Her husband didn’t answer my question about her status. “It is essential that you tell us everything,” I urged. “The only people who will know are those who need to know.”
Then he said, “No, she is illegal.”
My heart sank. “This is a problem,” I said. “It is going to be very difficult to get your wife a new heart, and that is probably what she needs to live.”
He seemed genuinely shocked. “You just let them die?” he said.
Now it was my turn to waver. “In some cases they do die because there are so few hearts available,” I said carefully. “There are only about two hundred heart transplants per year in New York City. And that is in a city of eight million people.”
He turned away. “Don’t worry about her immigration status,” I said. “We won’t tell anyone.”
“I don’t care about that,” he replied. “I just care about my wife. I want her to live.” His lips quivered, and tears started to fall from his eyes. He excused himself and stepped into the hallway. Their son was watching quietly. His big brown eyes looked awful, scared and confused about what was happening, why his father was crying. I was sure he would remember this moment for the rest of his life.
The nurse stepped outside to comfort the husband. She returned two minutes later. “He says he is illegal, too,” she said.
Juana Morales wasn’t the only patient who was not forthcoming about the reality of her life. Ellie McGlone was a college student in her early twenties with red hair, pretty features, and a disarming sincerity. When I first met her in the ER, she told me that she had been on a KLM flight from Helsinki, Finland, to Detroit, where her grandmother lived, when she developed palpitations and dizziness. Finding her pale and sweaty, a flight attendant had taken her to the back of the plane to lie down. An EKG monitor applied to her chest, she said, revealed ventricular tachycardia, a potentially life-threatening arrhythmia.
When the plane landed at La Guardia Airport for a short layover, she hailed a taxi and asked the driver to take her to the nearest hospital. The airline had arranged for an ambulance, but she had refused it. “They wanted three paramedics in the ambulance instead of two,” she explained. “I don’t have that kind of money.” I told her that given the nature of the emergency, she would not have been responsible for the charges. “See, I didn’t know that,” she replied matter-of-factly.
She went to Flushing Hospital Medical Center because that was where the taxi driver took his own family when they were sick. Doctors there, after hearing her history, inserted a central intravenous line below her collarbone. They gave her some medications to stabilize her heartbeat, monitored her for several hours, and then transferred her to LIJ for further evaluation.
I asked about her medical history. She told me that her family suffered from an unknown blood disorder that caused premature heart attacks. Her mother had died at age thirty-three. Three maternal uncles had died in their thirties and forties. All her cousins were dead. The first, Sarah, died at age eighteen; Sarah’s brother, at age twenty-two. John, Josh, and Matthew all died in their twenties. Apart from her grandmother, my patient was the last one in her immediate family who was still alive.
I inquired about the medical workup in Finland. She told me she’d had a heart attack in her early twenties, necessitating angioplasty of a major coronary artery. When I asked for permission to obtain medical records from hospitals in Helsinki, she refused. “There are confidentiality issues,” she explained.
I performed a physical exam. Her blood pressure was 120/80: normal. Her lungs sounded clear, and her heartbeat was regular and normal. I noticed a long scar along the right side of her back, where, she told me, she had previously had lung surgery. “A blood clot was choking off part of my lung,” she explained, another consequence of the blood disorder.
An EKG and an echocardiogram were performed: both normal. Continuous EKG monitoring was normal. Routine blood tests revealed nothing unusual. Though she said she had been taking digitalis, the drug was undetectable in her blood.
I asked if there were family members I could talk to. There were some distant relations in Finland, but she didn’t want me to contact them. The same went for her fiancé in Washington, D.C., who had weathered “enough stress” because of her many hospitalizations. There was a phone number for her grandmother in the front of the chart, but she insisted that no one call her. “She buried nine children!” my patient cried. “She has suffered enough.”
Because of the central line in her chest, she had been requesting painkillers, mostly morphine, around the clock. She had also been complaining of nausea but had refused to take Zofran, the usual antiemetic, instead requesting promethazine, which accentuates the effect of morphine. “It is classic drug-seeking behavior,” a nurse told me.
I didn’t know what to do, so we waited to get more information. That evening her grandmother phoned the on-call resident, who had left a voice mail for her earlier in the day. “Oh, the old clotting disorder story,” the grandmother said. She explained that her granddaughter had used this story many times before to get hospitalized.
I felt sorry for my patient—but angry, too, at the lie. When I told her that we would no longer give her narcotics, she demanded to be discharged immediately. I tried to get her to stay until we could figure out what to do for her, but she left about an hour later, after the central line had been removed from her chest. “People don’t know what it’s like to lose your whole family, your mother, your cousins, and then be the last one and have to keep on living,” she said on her way out.
Deception by patients assumes many different guises. One is what the diagnostic bible of psychiatry calls malingering: “the intentional production of false or grossly exaggerated physical or psychiatric symptoms” motivated by the desire to avoid work, evade prosecution, obtain drugs, and so on. Another, spurred by the need to play the role of a sick person, is termed factitious disorder. When patients lie to themselves, convincing themselves that they are sick when they are not, the condition is called somatization disorder. And of course there is plain evasion, when patients like Ms. Morales simply withhold the truth about key details of their lives.
