I met Mister Softee the week before he died. He was a stroke patient who, in his most lucid moments, only ever wanted to eat the vanilla ice cream that was stored inside the unit fridge. I was a third-year medical student at the University of Rochester about to take a leave of absence. While my classmates were rallying to face the summer COVID wave of 2021, I was second-guessing my career in medicine. My rotation in the Palliative Care unit at Strong Memorial Hospital, which tended to see end-of-life patients, would be my last taste of medicine before I left.
Mister Softee had originally been admitted to Neurology in the aftermath of two strokes that had rendered him inarticulate and paralyzed on the right side of his face and upper torso. Not many months before, I had been on the stroke team myself, and had enjoyed it. It was so easy to become immersed in the rush of a stroke alert. There was the resident practically jumping on the patient’s bed, rushing through the motions of a neuro exam, asking the patient to stick out their tongue and wiggle their toes as the team hurried to get the patient into a scanner. Then came the discussion of whether to administer blood thinners to break up clots in the brain, which were only effective up to a few hours after a stroke. A patient’s future hinged on a series of split-second decisions; I couldn’t imagine living with the guilt of making the wrong choice, of cutting short an arc in their story.
For patients like Mr. S, however, strokes are not existential threats to their humanity. Instead, they’re dots in a constellation we call dying. In cases like these, the knee-jerk desire to treat and cure gives way to a slower conversation about how to best bring a sense of an ending to an entire life. This was how I, as the only junior on the Palliative Care team, came to be paged and consulted to evaluate Mr. S. for transfer to our unit and induction into hospice.
Throughout my rotation, I saw consults by myself and wrote orders that I couldn’t sign. This was an uncommonly large and vaguely illegal amount of responsibility for a student. It made me feel very grown-up, but inadequate in the face of dying patients, and even worse, their loved ones. Our duty to the dying was to provide comfort, but our duty to their aggrieved friends and family members was less straightforward than that. After all, they would live on with the memory not only of their loved one’s death, but also the memory of whether that death had been a good or a bad death, and the providers who were responsible.
I was 24-years-old at the time. What authority did I have to counsel someone in their final days, and adjudicate which wishes would lead to a good-enough ending? My education in academic medicine gave me contradicting answers to this question. In the hospital I was trained to pursue aggressive treatments to cure my patients at all costs, but in Palliative Care I was trained instead to focus entirely on comfort care. Patients had to die fighting or to die with dignity.
I arrived at the Neurology unit and stumbled into Mr. S.’s room, sleepy, my teeth sore after an hour of gorging on the Nutter Butters that had been left out for the fellows. Mr. S. registered my presence and, mouth agape, nodded steadily as I introduced myself. To my relief, there was no family at his bedside; the nurse told me that the son had stepped out for a McDonald’s run. This meant that I could return later with the attending physician leading the charge. Mr. S. didn’t want me to leave however, or at least, he started panting aggressively when I turned to go, which felt like a command to stop.
The man in front of me was in his early nineties and the dictionary definition of gaunt. A silver lion’s mane radiated from his head, waving along on some invisible electric field. His body was completely rigid from the strokes, yet he was sitting up, swaying, and pointedly looking at something: a plastic cup of water kept just out of reach on a tall medical cart. Though bound for Palliative Care, he was still in the Neurology unit, where a litigious fog haunted every medical decision. Wanting to provide but also afraid of getting in trouble, I ran out to ask his nurse if he could have liquids. I was told he had failed his swallow, meaning a speech therapist had determined that he would likely aspirate any liquid with a volume greater than one milliliter. I was warned to keep the water away from him, lest he grabbed at it and later perished from student-induced pneumonia.
But if water was what he wanted and he was bound for death anyway, why did it matter if he drank? In my mind, I weighed granting Mr. S. agency over his tenuous condition over denying it: a blurring of borders in patient care that an admission to Palliative Care would allow. But a fighting death was the only death the hospital would accept at this juncture in Mr. S.’s journey. I could merely swab him for comfort.
I returned to the room with a disposable oral care sponge on a stick and dipped it in the water. Mr. S. eagerly opened his mouth wide, or wider, since I didn’t think he could actually close it shut. Consequently, his oral mucosa was wildly, heartbreakingly dry. His lips were white and shingled with golden flakes and his tongue had the appearance of alligator hide. The stench of warm, rotten meat blasted my face with every stertorous breath. In lieu of dentures, the ulcers ravaging his gums gleamed with a violent, ivory brightness.
I only had a moment to appreciate the state of his oral dismay because once I dangled the water-soaked sponge close to him, Mr. S. brought down the full weight of his head to bear, latching on immediately and not letting go. He inhaled with an amazing force, as if drawing blood from my hand through a straw. I felt the pistons of his desire to drink and drink and drink rock the bottoms of my feet. It was all I could do to keep my balance and not panic over the thought of this man pulling together enough water molecules to form the lethal droplet that would end both his life and my nascent career.
