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The sun was up, my shift over. I was sent home, the image of the twins being extracted from the uterus interrupting my sleep. Like a premature lung, I felt unready for the responsibility of sustaining life.
When I returned to work that night, I was a.s.signed to a new mother. No one antic.i.p.ated problems with this pregnancy. Things were as routine as possible; today was even her actual due date. Along with the nurse, I followed the mother's steady progress, contractions racking her body with increasing regularity. The nurse reported the dilation of the cervix, from three centimeters to five to ten.
"Okay, it's time to push now," the nurse said.
Turning to me, she said, "Don't worry-we'll page you when the delivery is close."
I found Melissa in the doctors' lounge. After some time, the OB team was called into the room: delivery was near. Outside the door, Melissa handed me a gown, gloves, and a pair of long boot covers.
"It gets messy," she said.
We entered the room. I stood awkwardly off to the side until Melissa pushed me to the front, between the patient's legs, just in front of the attending.
"Push!" the nurse encouraged. "Now again: just like that, only without the screaming."
The screaming didn't stop, and was soon accompanied by a gush of blood and other fluids. The neatness of medical diagrams did nothing to represent Nature, red not only in tooth and claw but in birth as well. (An Anne Geddes photo this was not.) It was becoming clear that learning to be a doctor in practice was going to be a very different education from being a medical student in the cla.s.sroom. Reading books and answering multiple-choice questions bore little resemblance to taking action, with its concomitant responsibility. Knowing you need to be judicious when pulling on the head to facilitate delivery of the shoulder is not the same as doing it. What if I pulled too hard? (Irreversible nerve injury, my brain shouted.) The head appeared with each push and then retracted with each break, three steps forward, two steps back. I waited. The human brain has rendered the organism's most basic task, reproduction, a treacherous affair. That same brain made things like labor and delivery units, cardiotocometers, epidurals, and emergency C-sections both possible and necessary.
I stood still, unsure when to act or what to do. The attending's voice guided my hands to the emerging head, and on the next push, I gently guided the baby's shoulders as she came out. She was large, plump, and wet, easily three times the size of the birdlike creatures from the previous night. Melissa clamped the cord, and I cut it. The child's eyes opened and she began to cry. I held the baby a moment longer, feeling her weight and substance, then pa.s.sed her to the nurse, who brought her to the mother.
I walked out to the waiting room to inform the extended family of the happy news. The dozen or so family members gathered there leapt up to celebrate, a riot of handshakes and hugs. I was a prophet returning from the mountaintop with news of a joyous new covenant! All the messiness of the birth disappeared; here I had just been holding the newest member of this family, this man's niece, this girl's cousin.
Returning to the ward, ebullient, I ran into Melissa.
"Hey, do you know how last night's twins are doing?" I asked.
She darkened. Baby A died yesterday afternoon; Baby B managed to live not quite twenty-four hours, then pa.s.sed away around the time I was delivering the new baby. In that moment, I could only think of Samuel Beckett, the metaphors that, in those twins, reached their terminal limit: "One day we were born, one day we shall die, the same day, the same second....Birth astride of a grave, the light gleams an instant, then it's night once more." I had stood next to "the grave digger" with his "forceps." What had these lives amounted to?
"You think that's bad?" she continued. "Most mothers with stillborns still have to go through labor and deliver. Can you imagine? At least these guys had a chance."
A match flickers but does not light. The mother's wailing in room 543, the searing red rims of the father's lower eyelids, tears silently streaking his face: this flip side of joy, the unbearable, unjust, unexpected presence of death...What possible sense could be made, what words were there for comfort?
"Was it the right choice, to do an emergency C-section?" I asked.
"No question," she said. "It was the only shot they had."
"What happens if you don't?"
"Probably, they die. Abnormal fetal heart tracings show when the fetal blood is turning acidemic; the cord is compromised somehow, or something else seriously bad is happening."
"But how do you know when the tracing looks bad enough? Which is worse, being born too early or waiting too long to deliver?"
"Judgment call."