I believe Ellie was probably suffering from a malignant form of factitious disorder called Munchausen syndrome. In this syndrome, patients will often intentionally produce or distort symptoms because of a need to be seen as ill or injured. They will undergo painful tests or diagnostic procedures if necessary to maintain the lie.
“Deception” is a charged word when used in the context of medicine. It encapsulates precisely what we dread most in a doctor-patient relationship, which should be founded on trust, honesty, and openness. And yet it is there in the medical profession, and it often runs both ways. We physicians deceive our patients, too. We don’t always reveal when we make mistakes. We order unnecessary tests. We mislead by maintaining that our therapies (the placebo injections from my grandfather’s era, for example, and much of spinal surgery or angioplasty today) have more value, more evidence behind them, than they actually do. And we deceive ourselves, too. We espouse the patriotic (but deeply misguided) notion that the American medical system is the best in the world. We deny the sickness in our system and the role we as a profession have played in creating that sickness. We obsessively push ourselves to do more and more, for reasons, both knightly and knavish, that we often hide from ourselves.
Though I have thought deeply about these issues for much of my career, I am not immune to this sort of masquerade. I have at times practiced a sort of ethics of double effect. I have lied to myself and to my patients in the service of a larger goal.
In the summer of 2006 I met Lily Dunhill, an eighty-eight-year-old lady (in every sense of the word) with a severely leaky heart valve that was constantly putting her into acute heart failure. She wore a powdered face, thick lipstick, and salon-done blondish hair sitting on bony, wasted temples. When I first encountered her in the emergency room about a year before she died, I asked her with whom she l
ived. She told me her mother.
“No, seriously,” I said.
“My mother,” she insisted.
“Come on, how old are you?”
She grinned slyly. “Old enough to get married.”
She became one of my most beloved patients, coming to see John and me every few weeks. We admired her no-nonsense yet playful approach to life. “See, I’m direct,” she once told us. “I’m not going to tell you one thing when it’s another. You know who taught me how to smoke? It was during the war. It was a group of girls. So one time they said, ‘C’mon, Lily, just smoke,’ and that got the ball rolling, and now I can’t breathe.”
Though I generally do not practice primary care, I didn’t want Lily to have to travel to see multiple doctors, so I agreed to serve as her general physician as well as her cardiologist. She’d call John or me several times a week to update us on her condition (or sometimes just to chat). So it came as a shock when we learned one afternoon that she was in the intensive care unit. A few days earlier, she had been brought in by ambulance to the emergency room, where she’d had a respiratory arrest. She had been intubated with a breathing tube and admitted to the ICU with a diagnosis of worsening kidney and heart failure, under the care of Dr. Charles Muller, a critical care specialist. John rushed over to see her but was told by the ICU team that it was managing her case and “did not need cardiology input.” I went to see her anyway and made several treatment recommendations, which the ICU team did not follow.
John and I went to the ICU for three straight days. Though she was sedated and breathing with the aid of a ventilator, her lips curled upward in a smile whenever she saw us. Her skin was jaundiced, the color of polenta, a sign of liver failure. She had kidney failure, too, and had stopped making urine. On the third day I took a senior resident aside and asked him why the team hadn’t checked liver function tests. He said that Dr. Muller did not want her LFTs checked. “But what’s the etiology of her liver failure?” I demanded. He said that he did not know and that I should discuss it with Dr. Muller.
“I’ve been an ICU resident, too,” I said, getting angry. “You’re taking care of the sickest patients in the hospital, but that doesn’t mean you shouldn’t listen to a patient’s doctor. Our input should have some bearing on this case.” He again told me to discuss my concerns with Dr. Muller. “Fine,” I said. “Take me to him.”
Muller was sitting in his office, working on his desktop. He was a short man in his late forties with a full head of bushy salt-and-pepper hair. I stood in the doorway, with John and the resident waiting behind me. “I’d like to talk with you about my patient, Lily Dunhill,” I said. He looked up, as if he’d been expecting me. I told him I was concerned about her kidney failure. Was she going to be dialyzed? He said no. I asked why not.
“It isn’t appropriate,” Muller replied, “and Dr. Haney, the nephrologist, agrees with me.” He said he had inserted a catheter in her pulmonary artery, which showed that her cardiac output was severely compromised and that the blood pressure in her lungs was alarmingly high. “She has severe mitral valve regurgitation,” Muller reminded me. “That’s not going to get any better.”
“Why is she jaundiced?” I demanded. “Why not check her LFTs?”
“What am I going to do with the information?” Muller retorted. “She is at the end of her life. I could dialyze her, but for what purpose?”
“So that decision has already been made?”
“Yes, absolutely. As a doctor I don’t have to present every option to my patient. I can act with discretion.”
“She’s a sentient human being,” I cried. “She has the right to know if you’ve written her off. If you’re withholding potentially lifesaving treatment, she needs to know about it.”
Muller nearly jumped out of his seat. “Hold on, Dr. Jauhar. I don’t understand what you’re saying, so maybe you could explain!”