Was it a career that I wanted? I had spent years imagining how my passage into the ennobled halls of medicine, and the inculcation of biomedical language into my mind, would allow me to make a difference in the lives of others. But now I was in a duel with a dying patient who could not make his desires known other than through the power of his body, a body that was bedbound, a body that needed an end to its story. What was my medical education missing? Where could I find a lexicon for the absurdity of this man’s struggle?
My mind wandered to literature. In the first year of medical school, the Division of Medical Humanities delivered a lecture to my class about a short story by William Carlos Williams, “The Use of Force.” It’s narrated by a physician conducting a house call for a little girl possibly sick with diphtheria. To make the diagnosis, the narrator must inspect her tonsils, but she refuses to open her mouth. Exasperated, he orders the father to restrain the daughter and uses a metal spoon—the girl has already crushed a wooden tongue depressor between her molars—to force her bleeding mouth open.
The story exposes the dark truth behind the often romanticized image of the neighborhood doctor traveling solo from door to door as a bastion of the local community: that doctors have always occupied a paternalistic role in making decisions about the bodies of patients, even against the patient’s expressed wishes. Hospitals, as derided as they are for their institutional rules and restrictions, have a system of checks and balances that regulate how bodies act toward each other, including the wielding of violence. I could not use any force on this adult human being beyond some gentle, annoyed tugging on the stick, but wasn’t depriving him of water just another form of violence? Perhaps the reason we were presented with Williams’ story was to suggest that the use of force by physicians on their patients has never truly gone away, only transformed into language: a language afraid of death.
Words and only words would have to do. “Sir,” I said, “if you let me dip the sponge back into the water, I can moisten your lips—.” But again, he had the stick in a powerful vise grip. The nurse’s words had reined in Mr. S.’s thirst, but they couldn’t stop him from keeping me at his bedside. Our bodies struggled against each other, and I was glad for it. Literature, I realize now, cannot give me the words to bestow agency onto my patients; often, literature can itself be a mechanism for doctors to further their hold, retrospectively, on their patients’ stories. I’ve always thought that writing gave me a reason to stay steeped in the pains of uncertainty. But what if my desire to escape into words was actually an attempt to overmaster uncertainty, and maybe even overmaster patients like Mr. S. who resisted my visions of what was best for them? Was there a way to tell his story while preserving his body’s power over mine?
I straddled my conscience and my fear of retribution; we went back and forth, him terrified to let me go, and me mortified at the thought of a nurse coming in to scold me. No providers came to check on him or on his neighbor across the curtain, however, which only further guilted me into staying. At some point, Mr. S. did relent, but only because he was dissatisfied with my puny sponge. What else could I provide for him? Under his yearning gaze, I cringed with inadequacy. I placed the water back on the cart and announced that I needed to get my attending. I bowed hastily and retreated from the unit with Mr. S.’s wails haunting every step. I kept my eyes glued to the floor, and when I passed by a man holding a small stack of Big Macs, I sped up my pace to a light jog.
Many patients, dying or not, suffer from the shame of “being a burden.” In Palliative Care, and in hospice in particular, soliciting goals of care can be difficult because needing and desiring feel anathema to the whole institution of death. To prepare for eternal sleep, people are encouraged to let go, and all some want to do is go, whether that means dying in the hospital or dying at home. For Mr. S., when my attending later told his family that he had only days to live, the answer was clear for us that comfort care in the hospital, where he could keep a hospital bed in a quieter unit with full-time nursing, was going to be the best setting for the end.
The difficulty comes when patients learn that dying or waiting to die is still living, and therefore the command for narrative lingers. Regularly, I saw patients who were given a few days to live continue to survive for weeks in the unit. For loved ones, this brought up the question of how to continue writing the narrative of the patient’s life when the word limit was unclear. If a patient could only communicate for brief periods throughout the day, how was one supposed to inhabit the interstices of unnarrated time?
Ironically, it was the desire to understand these non-narrative ways of being, not only in the days leading up to death but also in chronic illness and natural disasters, that first drove me toward creative writing. At the end of my first year of medical school, I learned that my best friend from high school had suddenly passed away, introducing existential uncertainty that unmoored me from the world of exams and the meaning in my life that I had long attributed to striving to become a doctor. And then, at the end of my second year, the pandemic robbed countless numbers of people of their lives and turned a future in healthcare into more of a nightmare than a dream. I deeply craved time to live slowly, to recompose these traumatic events, my illegible griefs, into new narratives that eschewed easy resolution and instead required the inverse capability often demanded by literature.