What a call to make. In my life, had I ever made a decision harder than choosing between a French dip and a Reuben? How could I ever learn to make, and live with, such judgment calls? I still had a lot of practical medicine to learn, but would knowledge alone be enough, with life and death hanging in the balance? Surely intelligence wasn't enough; moral clarity was needed as well. Somehow, I had to believe, I would gain not only knowledge but wisdom, too. After all, when I had walked into the hospital just one day before, birth and death had been merely abstract concepts. Now I had seen them both up close. Maybe Beckett's Pozzo is right. Maybe life is merely an "instant," too brief to consider. But my focus would have to be on my imminent role, intimately involved with the when and how of death-the grave digger with the forceps.
Not long after, my ob-gyn rotation ended, and it was immediately on to surgical oncology. Mari, a fellow med student, and I would rotate together. A few weeks in, after a sleepless night, she was a.s.signed to a.s.sist in a Whipple, a complex operation that involves rearranging most abdominal organs in an attempt to resect pancreatic cancer, an operation in which a medical student typically stands still-or, at best, retracts-for up to nine hours straight. It's considered the plum operation to be selected to help with, because of its extreme complexity-only chief residents are allowed to actively partic.i.p.ate. But it is grueling, the ultimate test of a general surgeon's skill. Fifteen minutes after the operation started, I saw Mari in the hallway, crying. The surgeon always begins a Whipple by inserting a small camera through a tiny incision to look for metastases, as widespread cancer renders the operation useless and causes its cancellation. Standing there, waiting in the OR with a nine-hour surgery stretching out before her, Mari had a whisper of a thought: I'm so tired-please G.o.d, let there be mets. There were. The patient was sewn back up, the procedure called off. First came relief, then a gnawing, deepening shame. Mari burst out of the OR, where, needing a confessor, she saw me, and I became one.
- In the fourth year of medical school, I watched as, one by one, many of my cla.s.smates elected to specialize in less demanding areas (radiology or dermatology, for example) and applied for their residencies. Puzzled by this, I gathered data from several elite medical schools and saw that the trends were the same: by the end of medical school, most students tended to focus on "lifestyle" specialties-those with more humane hours, higher salaries, and lower pressures-the idealism of their med school application essays tempered or lost. As graduation neared and we sat down, in a Yale tradition, to rewrite our commencement oath-a melding of the words of Hippocrates, Maimonides, Osler, along with a few other great medical forefathers-several students argued for the removal of language insisting that we place our patients' interests above our own. (The rest of us didn't allow this discussion to continue for long. The words stayed. This kind of egotism struck me as ant.i.thetical to medicine and, it should be noted, entirely reasonable. Indeed, this is how 99 percent of people select their jobs: pay, work environment, hours. But that's the point. Putting lifestyle first is how you find a job-not a calling.) As for me, I would choose neurosurgery as my specialty. The choice, which I had been contemplating for some time, was cemented one night in a room just off the OR, when I listened in quiet awe as a pediatric neurosurgeon sat down with the parents of a child with a large brain tumor who had come in that night complaining of headaches. He not only delivered the clinical facts but addressed the human facts as well, acknowledging the tragedy of the situation and providing guidance. As it happened, the child's mother was a radiologist. The tumor looked malignant-the mother had already studied the scans, and now she sat in a plastic chair, under fluorescent light, devastated.
"Now, Claire," the surgeon began, softly.
"Is it as bad as it looks?" the mother interrupted. "Do you think it's cancer?"
"I don't know. What I do know-and I know you know these things, too-is that your life is about to-it already has changed. This is going to be a long haul, you understand? You have got to be there for each other, but you also have to get your rest when you need it. This kind of illness can either bring you together, or it can tear you apart. Now more than ever, you have to be there for each other. I don't want either of you staying up all night at the bedside or never leaving the hospital. Okay?"
He went on to describe the planned operation, the likely outcomes and possibilities, what decisions needed to be made now, what decisions they should start thinking about but didn't need to decide on immediately, and what sorts of decisions they should not worry about at all yet. By the end of the conversation, the family was not at ease, but they seemed able to face the future. I had watched the parents' faces-at first wan, dull, almost otherworldly-sharpen and focus. And as I sat there, I realized that the questions intersecting life, death, and meaning, questions that all people face at some point, usually arise in a medical context. In the actual situations where one encounters these questions, it becomes a necessarily philosophical and biological exercise. Humans are organisms, subject to physical laws, including, alas, the one that says entropy always increases. Diseases are molecules misbehaving; the basic requirement of life is metabolism, and death its cessation.