“Look, I respect your clinical judgment,” I said, backing down a bit, “but these decisions aren’t made in a vacuum. Whether you’re withholding or withdrawing treatment, she needs to be a party to that decision.”
“Dr. Jauhar, with all due respect, I don’t want her LFTs checked. I absolutely do not want dialysis discussed with her. If you want her managed differently, you can take her to the CCU under your care. I’m not suggesting you do that, by the way,” he quickly added.
“Why shouldn’t she know?” I shouted, giving up any attempt to hold a civil conversation.
“Because even if she said yes, I still wouldn’t offer her dialysis. It would be futile and inappropriate.”
I pressed him. “What about trying to wean her off the ventilator?”
“I can’t wean the ventilator with that chest X-ray. Plus, she can’t come off the ventilator if she isn’t making urine. She’ll drown in her own fluids.”
He assured me that all decisions had been discussed with her son.
“But she doesn’t lack capacity,” I said. “She doesn’t need a surrogate. She can make decisions for herself.”
I stormed back to my office. I didn’t know what to think. Was my judgment being blinded by sentiment? Was I trying too hard to save Lily, or was Muller not trying hard enough?
The following day I went to speak to Dr. Lerner, the chairman of the department of medicine. “It’s unfortunate,” he told me in his spacious office after I had delivered my complaint.
I said that it showed a certain—I fumbled for the right word—“I don’t know, arrogance, insecurity…”
“It’s not arrogance,” Lerner said. He told me how when he was in the ICU as a patient, his primary care physician had come by, but no one had followed his recommendations either. “I found it kind of strange, but I’ve seen this attitude in many ICU doctors. Muller doesn’t like to be questioned. I’ve seen him go down a certain path and be very reluctant to change. Maybe it is insecurity.” He suggested that I transfer my patient to the cardiac unit and take care of her myself.
The next morning, as transfer preparations were being made, I went to see Lily. Muller and his team were at her bedside. All I caught was “and I think it’s inappropriate,” and then they went on to the next patient.
When I walked into Lily’s room, she was on her side, being cleaned. A tube was in her rectum, draining liquid stool. I told the nurse that I was going to take her to the CCU. The nurse appeared relieved.
Predictably, Lily’s sojourn in the CCU was a disaster. She was unable to be weaned from the ventilator. Her liver failure worsened. Even as it became clear to me that she was going to die and that my aggressive interventions had been for no good purpose, I became very reluctant to change course, too. We checked blood tests several times per day. I inserted a pressure catheter in her pulmonary artery to monitor her hemodynamics. I started her on continuous veno-venous hemodialysis, but the dialysis catheter repeatedly got clotted because of her low blood pressure. The breathing tube remained in her throat till the end. Eventually she succumbed to multisystem organ failure and sepsis, nearly a week after I’d transferred her to my care. She was eighty-nine.
At their core, my actions were also a kind of deception: convincing myself, despite all the evidence, that I could save her, stay the inexorable course of her disease. Perhaps I was afraid of failure or embarrassed by my impotence, or maybe I was unwilling to face the grief over a dear patient’s dying; I don’t know. Those last few days of her life, she almost ceased to be a person for me. She became an experiment, a puzzle, one that I desperately wanted to solve. Of course, I thought of James Irey, the Trinidadian man whom I’d convinced to undergo a cardiac catheterization against his better judgment and who died from complications of the procedure. How much—and how little—had changed in the past four years.
In the end, we all practice a certain amount of deception to make it through our lives. We erect defenses to cope with our deepest fears: of powerlessness, loss, and death. Ernest Becker writes about the “vital lie” that keeps us from facing the true reality of our existe
nce. “We don’t want to admit that we do not stand alone, that we always rely on something that transcends us, some system of ideas and powers in which we are embedded.” And when that system, personal or professional, fails us, and the anxiety of our existence rushes in, sometimes the best we can do is to simply absorb ourselves in our everyday pursuits. Perhaps this is the solution to medicine’s midlife crisis, too: doctors focusing on their noble craft, their relationships with patients, the stuff over which we have some control. Ultimately, this may be the best hope for our professional salvation.
FIFTEEN
Ticktock
Death is not an event in life.
—Ludwig Wittgenstein
That summer, Mohan and I went to Fargo, North Dakota, to celebrate my father’s seventieth birthday. (Sonia, understandably nervous given the complications of the last pregnancy, stayed behind in New York.) “Don’t fly first-class,” my father said when I told him we were coming, though such an extravagance hadn’t even occurred to me. “I want my grandson to be strong, learn how to struggle.”
“Dad, he’s four years old!”
“Still, you don’t want to spoil him. It’s never too early to teach him right from wrong.”
Descending into Fargo on a small commuter jet, I peered out the window at the flat landscape. The fields were barren, dotted with lonely lights. My parents picked us up at the airport. My mother was dressed in an overcoat, though the weather was temperate. My father, insisting on carrying my luggage, struggled with the heavy suitcase. The cuffs on his pants were threadbare. His hair was whiter and more flyaway than I remembered from the last time I’d seen him. He offered me the car keys. On the way home, he was in an inexplicably foul mood.
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