“How do you know?”
“Because I am a Rastafarian.”
“What does that mean?”
“It means I believe in me, and I believe in you, too.”
That night I told Sonia about Clement’s prediction. She seemed pleased. Though neither of us really cared whether we had a boy or a girl, Sonia, having grown up in a family of girls—two sisters, mostly female cousins—had been hoping for at least one boy. Later at the hotel, lying awake in bed, I told myself that if I ever had a child, I would be a different kind of father from my own dad, who had been too busy with his professional struggles to develop friendships with his children. He did a passable job—acceptable in that era—and we all ended up just fine. But he didn’t elevate to the highest ranks of parenting. He used coarse tools, like guilt, to foster the behavior he desired. I wanted to be a father with influence—in a good way—over his kids, unlike Dad, who had been too preoccupied with his own problems to garner that authority.
Just as Clement prophesied, Sonia did get pregnant a few months after we returned from Anguilla, and all signs pointed to our having a boy. The first sign presented itself at the beginning of the second trimester, when a homeless man, stooped and stinking and clutching a Bible, turned to us as we were walking along Seventy-seventh Street and shouted, “It’s a boy!” A week later, as we were riding on an elevator in our building, a four-year-old boy pointed at Sonia’s gravid belly and whispered something to his mother. After we stepped out at the ground floor, Sonia tapped me on the shoulder. “Did he just say…” She hesitated.
I nodded.
“What?” she demanded.
“He said, ‘It’s a boy,’” I replied.
Pleasantly spooked, she sank into a soft couch in the lobby and laughed. That is what she had heard, too.
Life, for the most part, was good. The tension of getting pregnant had evaporated. I was near the end of my fellowship and starting to interview for jobs (and was looking forward to finally achieving some financial security). Sonia herself was finishing her internal medicine residency at Lenox Hill Hospital on the Upper East Side and was mulling an offer to become chief resident for a year. After the stress of the previous two years, we couldn’t have asked for a smoother patch.
But then, midway through the second trimester, Sonia developed a complication of pregnancy that required us to choose between two surgical treatments: one was standard; the other, which we selected, was more novel and appealing. Two weeks later we found ourselves at the Ambulatory Surgery center at Roosevelt Hospital. Sonia was lying on a narrow gurney in a room with four or five other patients. An intake nurse went over her medications, allergies, and medical history. When I told her that Sonia was eighteen weeks pregnant, she switched pens to mark down this fact in bright red ink. Soon Sonia was hooked up to a fetal monitor, which traced a normal heartbeat on pink graph paper.
A few minutes before the operation was scheduled to begin, a physician’s assistant came up and demanded that Sonia sign a consent form for the standard surgery we did not want. When she refused, he said the operation was going to be canceled. Perplexed, I demanded to speak with our surgeon, Dr. Levinson.
“We were told this was our decision,” I cried when he showed up a half hour later.
“I’m just learning about this now,” Levinson replied calmly. He was a stocky Jewish surgeon in his late forties with an impressive professional record, including stints at the National Institutes of Health, that belied his awkward, slightly vacant air. He explained that the anesthesiologist, with whom he exclusively worked on such cases, had decided the procedure we had chosen wasn’t safe because he couldn’t ensure that our baby would get sufficient oxygen during surgery, an assessment that Sonia and I, as doctors, as well as our obstetrician, Dr. Edwards, with whom we had consulted, did not agree with. “I know you’re upset—”
“Upset? I’m furious! We thought everything was a go, and now you’re telling me this?”
“Everything I told you was correct from the way I understood it when we spoke—”
“Then tell me you’re going to do the operation. We’ll sign anything you want. These asshole anesthesiologists always raise objections. They don’t know the patient or the situation.”
“I understand—”
“I don’t need understanding!” I shouted. “All I want to talk about is how we can make this happen.” I was infuriated, not only by the precarious position in which we now found ourselves but also because I was sure that the unfounded fear of a lawsuit was at least partially driving the anesthesiologist’s decision. Nearly half of all anesthesiologists, and almost 100 percent of physicians in high-risk specialties such as neurosurgery, cardiology, and obstetrics, will face a medical malpractice claim at some point in their careers. Malpractice litigation is often the most stressful experience in a doctor’s professional life. Most doctors do not discuss it with colleagues or even with family members; it is a hidden shame. And though I might have sympathized with the anesthesiologist if I’d been on the other side of the doctor-patient dyad, none of this mattered to me as my pregnant wife lay on a gurney. Dr. Levinson was silent. “I’ll go to the head of the hospital if I have to,” I threatened, but I could tell from his expression that there was nothing more he was going to be able to do.