While all doctors treat diseases, neurosurgeons work in the crucible of ident.i.ty: every operation on the brain is, by necessity, a manipulation of the substance of our selves, and every conversation with a patient undergoing brain surgery cannot help but confront this fact. In addition, to the patient and family, the brain surgery is usually the most dramatic event they have ever faced and, as such, has the impact of any major life event. At those critical junctures, the question is not simply whether to live or die but what kind of life is worth living. Would you trade your ability-or your mother's-to talk for a few extra months of mute life? The expansion of your visual blind spot in exchange for eliminating the small possibility of a fatal brain hemorrhage? Your right hand's function to stop seizures? How much neurologic suffering would you let your child endure before saying that death is preferable? Because the brain mediates our experience of the world, any neurosurgical problem forces a patient and family, ideally with a doctor as a guide, to answer this question: What makes life meaningful enough to go on living?
I was compelled by neurosurgery, with its unforgiving call to perfection; like the ancient Greek concept arete, I thought, virtue required moral, emotional, mental, and physical excellence. Neurosurgery seemed to present the most challenging and direct confrontation with meaning, ident.i.ty, and death. Concomitant with the enormous responsibilities they shouldered, neurosurgeons were also masters of many fields: neurosurgery, ICU medicine, neurology, radiology. Not only would I have to train my mind and hands, I realized; I'd have to train my eyes, and perhaps other organs as well. The idea was overwhelming and intoxicating: perhaps I, too, could join the ranks of these polymaths who strode into the densest thicket of emotional, scientific, and spiritual problems and found, or carved, ways out.
- After medical school, Lucy and I, newly married, headed to California to begin our residencies, me at Stanford, Lucy just up the road at UCSF. Medical school was officially behind us-now real responsibility lay in wait. In short order, I made several close friends in the hospital, in particular Victoria, my co-resident, and Jeff, a general surgery resident a few years senior to us. Over the next seven years of training, we would grow from bearing witness to medical dramas to becoming leading actors in them.
As an intern in the first year of residency, one is little more than a paper pusher against a backdrop of life and death-though, even then, the workload is enormous. My first day in the hospital, the chief resident said to me, "Neurosurgery residents aren't just the best surgeons-we're the best doctors in the hospital. That's your goal. Make us proud." The chairman, pa.s.sing through the ward: "Always eat with your left hand. You've got to learn to be ambidextrous." One of the senior residents: "Just a heads-up-the chief is going through a divorce, so he's really throwing himself into his work right now. Don't make small talk with him." The outgoing intern who was supposed to orient me but instead just handed me a list of forty-three patients: "The only thing I have to tell you is: they can always hurt you more, but they can't stop the clock." And then he walked away.
I didn't leave the hospital for the first two days, but before long, the impossible-seeming, day-killing mounds of paperwork were only an hour's work. Still, when you work in a hospital, the papers you file aren't just papers: they are fragments of narratives filled with risks and triumphs. An eight-year-old named Matthew, for example, came in one day complaining of headaches only to learn that he had a tumor ab.u.t.ting his hypothalamus. The hypothalamus regulates our basic drives: sleep, hunger, thirst, s.e.x. Leaving any tumor behind would subject Matthew to a life of radiation, further surgeries, brain catheters...in short, it would consume his childhood. Complete removal could prevent that, but at the risk of damaging his hypothalamus, rendering him a slave to his appet.i.tes. The surgeon got to work, pa.s.sed a small endoscope through Matthew's nose, and drilled off the floor of his skull. Once inside, he saw a clear plane and removed the tumor. A few days later, Matthew was bopping around the ward, sneaking candies from the nurses, ready to go home. That night, I happily filled out the endless pages of his discharge paperwork.
I lost my first patient on a Tuesday.
She was an eighty-two-year-old woman, small and trim, the healthiest person on the general surgery service, where I spent a month as an intern. (At her autopsy, the pathologist would be shocked to learn her age: "She has the organs of a fifty-year-old!") She had been admitted for constipation from a mild bowel obstruction. After six days of hoping her bowels would untangle themselves, we did a minor operation to help sort things out. Around eight P.M. Monday night, I stopped by to check on her, and she was alert, doing fine. As we talked, I pulled from my pocket my list of the day's work and crossed off the last item (post-op check, Mrs. Harvey). It was time to go home and get some rest.