At the same time, as I began rotating in the hospital as a third-year, more and more was demanded of my body. The work of healthcare providers is an intensely embodied experience, even for doctors who are supposed to be the “brains” of care. For all its bureaucratic hegemony and opaque lexicon of physiology and pathology, healthcare leans on the movement of bodies. It depends on bodies standing for too long, sitting for too long, and working for too long. It needs bodies that don’t eat, drink, or pee enough. Although I didn’t serve as a covering provider until the beginning of my fourth-year, I witnessed the effects of this constant call for self-oblation on the workers around me. Burnout, moral injury, high rates of physician suicide; these phrases were so casually normalized that I almost became indifferent about how exhausted and how restricted my writing life would be after I graduated.
To an extent, providers willingly sacrifice their bodily autonomy for the sake of patient care, and that is why our country can simultaneously hail them as both “healthcare heroes” and cruel automatons who want to take advantage of us financially. From the provider side, illness robs people of agency, so when a patient makes a demand of our bodies, we feel compelled to freely hand ourselves over. But how much can healthcare workers provide while also nurturing and protecting the integrity of their corporeal selves? If Mr. S. needed to drink, to the point of being willing to end his story early for it, how could I completely turn away and deprive him of that? Was that a story that I could bear to carry in my body for the rest of my life?
For Mr. S., the inability to directly satisfy his needs or to express them to others thrust him into a crisis of mind and body that we were unequipped to solve. When I returned with my attending, his wailing had collapsed into outright agitation and intermittent, bone-chilling screams. The conversation with his son was short: Mr. S. required a sedative and would be transferred to Palliative Care that evening. My attending said that Mr. S. only had a few days to live, which was remarkable to me given how alive he was acting. His fluctuating levels of consciousness and confusion, however, meant that Mr. S. was delirious. By this, I don’t mean a psychological process of heightened emotions and excitation, but a type of organ failure that is common at the end of life. This “terminal delirium,” I later learned, was a telltale sign that further treatment was futile and even counterproductive, and that Mr. S.’s body was beginning to shut off. Medications would have to be restricted to benzodiazepines for agitation and opioids for pain, although Mr. S. would never be able to tell us where he hurt.
This became an issue after Mr. S. was transferred to our unit. The son, a burly, big-bearded man who towered over the rest of the staff, regularly asked for the drips to be temporarily discontinued. He planned to bring his daughter to say goodbye and wanted her to see grandpa as he used to be. This was impossible, of course, because Mr. S. would never return to his pre-stroke functioning, and he was still agitated even on sedation—and agitated shouting on the unit was very much against Palliative Care’s whole M.O. of a dignified, comfortable death.
It was unclear whether he would be coherent without medication. Was the medication easing Mr. S.’s restlessness, or causing it? When I asked my attending if we could simply explain the concept of delirium to the son, she barked back that delirium had too technical a definition, and it would only confuse him. In my mind, mutual understanding was less a matter of transparency than a matter of meaning-making, and I thought that delirium would help the son make sense, maybe years in the future, of his father’s death. But my attending didn’t deem the son capable of understanding the medical world we inhabited, and I didn’t deem myself worthy enough to defy her authority, so I stayed silent.
It didn’t help matters that the Palliative Care staff lacked trust in the son. When patients were dying, it was typical and secretly expected that loved ones would visit the hospital every day and even stay overnight on the couches beside the patient beds. If a loved one’s body wasn’t physically in the hospital, it was assumed that they weren’t grieving hard enough. Mr. S.’s son only came every-other afternoon, and when he brought the granddaughter, a puzzled but friendly high schooler, he just left the girl by herself to stare at Mr. S. as he slept through the morning.
We couldn’t tell if the son was busy with work, upset about his father dying, or upset with our care. He had suggested once, as another argument against medications, that he didn’t want his father to become an addict. I don’t think he quite accepted my attending’s assertion that at the end of life, being addicted to relief wasn’t the worst thing in the world. I couldn’t help but see a mirror image of my hesitations about leaving medicine. As I had struggled with giving Mr. S. water, his son struggled with the finite nature of his father’s narrative. It was family members who wanted to believe in a futurity and the possibility of risks, and it was us, the people from the hospital, who made calls for slowness and silence, as in the reading of a book.
Mr. S. baffled us all with his hunger. Instead of letting go of his desires, he doubled-down on them, shouting until his sweet-tooth was satiated. He was especially fixated on ice cream. I learned this when one afternoon I walked in on his son feeding him from the iconic, tiny Styrofoam cup. It would have been a tender sight if not for the chaotic state of the patient’s bed. The white blanket and sheets were thick with an impasto of tomato-based soups, strawberry and banana smoothies, chocolatey Ensure shakes, blue Gatorade, and yogurt. Wrappers for chips, cookies, and PB&J Uncrustables littered the floor among the barely-touched remains of food. I couldn’t help but laugh at Mr. S. opening his mouth like a toddler, pushing against the counter of a high chair for another bite of the frozen good stuff. He had white goop pooling in his gaping maw, with the sticky excess flowing freely down his biblically long beard and onto a soaked bib sliding down his chest.
