as my doctors cleared me to visit her, I did. I was always on the verge of moving in with her, but never quite needed to do so. I flew back and forth. The more debilitated she became—by her cancer and her dementia—the more often I visited.
Adela Wu’s Studio Art piece “Macroscopic” simply and eloquently captures the changes in how I experienced my mother during those last months and weeks. The simplest things gave her joy: A small dish of ice cream. A pain-free nap on the down-stuffed cushions of her couch. Cuddles with her cats. A bird visiting the feeder outside her window.
Even as her disease spread through her body, even as she faded, my mom seemed to crystallize. She became, ultimately, the Essence of herself. And—just at the end—I finally saw her.
Kathryn Paul
Photo by Andrew Givhan
Kathryn Paul (Kathy) is a survivor of many things, including cancer and downsizing. Her poems have appeared in Rogue Agent, Hospital Drive, The Ekphrastic Review, Lunch Ticket, Stirring: A Literary Collection, Pictures of Poets and Poets Unite! The LiTFUSE @10 Anthology. Her poem “Dementia Waltz” appears in the Spring 2021 Intima.
Life in the Gaps: How Illness Transforms Our Sense of Time by Renata Louwers
It was in those gaps, between our lived experience—the crushing uncertainty about how long my husband would live, the daily reality of his intolerable pain, and the abrupt shift from a life of joyful ease to one spent contemplating death—and the oncology profession’s standards of care, first-line treatments, and numeric pain scales that my frustration festered.
Read moreGiving: What Real Generosity Looks Like in Healthcare by pediatrician Lane Robson
Giving defines us as individuals. Patients and healthcare professionals are obliged to share time together. Gifts of shared humanity transcend personal and professional obligations. These gifts might be hoped for but are neither expected nor routine.
The Practice of Prolonging Death, a reflection by palliative care physician Chris Schifeling
“Would we rather die too soon or too late?”
The taboo of talking about death combined with a faith in the insomnia of medical technology leads many to err far on the side of dying too late.
Read moreAre We Still Ourselves? By Marie-Elisabeth Lei Holm
Facing death led Kalanithi to grasp the flow of time in an entirely different way. From being a steady currency–a predictable resource of skill-building and career advancement–it dawned on him that time does not always follow a linear path of progress.
Read moreSuffering’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?
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.
© 2020 Intima: A Journal of Narrative Medicine