Doctored (13 page)

After reviewing the case with my colleagues, I told Irey that he needed a right heart catheterization, in which a thin, flexible tube is threaded through a vein in the groin and into the right side of the heart to measure the pressures inside the heart and lungs. Data from the catheterization would help us treat Irey medically, but just as important—though I didn't tell him this—the data would help us determine whether he was eligible for a transplant. If the pressures were too high, then for technical reasons a transplant would not be feasible. What was the harm, I thought, in getting more information? Why not just do the evaluation and deal with his objections later?

With prodding from his wife, Irey reluctantly agreed, and he underwent the procedure the following day. In the early evening I reviewed the results with Santo, my attending that month. Poring over the catheterization report, Santo pointed out a critical discrepancy in the measurements. The pressure in Irey's lungs was high, but whether the elevation was reversible or not—a crucial factor in deciding if he was a transplant candidate—was open to interpretation. To settle the issue, Santo said, the procedure would have to be repeated. Initially I demurred, wondering if it was worth doing, given Irey's opposition to a transplant, but Santo insisted we try to convince Irey, for his own sake.

We went to talk to Irey. He was in bed, wearing bright red pajamas, a stark contrast with the air of grim expectation that permeated the room. Thin plastic tubing delivering supplemental oxygen pressed tightly against his sunken cheeks, ending in tiny prongs jutting into flaring brown nostrils. His wife was with him, sitting quietly; she barely acknowledged us when we entered. Santo greeted Irey and asked him how he was feeling. Irey replied that he was still uncomfortable, especially in the right upper quadrant of the abdomen (where fluid was probably backing up in his liver because of heart failure) and that he was so exhausted he could hardly move. He inquired about the results of the catheterization. Santo matter-of-factly told him that the measurements were inconclusive and would have to be repeated.

Irey closed his eyes. “I can't go through that again,” he rasped softly. His wife started to speak, but he stopped her. “Just treat me with medicines.”

“Yes, well, we are going to do that,” Santo replied with his slight Italian accent. “But if you require a transplant, then we will need that information.”

“No transplant,” Irey said, shaking his head. He said it with even more conviction than he had the previous evening. He asked how long he could live without one.

“You are very sick,” Santo said gravely. “I cannot really say, but your life span will be limited.”

“How limited?” Irey said. He seemed prepared to hear even the worst prognosis.

“The most severe problem is with your lungs,” Santo said. “We are not lung experts, so you really should ask the pulmonologists.”

“I'm asking for your opinion. How long do I have?”

Santo shrugged. “Maybe a year,” he said.

Irey didn't miss a beat. “That's fine, I'll take it. No transplant. And so I won't have to have the procedure tomorrow?”

Santo shot me a glance conveying he understood that convincing Irey would be more difficult than he had originally imagined. Leaning against a bedside table, where Irey's dinner tray was sitting untouched, he said, “Well, probably not. If you say ‘no transplant,' then it puts a different light on this hospitalization.”

“Then I can go home?”

“May I ask why you don't want a transplant?”

“I don't want to go through that,” Irey said, waving off the idea. “I don't want anyone cutting me open.”

“Your lungs are scarred,” Santo began to explain. “There is a lot of fibrosis—”

“But you will still treat me?” Irey interrupted.

“But this is not what I would call treatment,” Santo replied. “It is more, if you can understand what I mean, palliation.” The look in Irey's eyes told me he understood. “It is like giving Tylenol for a fever. You give the Tylenol and the fever goes away, but you are not any better.”

“But you will still treat me?” Irey pressed. “If I say no, you will still give me treatment to help me live as long as possible?”

“Well, yes, of course,” Santo said with a trace of exasperation, as if the question were absurd. “But there is treatment at the medical level and treatment at the transplant level. There is only so much we can do without a transplant. When you crash an engine, sometimes you can fix it, but sometimes the whole thing has to be replaced. This is the situation that you are now in. If it was just your heart, we could treat it. But your lungs are the more serious problem. That you will have to discuss with the lung specialists. They will talk to you tomorrow. I hope you will have a similar conversation with them as we are having today.”

“But you say one year,” Irey said hopefully.

“I don't know,” Santo replied quickly. “It could be less. You must ask the lung doctors. I don't want you to say, ‘Dr. Russo told me I have one year to live.' Let us just say, a few months to one year.”

“I understand,” Irey said, settling back, looking more relaxed. “I won't tell anyone.”

Mrs. Irey had a world-weary look, as if she had heard this discussion many times before. “Our understanding was that he could be put on a transplant list, and then we could decide,” she said.

Santo shook his head. “It does not work that way,” he said. “We need a firm commitment from the patient before we can put him on the list.”

“But how can he commit when he doesn't know what it means medically?” Mrs. Irey asked. I glanced at Irey, who appeared spent and preoccupied once again with his breathing.

“That is fine, but he has to buy into the concept,” Santo said. “Even then there is a low chance he will be accepted. For technical reasons we may not be able to—”

“Please forgive me for being so blunt,” Mrs. Irey interrupted, “but in your opinion, would it be worth the effort? Will he be better-off?” Irey looked away, as if he had heard this line of inquiry before.

“I think so,” Santo said carefully. “I can only speak about heart transplants because that is what I do, where the successes are great. People do very well. I mean, for the first six months there is a lot of intensive monitoring, and he has to take a lot of medicine for a very long time, some for life—”

“But will he be better-off?” Mrs. Irey asked again. “Will he have less suffering than if he says no right now?”

“There is an acute phase and a chronic phase,” Santo replied. “For six months, it is a critical period. For the first couple of weeks he may even do worse; obviously, they have to cut him open. But the end result can be very good.”

I shifted uncomfortably. It seemed to me that despite great advances in the field, Santo was painting a much rosier picture of organ transplantation than was warranted.

