by Sunita Puri
“I can see the vein on your forehead,” he said stoically as he drove toward my high school. I had been in the middle of another of my rituals, trying to chew a piece of sugarless gum ten thousand times. I stopped chewing. When we paused at a red light, he told me to look in the mirror. A squiggle had appeared overnight at the corner of my right temple, just below my hairline. “I saw that on my mother before she died.” The light turned green, and I quietly watched familiar scenery speed by: blocks of apartment buildings surrounded by tall trees, a plaza with a gas station, a bigger plaza with a Burger King and banks, a Taco Bell and a TJ Maxx. My father drove me right up to the curb in front of the high school’s gymnasium and stopped the car. I waited for an outburst, the one I’d expected months ago. What is wrong with you? How can you be so stupid? Don’t you know the value of food? Don’t you know what starving yourself will do?
“I feel sad when I look at you,” he said. He asked me if I remembered what we had talked about when I was younger: That the body is temporary and it will always change, no matter how much we try to stop it. The soul, the spirit within the body, makes us who we are. Who we are has nothing to do with how our bodies look. Did I remember these things? he asked. I think I nodded. If you remember, then please feed your body, he said. It’s not who you are, but you need it to be who you are.
Throughout that day, I ran my finger across the vein on my forehead, thinking about my father’s words. By the age of ten, I had learned and could say aloud what my parents had taught my brother and me about the temporary nature of human life and the eternal nature of the soul. They’d told us that even our friendships with others were probably temporary. Change was the only constant. Living well would necessitate remembering what truly endured—the soul—and what didn’t—the body. But hearing and intellectually understanding these ideas—many of which I had no real way of understanding as a young child—didn’t translate into embodying them.
It would take me months to regain some of the weight I’d lost, but years to really begin to understand the many sad and complicated reasons I’d wanted to vanish, taking my body with me. Throughout those years, my father would remind me of what he had said that morning: That who I am is fundamentally distinct from my body. That my body was temporary and subject to both constant change and, eventually, its own physical limits. That I could not will my body into doing or being something it couldn’t.
I would need to return often to this duality between my self and my body during stretches of sadness when I felt that everything in my life would be simpler if only I didn’t weigh whatever I did. In the middle of one such stretch during residency, my father sent me a copy of the Bhagavad Gita, telling me that this particular translation was the best he had read. As I read each verse of the epic poem recounting a conversation between man and God, my eyes caught a phrase that I have returned to since: The soul wears the body like a cloth and discards it at the time of death.
Understanding this duality not only would help me personally, but would also shape how I spoke to my patients years later.
* * *
Several months into my first job, I received an unexpected voicemail from Dr. Coffey, one of the senior ICU physicians. “Unfortunately, I need your help with Joe Brown,” he said when I returned his call. I opened Joe’s chart and learned that, over the past five years, Joe’s heart had slowly been failing, struggling to circulate blood to the rest of his body. His lungs became waterlogged with fluid to the point where even walking from his bed to his bathroom in the morning exhausted him. His legs swelled and he couldn’t make it through his workdays at the post office. He took his diuretics and his diabetes medications regularly. But one day, while at work, he suddenly slumped over onto the counter and couldn’t move or talk. When his daughter, Teresa, heard he had been rushed to the hospital, she assumed he’d had another worsening of his heart failure. But this time, Joe had suffered a stroke. A large tide of blood flooded his delicate brain tissue, drowning some parts and depriving others of necessary oxygen. At the hospital, a ventilator filled his lungs with oxygen, and a tiny yellow tube that snaked through his left nostril and into his stomach provided him with artificial nutrition and most of his medications. But even when all sedating medications—which he needed to stay comfortable on the ventilator—were discontinued, Joe didn’t open his eyes or react when Dr. Fan, the neurologist, pinched his arm or rubbed his knuckles across Joe’s breastbone. Joe’s pupils, wide and dark, became only slightly and sluggishly smaller when confronted with a fluorescent flashlight. He barely coughed when his nurse tickled his throat with a suctioning device. Multiple parts of his brain weren’t working, at least not right now, and possibly not ever again.