Trembling with anger, I left the room and went back to Sonia in the preoperative waiting area. I sat down beside her and stroked her hand. Looking at my face, she started to cry.
As the hours wore on, I continued to press our case. I demanded explanations. I asked for second opinions. When I requested that the anesthesiologist, a handsome Italian fellow with a bushy mustache, more business executive than doctor—and we, it seemed to me, more like job applicants than patients—recuse himself, he snapped that he did not want to talk in “lawyerly” language. He was acting almost like a conscientious objector, but I wasn’t sure what he was objecting to. Which moral principle was he defending? First do no harm? Professional integrity? A paternalistic duty to protect his patient from a mistake? Or were his considerations being driven by more knavish concerns? My father-in-law, also a doctor, tried to negotiate. No one would budge.
So, finally, we said no. I wasn’t going to let Sonia be pressured into an operation she did not want. At six o’clock, after waiting in the hospital for almost eleven hours, we went home to think about what to do.
Our case illustrates a basic conflict in modern American medicine. A patient’s right to self-determination is the prevailing ethic, but in reality doctors routinely place limits on it. For example, when a patient’s demand clashes with a doctor’s moral convictions, ethicists have argued that doctors can deny treatment. Gynecologists can refuse to perform abortions because of moral or religious beliefs. Physicians in intensive care units often withhold treatments they deem futile, especially for terminal illnesses (as I tried to do with Delmore Richardson, the brain-damaged patient in the CCU).
But conscientious objection is a relatively rare impetus for denying treatment. A more common situation is one in which a patient’s request conflicts with what a doctor believes to be good medical practice (and thus exposes the doctor to a possible charge of malpractice). In such cases the objection is over professional, not moral, integrity, though obviously moral questions are raised. In a doctor-patient dispute, who has the right to make the final call? Should doctors just do a patient’s bidding? We talk about a patient’s right to refuse treatment. But what about the right to demand it?
After I had started working at LIJ, a few months past this incident, I took care of a middle-aged man who had been admitted to the hospital with fever and shortness of breath. The man, Eric, was in his early forties, thin but toned, with colorful tattoos and a pallid countenance. A chest X-ray in the emergency room showed fluid in his lungs, but initially we did not know why it was there. An echocardiogram provided the answer. On one of his heart valves was an infected mass of tissue, a vegetation, flapping around wildly like a flag in the breeze. It h
ad severely damaged the valve, resulting in congestive heart failure.
Heart infections, caused by bacteria entering the bloodstream, can usually be treated with intravenous antibiotics; surgery is reserved for only the most complicated cases. In Eric’s case, a CT scan of the head showed several small bleeding sites, probably caused by parts of the vegetation breaking off and lodging in his brain. Surgeons decided that the valve needed to be replaced to prevent further injury.
A consulting neurologist recommended an MRI (magnetic resonance imaging) before surgery to make sure the infection had not caused any brain aneurysms that could rupture and bleed in the operating room, causing a stroke. When the scan showed no aneurysms, the neurologist asked for a cerebral angiogram to exclude even tiny aneurysms that the MRI might have missed. Though fairly routine, angiograms in rare cases can cause strokes because a catheter is threaded into the arteries that supply blood to the brain. Eric decided that although he wanted the surgery, he did not want this test.
“You know what I think,” he said to me. “I think they’re just throwing everything at this, and maybe they’ll find something, and then what? They got an MRI, and they’re still not satisfied!”
I explained that the doctors were being cautious.
“Hey, I’ll sit here with antibiotics going into me, no problem,” he replied. “But doing a procedure that could cause a stroke? That’s getting a little scary.”
I pulled out my stethoscope so I could listen to his lungs. What if he refused the angiogram? he asked, leaning forward. Couldn’t he have the operation anyway?
I told him that the surgeon would probably not operate without the angiogram, a hunch confirmed the following day.
“But what if I sign a paper accepting the risk?”
The outlines of a memory started to form in my mind. “I doubt that’s going to change anyone’s mind,” I said. I told him that if he felt strongly enough, I could arrange for him to be transferred to another hospital.