Sometime after midnight, the phone rang. The patient was crashing. With the complacency of bureaucratic work suddenly torn away, I sat up in bed and spat out orders: "One liter bolus of LR, EKG, chest X-ray, stat-I'm on my way in." I called my chief, and she told me to add labs and to call her back when I had a better sense of things. I sped to the hospital and found Mrs. Harvey struggling for air, her heart racing, her blood pressure collapsing. She wasn't getting better no matter what I did; and as I was the only general surgery intern on call, my pager was buzzing relentlessly, with calls I could dispense with (patients needing sleep medication) and ones I couldn't (a rupturing aortic aneurysm in the ER). I was drowning, out of my depth, pulled in a thousand directions, and Mrs. Harvey was still not improving. I arranged a transfer to the ICU, where we blasted her with drugs and fluids to keep her from dying, and I spent the next few hours running between my patient threatening to die in the ER and my patient actively dying in the ICU. By 5:45 A.M., the patient in the ER was on his way to the OR, and Mrs. Harvey was relatively stable. She'd needed twelve liters of fluid, two units of blood, a ventilator, and three different pressors to stay alive.
When I finally left the hospital, at five P.M. on Tuesday evening, Mrs. Harvey wasn't getting better-or worse. At seven P.M., the phone rang: Mrs. Harvey had coded, and the ICU team was attempting CPR. I raced back to the hospital, and once again, she pulled through. Barely. This time, instead of going home, I grabbed dinner near the hospital, just in case.
At eight P.M., my phone rang: Mrs. Harvey had died.
I went home to sleep.
I was somewhere between angry and sad. For whatever reason, Mrs. Harvey had burst through the layers of paperwork to become my patient. The next day, I attended her autopsy, watched the pathologists open her up and remove her organs. I inspected them myself, ran my hands over them, checked the knots I had tied in her intestines. From that point on, I resolved to treat all my paperwork as patients, and not vice versa.
In that first year, I would glimpse my share of death. I sometimes saw it while peeking around corners, other times while feeling embarra.s.sed to be caught in the same room. Here were a few of the people I saw die: 1. An alcoholic, his blood no longer able to clot, who bled to death into his joints and under his skin. Every day, the bruises would spread. Before he became delirious, he looked up at me and said, "It's not fair-I've been diluting my drinks with water."
2. A pathologist, dying of pneumonia, wheezing her death rattle before heading down to be autopsied-her final trip to the pathology lab, where she had spent so many years of her life.
3. A man who'd had a minor neurosurgical procedure to treat lightning bolts of pain that were shooting through his face: a tiny drop of liquid cement had been placed on the suspected nerve to keep a vein from pressing on it. A week later, he developed ma.s.sive headaches. Nearly every test was run, but no diagnosis was ever identified.
4. Dozens of cases of head trauma: suicides, gunshots, bar fights, motorcycle accidents, car crashes. A moose attack.
At moments, the weight of it all became palpable. It was in the air, the stress and misery. Normally, you breathed it in, without noticing it. But some days, like a humid muggy day, it had a suffocating weight of its own. Some days, this is how it felt when I was in the hospital: trapped in an endless jungle summer, wet with sweat, the rain of tears of the families of the dying pouring down.
- In the second year of training, you're the first to arrive in an emergency. Some patients you can't save. Others you can: the first time I rushed a comatose patient from the ER to the OR, drained the blood from his skull, and then watched him wake up, start talking to his family, and complain about the incision on his head, I got lost in a euphoric daze, promenading around the hospital at two A.M. until I had no sense of where I was. It took me forty-five minutes to find my way back out.
The schedule took a toll. As residents, we were working as much as one hundred hours a week; though regulations officially capped our hours at eighty-eight, there was always more work to be done. My eyes watered, my head throbbed, I downed energy drinks at two A.M. At work, I could keep it together, but as soon as I walked out of the hospital, the exhaustion would hit me. I staggered through the parking lot, often napping in my car before driving the fifteen minutes home to bed.
