Abstract
I spent a total of nine Mondays with the palliative care team at New York–Presbyterian Hospital. In the hospital I saw the ways that lives are transposed and relocated, juxtaposing everyday routines with crises. Clinicians, who grow familiar with these scenes, are alien to this place precisely because they fit into it. They are the ones who are still within their lives, and there is a divide: between those who are here interrupted and those going about their daily work. The team was charged with reaching across this chasm. And in the moments they took, lingering just long enough over the list to mourn a death or to celebrate a minor victory, they moved the names from the realm of bodies to the realm of persons. Then they rose, with the mixture of lightness and gravity befitting their task.
***
“Squeeze my hand each time you hear the letter A.
H, A, V, E, A.…”
The man was intermittently conscious, able to express basic desires but often losing track of his thoughts or speaking and gesturing incoherently. His wife said that he spends most of his days asleep. The physician wet his mouth with a sponge, smoothed balm over his cracked lips. He was there to discern, with the man's wife, whether continued sedation was desirable. When they moved to step outside, the man seemed to say that he didn't want to be left alone. Awkwardly, I stood near the head of the bed, first talking until he dozed and then gazing out the window at the Hudson. It was blunted, sky to water, with pale shades of gray.
I experience a similar discomfort around babies. Not exactly a discomfort, but a sense of not knowing what to say, so I just stand there, quietly. It was strange to be so close to a body that was so close to itself, not obscured by layers of personality and consciousness. It was demonstrating its processes in spasms and shifts. It felt like an adoration of sorts, a vigil; as if it might have been enough just to witness his continued presence in the world.
***
I ride the subway an average of two times a day, once every eight waking hours. I go for groceries maybe once every week and a half, set off by the roughly one hour and six minutes I spend eating each day, multiplied by seven to give seven point seven hours each week. We hang our lives on repetition; on alarm-clocks, sunsets, kisses goodbye. Periodic beings, we circle back in intervals to the needs of our bodies and the habits of our minds.
Before we met her I knew that she had vomited seven times in the last twenty-four hours; an even distribution would mean that was once every three hours and twenty-four minutes. Her tanned skin stretched taut over her face, and from the folds of skin shone piercing blue eyes. She could not speak. The tracheotomy tube extruding from her neck curled up and over her shoulder. Her husband stood at her side, holding a plastic bin against her collarbone. Cachectic, a new word in my vocabulary, rose unbidden in my brain as I saw her emaciated shoulders and forearms, her wrists loosely encircled by hospital bands. I wondered, later, how long it had been since the woman had counted an interval by anything but the demands of her body.
Three days in the surgical ICU, four doctors per day; twelve doctor-days in seventy-two hours. She could not speak but her eyes burned with a question I didn't understand. She shrugged, fragile and embarrassed. The attending surgeon blew in. The room inverted for a moment; he moved to her side and furrowed his brow, interrogating his fellow over her head. The surgeon pushed aside the woman's coverings to inspect her ports; when he saw that she had soiled herself he loudly called out for a nurse to come clean her up. He roughly palpated a bag of viscous bile and fluid, kept asking about her numbers and assay results, the fellow standing back, barely over the threshold. He was gone as soon as he had come. Her husband explained, to the doctor who remained, that she was sorry she wasn't doing better.
After the surgeon left, the patient, her husband, and the room calmed. Everyone took a breath. The pain interview, briefly interrupted, began again; the patient and her husband lowered their shoulders and remembered to breathe. The physician leaned gently on the bedrail, asked his questions, gently. The difference was in the time between his statements, the second or two it took to meet the woman's eyes.
How many interactions happen in a small hospital like this, two city blocks of beds and monitors? There seems to be a calculus that defies integration, the fleeting interactions that occur in the midst of treatments, seconds to minutes to hours filled with one type of vigilance or another. Of all the questions that could be asked of caretakers by their silent patients, the one with which I'm most often left is not What are you going to do? but How will it be done?
***
We visited a man and his mother after a procedure. The doctor asked the man what the surgeon's name had been. He remembered, and then smiled, tugging at the front of his shirt. Sounds like shatnez, he said, explaining an Orthodox word—“like kosher for material.”
Shatnez: a mixture of wool and linen, forbidden as clothing in Torah law. You shall keep my statutes, it is written. You shall not let your cattle breed with a different kind; you shall not sow your field with two kinds of seed; nor shall there come upon you a garment made of two kinds of stuff.