“I don't think he understands what it means,” Mrs. Irey said as her husband continued to stare meditatively at the wall. “I'm not sure he can make a decision with the information that he has.”

Of course, this came as no surprise to me. Hospitalized patients have a hard time properly weighing their options under the best of circumstances. In a situation like this, in which the stakes were so high and Irey was struggling just to take his next breath, how could we expect him to make such a difficult choice?

After a few more minutes, the issue still unresolved, Santo left. I stayed behind to remove the dressing on Irey's groin, where the catheter had been inserted. Irey groaned as the adhesive pulled on the trapped hairs. Slowly, methodically, I worked off the clear bandage, unwilling to give it a quick tug to end the pain.

“I know this is probably unfair, and I'm sorry to put you in this difficult position, but what would you do?” Mrs. Irey asked me.

It was a question that had been posed to me many times during my training. As I had learned, sometimes patients and their families want to hear their options and make their own decisions, but sometimes they just want doctors to tell them what to do. Of course, Irey wasn't the one asking for my advice, but there was enough uncertainty in the room to convince me that coming down strongly in favor of transplant might persuade Irey into making what I still thought was the right choice.

“I think you should have the catheterization and try to get on the transplant list,” I said, looking at Irey. “Frankly, the chances that you will be offered a transplant are pretty slim. If the answer is no, at least you know you exhausted all the options. Who knows? Six months from now, you might have second thoughts. Then you might be sicker, and it will be harder to start the process all over again. Besides, it's just another catheterization—”

“Have you had it?” Irey whispered.

“It's a routine test,” I replied.

“Have you had it?” he said again.

“No, I can't say I have.”

“Then you can't tell me what it's like, right?”

“Fair enough,” I said. Any risk or discomfort was his to bear, not mine.

Once he had extracted this admission from me, Irey's countenance softened. “I'll think about it overnight,” he said. “Will you come talk with me in the morning?” I said I would. “I would like that very much,” he said.

At home that night I found myself worrying about the advice I had given. Nothing about Irey's case suggested that he'd get the survival benefit that Santo had promised. How many patients like Irey, debilitated and weak, terminally ill with sarcoidosis, had been studied in transplant trials? Not many, I was willing to bet. In advising Irey to pursue a transplant, we were operating in the realm of intuition and faith. And, of course, so was he. We were pitting our faith against his.

Late the following morning I was walking through the cardiac care unit when I caught a glimpse of a patient with salt-and-pepper braids. He was in bed 10, on a ventilator, in a tangle of wires and tubes. Alarmed, I pulled aside a resident, who told me that Irey had just been brought in from the catheterization lab. A balloon-tipped catheter inflated during the procedure had apparently punctured his pulmonary artery, causing his blood pressure to drop precipitously. He had started coughing up blood and then had had a cardiac arrest on the operating table. I grabbed the chart, looking for a procedure note documenting what had happened (there was none). I paged Santo, but he did not call me back.

Then I saw Mrs. Irey. She came in, carrying a bag. I went over to her and grasped her hand, trying to think of something appropriate to say, but it escaped me. “He decided to have the procedure after you left,” she said, grief-stricken. “We didn't see you this morning, so we told the other doctors.”

My thoughts were like leaves fluttering in the wake of a speeding car. For the remainder of the day I tried to concentrate on my other patients, but the admonishments kept flooding in, even as I tried to hold them back. Why did you influence Irey against his better judgment? Aren't you responsible for what happened?

Irey pulled on for a couple of days, but his condition eventually spiraled downward and he died. Mrs. Irey never mentioned the conversation Santo and I had had with her husband, one that undoubtedly led to his premature death, other than to say, “He never wanted a transplant. Maybe he knew better than us.”

And perhaps he did. It sometimes still amazes me, more than a decade into my medical career, how much power doctors have to affect patients' lives, for better or for worse. With that power comes a tremendous responsibility to wield it wisely, sparingly, with humility. Every patient teaches a lesson, and the lesson James Irey taught me was that a doctor's words can have terrible consequences. Though our intentions were good, the outcome to which Santo and I undoubtedly contributed was horrible. But tragedy can be a powerful lesson. Doctors often think we know better than our patients, but of course, this isn't always true.

With my course on LVADs at Columbia now concluded, I found Santo in a back room in the CCU and thanked him for letting us go on rounds with him that morning. He reminded me that I could call him any time for advice or help, and we said goodbye. In the lobby, John was waiting for me, gazing quietly at the swell of foot traffic coursing through the busy complex. As we walked to my car, I again considered the great responsibility I now carried. I was caring for some of the sickest patients in the hospital. They weren't just relying on LVADs and other high technology. They were relying on me. They were waiting for me to make decisions that would affect the rest of their and their families' lives. “I have faith in you, Dr. Jauhar,” Ellen Turetz, a husky woman with short, spiky hair, had told me tearfully a few weeks prior. “I am only going to agree to the catheterization if you say so.” My patients didn't know about my private struggles, and probably wouldn't care much if they did. They assumed I was practicing my craft unencumbered by mundane worries, and that is the way it should be. And yet it is impossible to disentangle your personal life from your work or you cease to be human.

The turbulence at home over money and our future was sure to die down, I told myself wishfully. Maybe our financial situation would change. Maybe Sonia would become more accepting of the academic path I had chosen. I didn't know what was going to happen, but for now I resolved not to let my personal stresses affect my work. Leaving Columbia that day, I sorely missed being a fellow, when I had had no paternal and few familial responsibilities, when I had been able to focus almost exclusively on my work, and when the promise of a bright future had still been very much alive. Now the real world was beginning to encroach. I had hoped to keep it curtained off for as long as possible.

 

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