Not all residents could stand the pressure. One was simply unable to accept blame or responsibility. He was a talented surgeon, but he could not admit when he'd made a mistake. I sat with him one day in the lounge as he begged me to help him save his career.
"All you have to do," I said, "is look me in the eye and say, 'I'm sorry. What happened was my fault, and I won't let it happen again.'"
"But it was the nurse who-"
"No. You have to be able to say it and mean it. Try again."
"But-"
"No. Say it."
This went on for an hour before I knew he was doomed.
The stress drove another resident out of the field entirely; she elected to leave for a less taxing job in consulting.
Others would pay even higher prices.
As my skills increased, so too did my responsibility. Learning to judge whose lives could be saved, whose couldn't be, and whose shouldn't be requires an unattainable prognostic ability. I made mistakes. Rushing a patient to the OR to save only enough brain that his heart beats but he can never speak, he eats through a tube, and he is condemned to an existence he would never want...I came to see this as a more egregious failure than the patient dying. The twilight existence of unconscious metabolism becomes an unbearable burden, usually left to an inst.i.tution, where the family, unable to attain closure, visits with increasing rarity, until the inevitable fatal bedsore or pneumonia sets in. Some insist on this life and embrace its possibility, eyes open. But many do not, or cannot, and the neurosurgeon must learn to adjudicate.
I had started in this career, in part, to pursue death: to grasp it, uncloak it, and see it eye-to-eye, unblinking. Neurosurgery attracted me as much for its intertwining of brain and consciousness as for its intertwining of life and death. I had thought that a life spent in the s.p.a.ce between the two would grant me not merely a stage for compa.s.sionate action but an elevation of my own being: getting as far away from petty materialism, from self-important trivia, getting right there, to the heart of the matter, to truly life-and-death decisions and struggles...surely a kind of transcendence would be found there?
But in residency, something else was gradually unfolding. In the midst of this endless barrage of head injuries, I began to suspect that being so close to the fiery light of such moments only blinded me to their nature, like trying to learn astronomy by staring directly at the sun. I was not yet with patients in their pivotal moments, I was merely at those pivotal moments. I observed a lot of suffering; worse, I became inured to it. Drowning, even in blood, one adapts, learns to float, to swim, even to enjoy life, bonding with the nurses, doctors, and others who are clinging to the same raft, caught in the same tide.
My fellow resident Jeff and I worked traumas together. When he called me down to the trauma bay because of a concurrent head injury, we were always in sync. He'd a.s.sess the abdomen, then ask for my prognosis on a patient's cognitive function. "Well, he could still be a senator," I once replied, "but only from a small state." Jeff laughed, and from that moment on, state population became our barometer for head-injury severity. "Is he a Wyoming or a California?" Jeff would ask, trying to determine how intensive his care plan should be. Or I'd say, "Jeff, I know his blood pressure is labile, but I gotta get him to the OR or he's gonna go from Washington to Idaho-can you get him stabilized?"
In the cafeteria one day, as I was grabbing my typical lunch-a Diet c.o.ke and an ice cream sandwich-my pager announced an incoming major trauma. I ran to the trauma bay, tucking my ice cream sandwich behind a computer just as the paramedics arrived, pushing the gurney, reciting the details: "Twenty-two-year-old male, motorcycle accident, forty miles per hour, possible brain coming out his nose..."
I went straight to work, calling for an intubation tray, a.s.sessing his other vital functions. Once he was safely intubated, I surveyed his various injuries: the bruised face, the road rash, the dilated pupils. We pumped him full of mannitol to reduce brain swelling and rushed him to the scanner: a shattered skull, heavy diffuse bleeding. In my mind, I was already planning the scalp incision, how I'd drill the bone, evacuate the blood. His blood pressure suddenly dropped. We rushed him back to the trauma bay, and just as the rest of the trauma team arrived, his heart stopped. A whirlwind of activity surrounded him: catheters were slipped into his femoral arteries, tubes shoved deep into his chest, drugs pushed into his IVs, and all the while, fists pounded on his heart to keep the blood flowing. After thirty minutes, we let him finish dying. With that kind of head injury, we all murmured in agreement, death was to be preferred.
