by Sunita Puri
“What is a good day for you, Mr. Tan?” I asked.
A day with them, he wrote back.
“What gets in the way during a good day? What can make it turn bad?” I asked, feeling around in my mouth for the right string of words.
Dry mouth. Or too weak to get up.
“So I think we need to make sure that no matter what is going on with you, that you are getting the gel for your mouth as often as you need it,” I said. “I also think that on good days we need to make sure physical therapy is working with you.”
He gave me a thumbs-up sign. “It’s really important to me that we get you feeling the best we can.” Another thumbs-up.
“I didn’t mean to scare you or your family earlier. I’m really sorry about that.” I felt my face burn with shame.
He smiled his biggest, most lopsided grin I had yet seen, and shook his head.
It’s OK. It is important to discuss.
As he wrote and erased, it occurred to me that to anyone passing by Mr. Tan’s room, it might have sounded like I was talking to myself. In our exchange of words, mine spoken and his written, I felt myself relying on language in a new way, in a situation where the medicine I was learning to practice collided with the innermost worlds of the patients I cared for—the places I could not find with needles or ultrasounds or stethoscopes.
* * *
As the remaining days of my rotation passed, Mr. Tan slowly improved. His infection resolved and his bleeding stopped. He got well enough to leave the ICU, and regained enough strength to begin physical therapy. He made it to a nursing home. I remember high-fiving Noelle the day before he left. She was thrilled that the caseworker had gotten him into a specific nursing home just south of San Francisco, a place where he could see the ocean from the foyer. I was grateful for being wrong, though I knew that he remained as prone as ever to a sudden catastrophe. He would later thank me for having the courage to bring up a delicate subject with him and his family, for motivating him to think about how to plan for a worst-case scenario.
During my intern year, I fretted about whether I was smart enough to make adept diagnoses based on a patient’s description of their symptoms and a careful physical examination. I worried about misdiagnosing, about not knowing how to recognize and treat every illness I’d encounter. But focusing only on diagnosing and treating my patients’ problems continued to feel like an incomplete fulfillment of my duty. I began to sense my own natural inclination toward understanding what I’d think of as the “bigger picture” for patients, especially those like Mr. Tan, who needed not only medications and CT scans but thoughtful conversations about how his diagnoses might suddenly change his life. I wanted to use my training to prolong life without sacrificing the quality of life a patient valued. Helping someone to live well, I realized, was just as important as helping them to live.
I couldn’t have known then that in two years I would sit next to Mr. Tan in a large gymnasium at UC Davis, bringing along my camera and capturing moments from Noelle’s graduation that I’d later print and give to her: Noelle in her graduation cap and gown. Noelle playfully placing her graduation cap on her father’s head. Mr. Tan and his wife looking on as an officiant called out Noelle’s name and she walked toward the large podium. Mr. Tan’s determination to be at graduation had propelled him through many additional hospital stays for everything from a malfunctioning feeding tube to an infectious diarrhea. What role had something within or beyond him played in his defiance of the physical constraints imposed by his flesh? After the ceremony, as I watched him embrace his daughter under the relentless Central Valley sun, I thought of my mother’s words, of the idea that doctors knew only so much about the fate of a human body, that God knew more about the destiny of a human spirit.
Before Mr. Tan left the hospital that December, he wrote me another note, one that I kept in the pocket of my white coat and then in my wallet, and then in the shoebox full of letters and cards and messages on scraps that have meant something to me over the years. In shaky handwriting, he’d written a clear message, one that taught me about grit and resolve, love and loyalty.
I told you I would get out of here!
Three
DECISIONS
When I was a toddler and my mother was in her residency training, the sky was dark when she left our apartment early in the morning and dark when she returned late in the evening, hours after my father had fed and bathed me. She spent the hours between two dark skies under intense fluorescent lights in the operating room and the intensive care unit.
Using medications and machines, she took patients to the brink of death so that, with the aid of surgery, they could live a longer and better life. If surgery began to overwhelm a patient’s heart or lungs, my mother would inform the surgeon immediately, identify the source of the problem, and help decide whether continuing was safe. She saw people through open-heart surgeries, hip replacements, liver transplants, appendectomies, and removal of cancer blocking the intestines. Patients this sick were inherently unpredictable; my mother would leave their sides only in the late evening, when she was certain that she had done everything she could to ensure that she would see them alive hours later, on the next dark morning.