If Teresa wanted to give his brain more time to rest in the exceedingly tiny chance it might recover, Dr. Fan said, then Joe would need a tracheostomy—to keep him on the ventilator more comfortably—and a feeding tube surgically inserted into his belly instead of keeping one in his nose. These measures would give him oxygen and nutrition. But whether his brain would recover, whether he would ever wake up and become who he once was, remained at best a remote possibility. “He will need to live in a nursing home probably for the rest of his life,” Dr. Fan told Teresa. “A nurse will need to clean him and turn him. He probably won’t be independent again. Do you think that’s something your father would be okay with? It’s something you need to think about before we put a tracheostomy and a feeding tube into him.”
“I don’t know how to talk to this family anymore,” Dr. Coffey told me, describing the meetings he and Dr. Fan had held with Teresa and her brother, Ray. I listened cautiously as he spoke, still surprised that he’d requested my help. Months ago, he’d told me that if he had to consult palliative care, it meant that he’d failed his patients. If he was asking for help, I thought as I listened to him, the situation must be really tough.
Dr. Coffey and Dr. Fan had held three prior meetings with Teresa and Ray, explaining that Mr. Brown’s stroke was among the most devastating they’d seen. If Joe was to survive, they’d told his children, it would be solely with the support of machines. He’d never go back to the post office. He might never recognize or speak to them again. But instead of talking about her father’s predicament, Teresa talked around it. The stroke would never have happened, she insisted, if his doctors had just done their job. She noticed her father twitching, which she interpreted as him trying to move even though Dr. Coffey and Dr. Fan both told her gently that those movements were involuntary and signified the extent of his brain damage. Still, she knew her father recognized her. She insisted that he would make a full recovery no matter what Dr. Coffey or Dr. Fan said. She wanted everything possible done for him.
“I’ll be honest. I’m tempted to just do whatever Teresa says just to shut her up, but first of all, we are already doing everything possible, and second of all, I know that doing whatever she says to do is not the right thing to do for Joe. Dr. Fan has explained to her so many times that he’s not going to wake up, that all his supposed movements are just involuntary twitches that actually mean he’s doing terribly. But she doesn’t listen to anyone. She thinks he’s trying to fight and a miracle is going to happen,” Dr. Coffey said. “Maybe she just needs to hear it from a new person, to get the perspective of a total stranger.”
* * *
Around the time I met Joe Brown, I realized that I doubled as an accidental linguist, helping patients and families to excavate the many layers of meaning they assign to a word or phrase. In the first few minutes of our conversation, Teresa would describe Joe as a fighter. Countless patients described themselves this way to me. When I first met her, Linda had described herself as a “warrior” against her failing kidneys. Back in fellowship, Dave told me he felt more like a “soldier” in his “battle against emphysema” than he ever felt he’d been in Vietnam. Recently, I’d seen an elderly patient with end-stage lung cancer hospitalized with severe pneumonia. Her granddaughters
superimposed an image of her face—thinned by cancer, crusted over with a slowly healing zoster rash—onto Hulk Hogan’s body, and hung photocopies on every wall in her room. “Don’t be fooled by her looks. My grandma is every bit as tough as the Hulk and there’s no way she’s losing to this wimpy old cancer!” her granddaughter said when I first met her. Her grandmother moaned, trying again to remove the oxygen mask over her nose and mouth. “See? She’s so strong, she thinks she can fight this without even the oxygen!”
I understood this impulse to fight. When faced with anything life threatening, our instinct to preserve our lives is so strong that it’s practically a biological response to fight an enemy in every way possible. Our bodies want to keep living, which is why they have so many built-in mechanisms to stay alive even when faced with life-threatening illnesses or injuries. When, for example, heart failure worsens, the kidneys work harder to preserve blood pressure. If we suffer blood loss in a car accident, the heart pumps harder and faster, and our rate of breathing increases to meet the body’s needs for blood and oxygen. But what do we fight for when, despite the best possible effort made by the body and mind and medicine, the disease grows stronger?