He did not want to do that. “Oh well, it is what it is,” he said, looking resigned. “They’re going to get what they want. It’s a losing battle.”
Though I agreed with the neurologist that an angiogram was needed before surgery, given the risks of even a tiny aneurysm bleeding during the operation, I felt uncomfortable about forcing Eric to have it. He had made it clear that he wanted to proceed with surgery without delay or additional testing. He was willing to accept the risks of this approach. But his doctors refused to honor this request.
How should such disputes be resolved? It isn’t always clear. In 1991 a Minnesota court ruled that the family of Helga Wanglie, an eighty-six-year-old woman in a coma, had the right to demand intensive medical treatment for her, even though her physicians wanted to stop life support because they believed it was futile. In that judgment, patient (or surrogate) autonomy trumped professional integrity. However, in most cases of medical futility, doctors have been allowed to exercise conscientious objection.
In part because of my own experience with Sonia and the baby, I have come to believe that doctors should deny treatment requests judiciously—and rarely. A surgeon might understandably refuse to operate on someone whose religious beliefs proscribe blood transfusions on the ground that he would not want to be forced into medical malpractice. But in cases with reasonable differences of opinion, in which the competing risks are at least debatable, it seems unfair and unwise to me to deny a patient’s choice. (If patient autonomy means anything, then patients have the right to make bad decisions, too.) Was Sonia’s anesthesiologist being virtuous or knavish? I’m still not sure. Professional integrity can indeed be a double-edged sword.
In the end, we flew to the world-famous Cleveland Clinic, where a young surgeon agreed to perform the operation we wanted. The brushed marble columns and labyrinthine corridors of the hospital lent an air of competence and credibility that we were desperately seeking. At our first appointment, a nurse with a Midwestern twang and a midwife’s manner came out to greet us. She shuttled Sonia through a quick triage and obtained her medical history. The surgeon came by around 11:00 a.m. I told him about our experience in New York. “If the patient says no, you have to listen to the patient,” he said kindly. “You have to be suspicious when a doctor is so dogmatic.”
We slept fitfully in the hospital the night before the surgery. Nurses came by every few hours to check blood pressure and vital signs. In the middle of the night, Sonia wanted me to take her for a walk. We wandered down mostly empty corridors to the chapel, a long and narrow chamber with stained-glass windows and a prominently displayed leather prayer book. Pro forma, I whispered a prayer. I hadn’t prayed in years, but at this point I would have done anything to stack the odds in our favor. After wandering into an adjoining room, I came back to find that Sonia was gone. I went outside, but I could not find her. I called her name, but she did not respond. I was about to leave when I saw her praying quietly in a pew at the front of the chapel. In the prayer book she had written: “Dear Lord, lead me the way to a complete cure.”
The chief of high-risk obstetrics came by in the morning, while I was in the cafeteria getting breakfast. With a fellow, she quickly performed a fetal ultrasound. She asked Sonia if she wanted to know the gender of the baby. Sonia said she preferred to wait until I returned. She asked the obstetrician to come back later to talk to both of us.
Back in the room, we waited nervously for a transporter. We still didn’t know the sex, but Sonia assured me: “We’re going to be all right. Our baby boy is my guardian angel, so don’t worry.”
At the surgical unit I was handed a pager and told that someone would call me when the operation was over. About an hour later, as I was pacing nervously in the family waiting area, the device buzzed. I hurried over to the front desk, where a nurse in blue scrubs and bonnet told me that the procedure had gone smoothly and that Sonia was already in the postanesthesia care unit. I rushed to her bedside. Though she was still groggy, she gripped my hand tightly, obviously elated. While waiting for her to fully wake up, I went to a hospital phone and paged the obstetrician. I introduced myself and asked her if she could tell me the sex of the baby. “You don’t want to wait for your wife?” she teased. I told her that Sonia was in recovery and that I would inform her later.
“It’s a bit early to tell for sure,” she hedged, “and we didn’t get the best pictures, but it looks like you’re having a girl!” A girl? Stunned, I said nothing, so sure had both of us been that it was a boy.
I thanked the obstetrician and wandered into a gift shop, where I bought a tiny figurine. In the recovery unit I gave it to Sonia. “Why pink?” she asked, still dazed. I told her what the obstetrician had told me. Smiling, Sonia said, “She is going to be my beauty, my tennis partner.”