Though it became her life’s work, anesthesiology hadn’t initially been her calling. She had assumed that she, like most Indian immigrant physicians at the time, would begin a residency in family medicine after completing her internship. Family physicians were in demand in the United States then, and it was relatively easy for a foreign-trained physician to earn a spot in a family medicine residency program. But her plans changed entirely after a colleague named Dr. Patel told her to consider a less conventional choice. “I remember him and that conversation very clearly,” she told me when I was in high school and asked her what drew her to anesthesiology. Toward the end of a quick lunch in the hospital cafeteria, Dr. Patel suggested that she look into a residency in anesthesiology. The field of anesthesia was rapidly growing, and well-trained anesthesiologists were badly needed all over the country. It would pay more, with the added benefits of better hours and less paperwork. Family medicine was a tried and true path, Dr. Patel acknowledged when my mother expressed concern over how few interns chose anesthesiology. But he himself wished he’d taken a risk, been open to a new and growing field.
Aside from expressing her one concern, my mother didn’t question Dr. Patel, nor did she wonder whether she might enjoy being an anesthesiologist. “I didn’t think so much about it,” she told me when I asked how she made such a big decision based solely on a passing suggestion of an acquaintance. “He told me it was a new and exciting field, that it would be good money. And I just did it. That’s what your father and I had to do. We had to make decisions, not think too much about them.” And just like that, my mother applied for a residency in anesthesiology. When she received her acceptance letter from the University of Louisville, she and my father had to look up Louisville on a map of the United States. They shrugged, deciding that living there must be part of God’s plan for them.
“Now looking back on it, I guess you can say I took a big risk,” my mother eventually conceded when I insisted that her decision making was rather impulsive compared with the more reasoned, deliberate approach I’d seen her use. “But I can’t explain it. Something told me it was the right decision to make, so I didn’t think too much and I just did it.”
In September of my second year of residency, I, too, had to consider what type of doctor I would be. Did I want to practice general internal medicine or apply for further training—called a fellowship—in a more specialized field of medicine? Many of my co-residents were applying for fellowships in fields like cardiology or gastroenterology. These added years of training would let them specialize in treating diseases of one bodily system, be it the heart and circulatory system or the gastrointestinal tract or the lungs. I’d seriously considered fellowship training in pulmonary and critical care m
edicine, a branch of internal medicine focused on the care of patients in the ICU and patients with lung disease; I’d leave fellowship training able to intubate patients and ease them off breathing machines, monitor their heart function with invasive devices, and give them powerful pain medications and sedatives to make their time in the ICU bearable. I’d be able to do many of the procedures my mother did, though I’d take care of patients in the ICU rather than the operating room.
Right around that time, I began a four-week rotation in the intensive care unit, and my mother’s residency routine became my own. My jarring alarm clock reliably screeched at 5:15 a.m. I quickly brushed my teeth, twisted my hair into a high bun, and pulled on my thin, sky-blue scrubs before racing to the shuttle stop, my breath a series of white puffs against the dark courtyard and predawn sky. The same dark sky and empty courtyard greeted me when I returned late each evening, eager to wash off the day with a hot shower. In between my shuttle rides, I’d spend my days under the intense fluorescent lights of the ICU, where desperately ill patients lay in individual rooms behind sliding glass doors and gray-purple curtains. Throughout my four weeks there, I’d learn and practice the same procedures my mother had done multiple times a day for almost thirty years.
By that point in residency, I’d treated pneumonias and bladder infections in elderly patients, learned to distinguish between shortness of breath caused by emphysema and that caused by a heart attack, recognized and responded immediately to emergencies without panicking as I imagined I would. But the most gratifying moments were the ones I’d spent with patients like Mr. Tan, and Donna, the ones whose situations weren’t easily fixed, whose chronic diseases distorted their daily lives and shrank the perimeters of their worlds. My role in their care seemed far more expansive than making and treating a diagnosis. I was interested in questions with no easy answers. I was drawn to medicine’s gray areas. When I closed my eyes and imagined the type of medicine that would bring me happiness and fulfillment, what I returned to again and again was the practice of palliative medicine. I didn’t quite understand why I’d find fulfillment caring for patients I knew I would lose soon after I met them. Neither did my parents.
“What is that?” my mother asked when I told her I might apply for training in palliative medicine. I’d come home for a weekend toward the end of my intern year, and my parents and I sat at our kitchen table, drinking tea and nibbling on almond cookies. When I explained that the field focused on easing the suffering of patients with serious, usually incurable illness, my mother scoffed. “Don’t all doctors help patients suffer less? Isn’t that what we are all supposed to do?”
My parents weren’t alone in their confusion. Most people, including medical professionals, don’t know much about palliative care or hospice or the difference between the two. Many assume that hospice is a place that cares for patients in the last days to hours of life; in reality, hospice teams most often care for patients in their own homes, easing their physical and emotional suffering in the last six months of their lives, usually when treatments such as chemotherapy or dialysis have been discontinued. As the medical world began to see that more Americans enjoyed improved symptom control and quality of life on hospice care, many wondered if patients with a serious illness would benefit from a similar service well before the last six months of their lives. And this became the focus of palliative medicine: attending to a patient’s quality of life shortly after the diagnosis of a serious illness rather than in the last months of life. This meant that patients could simultaneously get palliative care and treatment of an underlying disease—be it cancer or heart disease or kidney failure. Although hospitals began offering palliative care services during the 1980s, it was recognized as a medical subspecialty by the American Board of Medical Specialties only in 2006, five years before my conversation with my parents. I’d be a young doctor in a young specialty that was still articulating its identity, which I found exciting even as my parents urged me to apply for a field that was more respected and established. I chuckled internally as I listened to the repetitive hesitation of two souls who had taken far greater risks and endured far more daunting unknowns than this one.