In residency and the early months of fellowship, I had the impression that self-described fighters would be difficult patients. Fighters were the ones who didn’t actually understand how sick they were. They demanded unrealistic treatments and berated doctors who wouldn’t provide them. They vocalized their courage and strength more loudly as their bodies weakened, as though the militaristic ferocity of their words alone could halt or reverse the territorial gains of their invisible enemy, be it cancer or heart disease or liver failure. When fighters died, their obituaries underscored their battles. Celebrities who died of cancer “lost their long battles” or “succumbed despite fighting.”
But what did these fighting words actually mean to the people who used them? Their use had become so pervasive that they were now de rigueur descriptors for anyone confronting mortality. Fighters wanted “everything” done to treat their disease. Fighters hoped for “miracles.” They refused to entertain any discussion of “giving up.” Some physicians I knew interpreted the descriptor “fighter” as an indication that they should provide all treatments possible, regardless of their harm. Who were they, as physicians, to challenge or unpack the word “miracle”? I had seen many a conversation stalled with the use of these phrases, and began to wonder if the way to advance a challenging discussion was to explore these word choices, to force clarity about what fighting for a miracle might mean in a very specific set of unfortunate circumstances. After all, didn’t the word “fight” imply a conflict? Did the fighter grasp the complexity and nuance of the battle? What did the fighter know about his or her enemy? How, specifically, did they understand the consequences of the fight, and what they were fighting for? How did they define “giving up”? What was worth fighting for? With what consequences for the battleground, which was inevitably one’s body and life? Could there be miracles aside from curing a disease, especially if that wasn’t possible?
The body has its own language, and Western medicine has become its adept interpreter. Using a blood pressure cuff, we can identify high blood pressure as the cause of chest pain. Through blood and urine samples, we can tell whether a person’s confusion is due to failing organs or an infection or taking too much of a certain medicine. But do we know how to listen when the body tries to tell us that it is dying despite our best efforts to forestall death? If we are giving patients the weapons to fight these so-called battles, isn’t it our responsibility to help them understand what may and may not be possible to fight for, with what ammunition, and with what consequences? Doesn’t that merit as much discussion as the ways in which a patient may want to fight?
As I thought about Mr. Brown’s predicament, I felt myself reaching for the language my father gave me years before about the body: that it was our home but not our identity, that it was scientifically known but infinitely mysterious, that we could try to make it bend to our will but nature would always prevail. I’d fought to understand this duality when my own life and well-being hung in the balance, but it had taken years for me to move from intellectually understanding this concept to inhabiting it with more ease. The soul wears the body like a cloth and discards it at the time of death. I wondered if I could use these words to help Mr. Brown.
* * *
Teresa Brown wanted me to know that she was a dutiful daughter. She sat in the visitor’s chair next to her father’s bed, empty coffee cups and a banana peel on the counter behind her. She opened two spiral notebooks, one filled with his medications, vital signs, daily weight, and notes taken during her father’s visits to his cardiologist over the past two years. The other was filled with feverish scribbles documenting the name of every nurse who took care of him, the time each nursing shift started and finished, details of what the nurse did for him, and verbatim accounts of her discussions with Dr. Coffey and Dr. Fan, some of them highlighted, clearly reviewed over and over again.
Over the last three days, she told me, she’d sat next to her sixty-year-old father, observing how the nurses turned him from side to side, taking notes on every medication given to him, quickly pointing out errors or misunderstandings.
No, that’s not his dose of metoprolol. Didn’t you read his home medication list?
This is the third time I’ve had to tell the nurses not to come in here in the middle of the night. Don’t they understand he needs to get some sleep?