I slipped out of the trauma bay just as the family was brought in to view the body. Then I remembered: my Diet c.o.ke, my ice cream sandwich...and the sweltering heat of the trauma bay. With one of the ER residents covering for me, I slipped back in, ghostlike, to save the ice cream sandwich in front of the corpse of the son I could not.
Thirty minutes in the freezer resuscitated the sandwich. Pretty tasty, I thought, picking chocolate chips out of my teeth as the family said its last goodbyes. I wondered if, in my brief time as a physician, I had made more moral slides than strides.
A few days later, I heard that Laurie, a friend from medical school, had been hit by a car and that a neurosurgeon had performed an operation to try to save her. She'd coded, was revived, and then died the following day. I didn't want to know more. The days when someone was simply "killed in a car accident" were long gone. Now those words opened a Pandora's box, out of which emerged all the images: the roll of the gurney, the blood on the trauma bay floor, the tube shoved down her throat, the pounding on her chest. I could see hands, my hands, shaving Laurie's scalp, the scalpel cutting open her head, could hear the frenzy of the drill and smell the burning bone, its dust whirling, the crack as I pried off a section of her skull. Her hair half shaven, her head deformed. She failed to resemble herself at all; she became a stranger to her friends and family. Maybe there were chest tubes, and a leg was in traction...
I didn't ask for details. I already had too many.
In that moment, all my occasions of failed empathy came rushing back to me: the times I had pushed discharge over patient worries, ignored patients' pain when other demands pressed. The people whose suffering I saw, noted, and neatly packaged into various diagnoses, the significance of which I failed to recognize-they all returned, vengeful, angry, and inexorable.
I feared I was on the way to becoming Tolstoy's stereotype of a doctor, preoccupied with empty formalism, focused on the rote treatment of disease-and utterly missing the larger human significance. ("Doctors came to see her singly and in consultation, talked much in French, German, and Latin, blamed one another, and prescribed a great variety of medicines for all the diseases known to them, but the simple idea never occurred to any of them that they could not know the disease Natasha was suffering from.") A mother came to me, newly diagnosed with brain cancer. She was confused, scared, overcome by uncertainty. I was exhausted, disconnected. I rushed through her questions, a.s.sured her that surgery would be a success, and a.s.sured myself that there wasn't enough time to answer her questions fairly. But why didn't I make the time? A truculent vet refused the advice and coaxing of doctors, nurses, and physical therapists for weeks; as a result, his back wound broke down, just as we had warned him it would. Called out of the OR, I st.i.tched the dehiscent wound as he yelped in pain, telling myself he'd had it coming.
n.o.body has it coming.
I took meager solace in knowing that William Carlos Williams and Richard Selzer had confessed to doing worse, and I swore to do better. Amid the tragedies and failures, I feared I was losing sight of the singular importance of human relationships, not between patients and their families but between doctor and patient. Technical excellence was not enough. As a resident, my highest ideal was not saving lives-everyone dies eventually-but guiding a patient or family to an understanding of death or illness. When a patient comes in with a fatal head bleed, that first conversation with a neurosurgeon may forever color how the family remembers the death, from a peaceful letting go ("Maybe it was his time") to an open sore of regret ("Those doctors didn't listen! They didn't even try to save him!"). When there's no place for the scalpel, words are the surgeon's only tool.
For amid that unique suffering invoked by severe brain damage, the suffering often felt more by families than by patients, it is not merely the physicians who do not see the full significance. The families who gather around their beloved-their beloved whose sheared heads contained battered brains-do not usually recognize the full significance, either. They see the past, the acc.u.mulation of memories, the freshly felt love, all represented by the body before them. I see the possible futures, the breathing machines connected through a surgical opening in the neck, the pasty liquid dripping in through a hole in the belly, the possible long, painful, and only partial recovery-or, sometimes more likely, no return at all of the person they remember. In these moments, I acted not, as I most often did, as death's enemy, but as its amba.s.sador. I had to help those families understand that the person they knew-the full, vital independent human-now lived only in the past and that I needed their input to understand what sort of future he or she would want: an easy death or to be strung between bags of fluids going in, others coming out, to persist despite being unable to struggle.