“That’s not what I’ve always seen,” I said, reminding my mother of the many times she’d wondered aloud why my attendings insisted on providing aggressive treatments for patients who were close to death.
“Why not do something more useful, like cardiology or intensive care? You can use those skills all around the world, but you can’t do that with this . . . what is it called again? This field you are interested in?” she said.
“Pall-ee-uh-tive care, Mama,” I said, annoyed.
“That’s a strange word. You really want to care only for dying patients? Is that really why you became a doctor?” My father nodded as she spoke. “At that point, isn’t it between the patient and God?” he asked. “What are you supposed to do for them if you can’t fix their problem?”
I exhaled hotly and pushed my cup of tea away, shaking my head and crossing my arms across my chest. My sudden anger surprised me. The tea spilled onto the table, and my dad admonished me. “Hey, you watch it!” he said sternly.
“I don’t think you understand. I was on the verge of totally quitting medicine and then I did the palliative elective. That’s pretty much what kept me from throwing in the towel.” I clenched my jaw.
Our old tensions boiled. There had been other fields that caught my eye—anthropology, literature, social work—but I knew it had always been expected that I would become a doctor. I’d gone to medical school on what I thought were my own terms, though the boundary between my sense of obligation to fulfill my parents’ expectations and my own vision for my life had always been blurry.
“But this field is so depressing,” my mother continued. “Don’t you think it will just bring you down? At least in other fields you can actually help people.”
“That’s what you don’t get! It actually isn’t depressing. It’s pretty amazing to get someone’s pain under control or to help explain to them the reality of what’s going on with them. You’re an anesthesiologist—you know all about helping get people comfortable,” I said, my voice pressured, eyes narrowed. My mother avoided my gaze.
“Look, you asked us for our opinion. If you don’t want to listen, then don’t ask,” my father said, waving his hand and getting up to wash his empty teacup.
I slammed my hand on the table. “I actually didn’t ask! I was telling you! I’m the one who’s had to do all of this work, so why can’t you just support this decision?”
My father returned to the table and hovered above me. He spoke quietly but firmly. “You wouldn’t have been able to do this work if we hadn’t worked so hard ourselves. Show some respect. Come on, Rita, let’s go for a walk.” My mother got up and left with him.
I’d always chased my parents’ approval, and their skepticism about my potential subspecialty unsettled me. They made important decisions with the intense practicality and foresight they needed to survive the poverty of their childhoods and weather the rocky, unanticipated transitions of immigrant life. And their decisions were almost always good ones, a curious mix of risk taking and adherence to convention. I trusted their judgment more than my own. Their agreement with the major life choices I made—about my education or career or finances—gave me confidence in my own judgment. When they disagreed, I doubted myself intensely.
I sat alone at the kitchen table for an hour, fixated on the questions my parents had asked me, the last few sips of tea cooling in my cup, a brown skin of milk skimming the top. Would palliative care really be the best use of my education? Why wasn’t I more interested in fields that worked to improve patients’ survival? Wasn’t that what I had signed up for when I chose to go to medical school? Would I be able to handle the emotional intensity of palliative care? I tried to imagine myself working mainly in the ICU or as a cardiologist or primary care doctor—reputable specialties with tr
ansportable skill sets. I could see myself enjoying any of those jobs. I wouldn’t have to explain or defend my work, I’d be able to join my mother as a medical volunteer in India, I’d be able to help patients in familiar, well-understood ways. Maybe I could just integrate my interest in palliative medicine into the practice of a different subspecialty, just as some primary care physicians specialized in caring for patients with HIV. I threw myself into my ICU rotation, hoping that maybe I would enjoy it enough to part ways with palliative care.
* * *
The procedures and technology of the ICU thrilled me. It was immensely satisfying to do something very concrete to a patient with my hands and immediately relieve a bothersome symptom or administer a necessary medication. Each of us secretly hoped that our patients would require as many procedures as possible so that we could master each one. I loved learning to manage a ventilator just as my mother did every day; when we spoke in the evenings, I’d tell her what I learned about using certain settings on the ventilator to treat a patient with pneumonia, and other settings to support a patient with a flare of asthma. I told her how nervous I’d been to place a large catheter in a patient with kidney failure, and how relieved I’d felt when I finished the procedure successfully, enabling the patient to start dialysis.