In fact, the chief of obstetrics at the Cleveland Clinic turned out to have been wrong. We were actually having a boy, which was confirmed by an ultrasound two weeks later, after we had returned to New York. “Are you absolutely sure?” I pressed Mary, our flower-child, friendship-braceleted sonographer. I mentioned what we had been told in Cleveland.
“Oh, I’m pretty sure,” she said, “but let me check again.” She twisted the probe, trying to get clearer images. “Yes, see that? It’s definitely a boy.” She took a picture, which we put into a metal frame on the windowsill in our bedroom. I couldn’t help but laugh. The little boy in the elevator, the homeless guy on Seventy-seventh Street, and Clement, the Rastafarian, had all gotten it right. But not the chief of maternal-fetal medicine at the world-famous Cleveland Clinic with the aid of ultrasound!
We became addicted to monitoring our baby. Just for kicks, we’d sneak into the echo lab at NYU, where Sonia would lie on an exam table and I, a senior cardiology fellow, would gently press the cardiac ultrasound probe to her belly. Her eyes would twinkle, and I would smile, too, quietly overjoyed at the melding of my personal and professional lives. We spent hours watching a video I made of our baby throwing up his arms, startled. We couldn’t
pull ourselves away from him.
Then, in the thirty-fourth week of the pregnancy, with everything finally going smoothly, Dr. Edwards called Sonia at home and told her to schedule a caesarean section. She said she wanted to avoid any risk of further complications.
“I told her that I needed to discuss it with you,” Sonia said when I returned from the hospital that night, just after I had started my new job at LIJ. “It was like she wanted me to agree with her right on the spot because she said for the umpteenth time, totally well-meaning, I’m sure, ‘I don’t want you to feel antagonistic, I’m on your side,’ and in the most polite way possible I was, like, ‘Dr. E, I’m just asking questions.’ I’m sure she’s used to her patients just agreeing with her. Anyway, she’s available to see us tomorrow. She wants us to decide this week.”
We met at her office on East Seventy-second Street the following afternoon. Sitting across a desk from us, she explained her reasoning. The baby was mature. He should be delivered under the most controlled circumstances. Waiting until the baby was full-term would only invite further problems. I mentioned data I’d found nervously scouring the obstetrical literature suggesting that a vaginal delivery might be safer because it caused fewer alterations in maternal blood flow. But Edwards replied that this evidence was based on small studies that were not clearly applicable to our case. One problem with clinical research is that the profile of subjects rarely matches that of the patient in front of you. In the end, she made a convincing case and we reluctantly acquiesced, though it obviously wasn’t what we had hoped for.
The weekend before the scheduled C-section, I took my first call as a new attending. It was a busy weekend. I had to see patients at both LIJ and its sister institution, North Shore University Hospital, in Manhasset. On Saturday morning an elderly woman actually had an acute stroke while I was making my rounds. When I first visited her, she was speaking normally, asking to go home. Twenty minutes later a nurse paged me to say the patient was insensate, aphasic, and frothing at the mouth. She was totally mute when I ran upstairs to see her, her mouth drooping to one side, a look of alarm on her face. After rushing to the nurses’ station, I directed an intern to order an emergent CT scan of the brain and to page the neurologist on call. Unbelievably, the intern refused, saying that she was at the end of a twenty-four-hour shift and was going home. In fact, her insubordination had been legislated in 2003, the year prior, in rigid work-hour restrictions limiting residents to twenty-four hours on call, with three additional hours to hand off their patients. The caps were supposed to improve the learning environment by providing medical trainees with more opportunities to rest, but they seemed to have had the opposite effect, encouraging a kind of shiftwork mentality. Having done my own residency without strict work-hour limits, I believed that you had to see a patient’s illness through its course—observe the arc—to get a grip on the dynamics of the disease. I worried that the current crop of interns, mandated to leave the hospital after a long shift, was missing out on valuable lessons and was learning a mentality of moderation that is incompatible with the highest ideals of doctoring. As a resident I would never have insisted on leaving the hospital during an emergency involving one of my patients. However, I didn’t argue with this intern, and I ordered the scan and made the calls myself. The CT scan confirmed what I suspected, a huge stroke involving the left middle cerebral artery, and the patient was transferred immediately to the intensive care unit under the care of the neurology team.
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