Had I been more religious in my youth, I might have become a pastor, for it was the pastoral role I'd sought.
- With my renewed focus, informed consent-the ritual by which a patient signs a piece of paper, authorizing surgery-became not a juridical exercise in naming all the risks as quickly as possible, like the voiceover in an ad for a new pharmaceutical, but an opportunity to forge a covenant with a suffering compatriot: Here we are together, and here are the ways through-I promise to guide you, as best as I can, to the other side.
By this point in my residency, I was more efficient and experienced. I could finally breathe a little, no longer trying to hang on for my own dear life. I was now accepting full responsibility for my patients' well-being.
My thoughts turned to my father. As medical students, Lucy and I had attended his hospital rounds in Kingman, watching as he brought comfort and levity to his patients. To one woman, who was recovering from a cardiac procedure: "Are you hungry? What can I get you to eat?"
"Anything," she said. "I'm starving."
"Well, how about lobster and steak?" He picked up the phone and called the nursing station. "My patient needs lobster and steak-right away!" Turning back to her, he said, with a smile: "It's on the way, but it may look more like a turkey sandwich."
The easy human connections he formed, the trust he instilled in his patients, were an inspiration to me.
A thirty-five-year-old sat in her ICU bed, a sheen of terror on her face. She had been shopping for her sister's birthday when she'd had a seizure. A scan showed that a benign brain tumor was pressing on her right frontal lobe. In terms of operative risk, it was the best kind of tumor to have, and the best place to have it; surgery would almost certainly eliminate her seizures. The alternative was a lifetime on toxic antiseizure medications. But I could see that the idea of brain surgery terrified her, more than most. She was lonesome and in a strange place, having been swept out of the familiar hubbub of a shopping mall and into the alien beeps and alarms and antiseptic smells of an ICU. She would likely refuse surgery if I launched into a detached spiel detailing all the risks and possible complications. I could do so, doc.u.ment her refusal in the chart, consider my duty discharged, and move on to the next task. Instead, with her permission, I gathered her family with her, and together we calmly talked through the options. As we talked, I could see the enormousness of the choice she faced dwindle into a difficult but understandable decision. I had met her in a s.p.a.ce where she was a person, instead of a problem to be solved. She chose surgery. The operation went smoothly. She went home two days later, and never seized again.
Any major illness transforms a patient's-really, an entire family's-life. But brain diseases have the additional strangeness of the esoteric. A son's death already defies the parents' ordered universe; how much more incomprehensible is it when the patient is brain-dead, his body warm, his heart still beating? The root of disaster means a star coming apart, and no image expresses better the look in a patient's eyes when hearing a neurosurgeon's diagnosis. Sometimes the news so shocks the mind that the brain suffers an electrical short. This phenomenon is known as a "psychogenic" syndrome, a severe version of the swoon some experience after hearing bad news. When my mother, alone at college, heard that her father, who had championed her right to an education in rural 1960s India, had finally died after a long hospitalization, she had a psychogenic seizure-which continued until she returned home to attend the funeral. One of my patients, upon being diagnosed with brain cancer, fell suddenly into a coma. I ordered a battery of labs, scans, and EEGs, searching for a cause, without result. The definitive test was the simplest: I raised the patient's arm above his face and let go. A patient in a psychogenic coma retains just enough volition to avoid hitting himself. The treatment consists in speaking rea.s.suringly, until your words connect and the patient awakens.
Cancer of the brain comes in two varieties: primary cancers, which are born in the brain, and metastases, which emigrate from somewhere else in the body, most commonly from the lungs. Surgery does not cure the disease, but it does prolong life; for most people, cancer in the brain suggests death within a year, maybe two. Mrs. Lee was in her late fifties, with pale green eyes, and had transferred to my service two days earlier from a hospital near her home, a hundred miles away. Her husband, his plaid shirt tucked into crisp jeans, stood by her bedside, fidgeting with his wedding ring. I introduced myself and sat down, and she told me her story: For the past few days, she had felt a tingling in her right hand, and then she'd begun to lose control of it, until she could no longer b.u.t.ton her blouse. She'd gone to her local ER, fearing she was having a stroke. An MRI was obtained there, and she was sent here.
"Did anyone tell you what the MRI showed?" I asked.