The son appeared a little shy when I came in. I could tell he was glad to provide for his father. Most families relished any opportunity to feed their sick and dying—anything to keep them alive and warm and loved for just another moment. I’ll never forget walking by the room of another patient who was immobilized and dying from a malignant brain tumor, and catching sight of the light smile that passed over his otherwise still face as he stared out at the mini cocktail party his wife had organized. It was the warmest room I’d ever experienced in the hospital. His favorite jazz album spilled out from an overhead speaker, and there were balloons and yellow flowers everywhere. He died two days later.
There’s a fable in Leo Tolstoy’s short memoir, Confessions, where a traveler leaps into a well to evade a wild creature, only to encounter a famished dragon in the depths. Cornered by death above him and death below him, the man reaches for a shrub growing out of the wall and clings on for dear life. Exactly two mice are, for whatever reason, chewing the stem, so the traveler must quickly come to terms with his fate. Seeing exactly two drops of nectar on the shrub’s leaves, he embraces life one last time and licks them.
Even today, after I’ve returned to medical school as a writer, I still struggle to understand the relationship between death and the nectar that Tolstoy dangles before the traveler. Even in the moment before death, Tolstoy seems to suggest, the one time when we don’t need sustenance, we still crave the sweetness of life. Sugar is food, but is it really sustenance? In the Palliative Care unit, it sometimes appeared so. And yet, the despairing Tolstoy, seeing the nectar as a metaphor, questioned if this effort is even worth the last stand: “Those two drops of honey . . . my love for the family and for writing which I called art—are sweet for me no more.” At the end of my life, my career, what would my two drops be? There was medicine, which gave my life a font of purpose and ethical seriousness, and then there was writing, which gave me intellectual freedom and a means to cope with the limited frame of my life through language. But in the face of death, or Mr. S.’s death, what both pursuits offered me was not sweet resolution or catharsis, only a caesura in time in which I could hold myself against my own mortality and not disappear.
The day when Mr. S. stopped eating ice cream was the day I knew it was his time to disappear.
It was springtime, and Rochester was between Covid waves. I threw off my hospital scrubs and pulled on my dress pants, brittle from disuse, and staggered into the frigid dawn. As I crossed the bridge over the Genesee River, my pager went off in my backpack. This was usually a heart-stopping sound, but I already knew whom it was for. The head nurse practitioner had promised me the day before that since I’d never seen a “freshly” dead body (the cadavers in the anatomy lab didn’t count), she would notify me the next time there was a pronouncement. Her message struck me as oddly Joycean: PATIENT DYING COME TO BEDSIDE. In that moment, I learned how words move us. I went from hoofing it to a gallop.
Mr. S.’s body had radically transformed overnight. His skin had become yellow and plasticine in texture. No longer contorted by the rigidity of the strokes, his limbs and torso could be arranged in the pose of rest, now held together instead by the more ductile rigidity of rigor mortis. His face had been shaved and cleaned. All the rubbish had been cleared away, and his bedding had been changed. I was sad that the son and the granddaughter weren’t there, but I was reassured that they had been contacted. The nurse practitioner guided me through the routine, first by confirming the patient’s identity, then by shining a light in the eyes to assess the pupillary light reflex, followed by feeling for a carotid pulse and auscultating heart and lung sounds for a minute each.
I feared looking like a gawky fool, waiting for the hands to finish their brief rotation around the clockface, waiting for Mr. S.’s hollow, unmoving instrument to erupt into music. Yet, when I placed the diaphragm of my stethoscope against his opened chest, I was surprised by the sound of notes. A lot of notes: the gurgles, moans, and sustained bourdons of ice cream and air being squeezed through the gut. The gastrointestinal system, having its own independent branch of nerves, was continuing its peristaltic motions after death, trying to nourish a body no longer in need of relief from hunger.
As a writer having returned to medical school, I sit down at my keyboard every morning trying and failing to replicate for my reader what the dust of Mr. S.’s story made me feel: nourished after the end. After I listened for a long while, I lifted myself from the colonic symphony and finally allowed myself to be breathless in the silence of the hospital. This was how Mr. S. disappeared, his mouth no longer dried and crusty but forever open, his longing for nectar icebound. I remained behind, having survived his ending, unsure of whether a career of endings, real or fictional, one after another, would ever be enough.
***
Rumpus original art by Lauren Kaelin