I find myself made of mingled stuff.
***
I wanted to write, this week, on the personal metaphysics that we all carry around, of hopes and doubt, grief and fruition, and the way the hospital heightens our sense, in turns, of being consoled and condemned. In the morning meeting we spoke about a family who wanted to resuscitate their loved one in the case of a crisis, despite the potential for severe brain damage. They were waiting for a miracle. This decision seemed to signify something that I recognized, all at once, in myself: We will wait for God to act, we seem to say, but we aren't confident he can do it without our help.
But these topics kept spiraling out of my grasp, exceeding me. Instead of miracles I was left, again and again, with tension: the tension of standing at the bedside, of hoping for the impossible. The difficulty of holding two things in consciousness at once: our belief in something that endures, and our constant confrontation with that which does not. One morning meeting, we spoke of a daughter of one of the patients who had stopped staying at home; she would spend time instead rotating among friends' houses. Later in the day, the wife of a patient we had seen earlier was standing in the hallway and saw us approach. She didn't make eye contact and moved, almost frantically, down the hall. She ducked into a restroom just before we reached her.
While shadowing with a chaplain, we stopped for a moment after a long interaction with a patient, separating out in our minds what was “ours” and what was “hers.” Her diction, the lighting of the room, the pace of her conversation—all these reached into both of us, betraying our selves as permeable, our boundaries as fluid. And in the neuro ICU, where a high school senior who had been thrown from the back of a pickup truck was now slowly climbing back from the depths of a coma, a football teammate stood mute at his side, looking upon his body breathing through a tube. Thrown into tensions, what can we do but live in them? We run, and we can't tear ourselves away.
***
I approach medicine with a sense of awe and trepidation, for I sense that despite all we do to reduce the body to a mere thing among things, the human body is different, somehow inviolable, unique to anything else in our experience. We are some inseparable mingling of matter and self, inseparable save for in death. And then?
The lead physician of the palliative care team emphasized the importance of setting goals for care, and for matching treatment to those goals. A patient's own understanding of the meaning of a “cure” should inform our choices and interactions. Perhaps the best one can do is to serve as a good interpreter, bridging the patient and his or her desires to what true help exists. An interpreter must access the vast current of communication, of which speech is but the glinting surface. The work is about being radically available, employing one's subjectivity on another's behalf.
Pain medication and sedation often go hand in hand. So do chemotherapy and mouth sores, hospital beds and sleepless nights. What can medicine offer but shatnez? Yet we give our best. We again saw the patient from weeks ago—the one with the tracheotomy tube, the nausea, the liver transplant. She still couldn't talk, and sat wracked with frustration in her effort to heal.
As palliative caregivers, these clinicians are doing an ancient work, something that harkens to the beginning. Perhaps there is a value in remembering all these beginnings; the moments of hesitation to hear a voice, the responses to need that have been repeated through time. The tools have changed but the imperative persists: simply to witness bits of the mystery at the core of our experience. There is a beauty in this work, despite its difficulty. Each patient encounter reveals a universal simplicity.
***
Late on my last day we entered the sanctuary of a Buddhist woman with breast cancer. Her daughter stood by her side, and a friend read them both a letter. We paused, moved collectively by the power of words spoken aloud. Here was a patient who welcomed the doctors into her space. The beauty of her room, the simplicity and holy quiet, was tranquil and still. She vomited and sat on the bed without shame or apology. I wondered if these were the fruits of some long, internal preparation. She was not alone: that room was full of dear ones.
A woman I saw last week with a chaplain was frightened. Her life before her illness had nothing to do with her life now. She was waiting—for discharge from the hospital, for her unnamed fiancé, for a cure. The anxiety of not knowing what would happen kept her awake; she was restless over money, her health, and the course of the disease. She tried to meditate on sailing and was unable to access the memories she loved. She had not one unburdened thought. Her suffering was the waiting—but then, did not the other woman wait, as well?
And I: attached to things impermanent, weeds among the wheat; to my own self-cherishing thoughts. Their bodies speak to me even now: such pain, such love. I am beloved though I am mixed; I am dear although I am not pure. Is Ephraim my dear son? says the Lord. Is he my darling child? For as often as I speak against him, I do remember him still.