"No." The buck had been pa.s.sed, as it often was with difficult news. Oftentimes, we'd have a spat with the oncologist over whose job it was to break the news. How many times had I done the same? Well, I figured, it can stop here.
"Okay," I said. "We have a lot to talk about. If you don't mind, can you tell me what you understand is happening? It's always helpful for me to hear, to make sure I don't leave anything unanswered."
"Well, I thought I was having a stroke, but I guess...I'm not?"
"That's right. You aren't having a stroke." I paused. I could see the vastness of the chasm between the life she'd had last week and the one she was about to enter. She and her husband didn't seem ready to hear brain cancer-is anyone?-so I began a couple steps back. "The MRI shows a ma.s.s in your brain, which is causing your symptoms."
Silence.
"Do you want to see the MRI?"
"Yes."
I brought up the images on the bedside computer, pointing out her nose, eyes, and ears to orient her. Then I scrolled up to the tumor, a lumpy white ring surrounding a black necrotic core.
"What's that?" she asked.
Could be anything. Maybe an infection. We won't know till after surgery.
My inclination to dodge the question still persisted, to let their obvious worries float in their heads, unpinned.
"We can't be sure until after surgery," I began, "but it looks very much like a brain tumor."
"Is it cancer?"
"Again, we won't know for certain until it is removed and examined by our pathologists, but, if I had to guess, I would say yes."
Based on the scan, there was no doubt in my mind that this was glioblastoma-an aggressive brain cancer, the worst kind. Yet I proceeded softly, taking my cues from Mrs. Lee and her husband. Having introduced the possibility of brain cancer, I doubted they would recall much else. A tureen of tragedy was best allotted by the spoonful. Only a few patients demanded the whole at once; most needed time to digest. They didn't ask about prognosis-unlike in trauma, where you have only about ten minutes to explain and make a major decision, here I could let things settle. I discussed in detail what to expect over the next couple of days: what the surgery entailed; how we'd shave only a small strip of her hair to keep it cosmetically appealing; how her arm would likely get a little weaker afterward but then stronger again; that if all went well, she'd be out of the hospital in three days; that this was just the first step in a marathon; that getting rest was important; and that I didn't expect them to retain anything I had just said and we'd go over everything again.
After surgery, we talked again, this time discussing chemo, radiation, and prognosis. By this point, I had learned a couple of basic rules. First, detailed statistics are for research halls, not hospital rooms. The standard statistic, the Kaplan-Meier curve, measures the number of patients surviving over time. It is the metric by which we gauge progress, by which we understand the ferocity of a disease. For glioblastoma, the curve drops sharply until only about 5 percent of patients are alive at two years. Second, it is important to be accurate, but you must always leave some room for hope. Rather than saying, "Median survival is eleven months" or "You have a ninety-five percent chance of being dead in two years," I'd say, "Most patients live many months to a couple of years." This was, to me, a more honest description. The problem is that you can't tell an individual patient where she sits on the curve: Will she die in six months or sixty? I came to believe that it is irresponsible to be more precise than you can be accurate. Those apocryphal doctors who gave specific numbers ("The doctor told me I had six months to live"): Who were they, I wondered, and who taught them statistics?
Patients, when hearing the news, mostly remain mute. (One of the early meanings of patient, after all, is "one who endures hardship without complaint.") Whether out of dignity or shock, silence usually reigns, and so holding a patient's hand becomes the mode of communication. A few immediately harden (usually the spouse, rather than the patient): "We're gonna fight and beat this thing, Doc." The armament varies, from prayer to wealth to herbs to stem cells. To me, that hardness always seems brittle, unrealistic optimism the only alternative to crushing despair. In any case, in the immediacy of surgery, a warlike att.i.tude fit. In the OR, the dark gray rotting tumor seemed an invader in the fleshy peach convolutions of the brain, and I felt real anger (Got you, you f.u.c.ker, I muttered). Removing the tumor was satisfying-even though I knew that microscopic cancer cells had already spread throughout that healthy-looking brain. The nearly inevitable recurrence was a problem for another day. A spoonful at a time. Openness to human relationality does not mean revealing grand truths from the apse; it means meeting patients where they are, in the narthex or nave, and bringing them as far as you can.