I want to talk to the doctor directly about why this ultrasound was rescheduled. It’s the second time they told us there was an emergency and they have to delay the test.
“He is my father, and I don’t mess around,” she said, peering at me, eyebrows raised, over the top of her cat-eye-shaped glasses. When someone we love is fighting a formidable battle, we want to try to give them every chance of success. For Teresa, that meant never leaving her father’s side and struggling to control the aspects of his care that might help him pull through. Powerless in the face of so many unknowns—why her father had suffered a sudden stroke, whether he would recover, and what recovery would actually look like—she focused on the ways she could advocate for her father. I knew that she meant well. I could see myself acting from a similar place of fear, protectiveness, and love if my own father had been hospitalized. But as she spoke, I sensed a familiar, growing unease in my belly, a sensation akin to a hand pressing inward, squishing my innards, shortening my breath. I’d come to recognize this sensation as my body’s visceral reaction to patients or families who could quickly become adversarial. Not all scared daughters took notes on every aspect of nursing care or wrote down verbatim conversations with physicians. I tried to maintain both compassion for her and caution about the situation.
I’d struggled with this balance before with other patients and families, like the sister of a patient who yelled at me in the middle of a family meeting, “WHY ARE YOU ALWAYS SO NEGATIVE?” as her entire family and three of my colleagues looked on, stunned. Or the elderly man who asked me if I was the Grim Reaper. Or a patient’s wife who once said, “I can’t call you ‘Doctor’ the way I call other people here a doctor. Because you’re the opposite. You’re like a human killer.” The insults cut deep, even though I knew logically that patients and their families under tremendous duress spoke and acted in ways they might not mean. But even when my mind told me I could find a way to make an alliance with most people, my body tried its best to warn me that, sometimes, I simply couldn’t.
Teresa spoke again: “I’m sorry, what is your specialty again?”
She had been so intent on relaying various aspects of her father’s care that I realized I hadn’t had a chance to introduce myself in the fifteen minutes I’d been in the room. I resisted the urge to describe myself as a member of the “supportive care team,” a popular euphemism for the palliative care service. I decided instead to be straightforward with her. The
re was no point delaying the tension I was certain would follow.
“I am from the palliative care service,” I said, looking her in the eyes, keeping my voice even and gentle. “I work closely with many patients like your father who are in the ICU, and try to help in two ways. First, I help make sure that the patient’s symptoms like pain or nausea or difficulty breathing are all treated so they are comfortable. Second, I help families and the medical team with discussions about how to help match the medical treatment plan with the patient’s goals and values.”
Her expression changed from welcoming to surprised. “Well, you know, I’d say Dad is pretty comfortable right now. He’s just resting. I can tell you that his goal is to get better and go home. Simple. Does that answer your questions?”
“Yes, that’s most people’s goal, so I hear what you’re saying,” I began. “Has Dr. Coffey given you any updates about how your dad is doing?”
“Yes, he has,” she said. “I’ve written it all down here. Dad needs the respirator and the feeding tube, and we’re going to just take it day by day and see how he does.”
While her summary was technically correct, it didn’t acknowledge the fact that her father was likely not to make a meaningful recovery despite everything Dr. Coffey was doing for him. I wondered about his personhood, and what Joe would want if, at best, he might be a mere shadow of his former self.
I pushed back against the invisible hand as I took a deep breath. “I think what might be helpful is a meeting with your father’s doctors and both you and your brother. We can discuss exactly where we are in taking care of your father, and make sure that all of your questions are answered. How does that sound?”
Teresa responded with exasperation. “You folks always want to talk and meet and waste my time,” she said. “Do we really have to do this? Haven’t I already answered your questions?” I could feel my patience wearing thin, but reminded myself that if I were her, I, too, might be suffering from conversation fatigue, especially if most conversations were about my father’s failing health. But since we couldn’t talk with Joe about his care, we had to talk to Teresa. After all, she was his advocate.
