Authors: Sandeep Jauhar
I had asked myself that same question. “Putting him on a ventilator would have prolonged his suffering,” I said.
She nodded, blinking away tears. She noticed my wedding ring. “You are married?” she asked.
I nodded.
“Live each moment like it is your first,” she said. “Sometimes it is hard, but you have to try.”
OVER THE YEARS,
I have come to appreciate how problematic informed consent can be, and not just in emergencies. When I started residency, I viewed patient autonomy as an absolute good, an ethical imperative that trumped all others. In medical school I had learned about some of the infamous breaches of autonomy in the history of medicine: the Tuskegee study in the 1940s in which black men with syphilis were intentionally left untreated, despite the availability of penicillin, in order to study that disease's complications; or the Willow-brook study where developmentally disabled patients were intentionally infected with hepatitis. Even today, patients continue to be enrolled in experimental drug studies without proper consent, or under tacit intimidation.
Informed consent was supposed to guard against such abuses. But informed consent is practiced very differently from the way ethicists envisioned it. It was supposed to protect patients from doctors. Instead it is used to protect doctors from patients or, rather, from the hard decisions that patient care demands. Doctors nowadays sometimes use informed consent as a crutch to abdicate responsibility.
A few years later, when I was a cardiology fellow, a patient of mine had an angiogram. He was still lying on the operating table, catheters in his groin. A cardiologist called me over to review the film.
When I got to the cardiac catheterization lab, two attending physicians and a senior fellow were studying the angiogram on a computer monitor. The coronary arteries were sectioned off by five narrow blockages.
What to do? The senior physician favored angioplasty. Two blockages could be opened today, he said, and three at a later date. The others thought bypass surgery was the better option. Someone asked my opinion.
I thought about it for a few minutes. Surgery was probably the more durable solution. Bypass grafts could last a decade or more, longer than most stents. Plus, surgery for my patient meant one procedure, not two.
Still, there were risks. Because of his advanced disease, my patient probably had about a 10 percent chance of dying in surgery. If he survived, he could be left with memory deficits or chronic chest-wall pain. Plus, it would take longer for him to recover from surgery.
Since we couldn't reach a consensus and it wasn't an emergency, the senior attending physician made what seemed like a reasonable proposition: give the patient the options and let him decide. After all, he was the one who was going to have to live with the consequences.
He was lying on a long, narrow table, a middle-aged man covered from neck to toe by a sterile drape. His face had a strangely disconnected look, which I attributed to anxiety and sedation. He smiled as I approached. “The angiogram is done,” I started off saying.
I told him he had five blockages in three arteries and two options. Angioplasty could open the arteries without surgery, but he would need two procedures, one of which could be started right away. Open-heart surgery, on the other hand, probably offered him the best chance of not having to undergo another procedure in the future. “But it's a big surgery,” I added.
I didn't want to bias him one way or the other. A few months
before, I had convinced a patient to have heart-valve replacement surgery, which had resulted in serious complications. I didn't want another bad outcome on my conscience.
He listened intently but did not say much. I repeated his options. He nodded. So what did he want to do? He looked puzzled. “What is best?” he replied.
That I was having this conversation at all is testament to how much medicine has changed in the last two or three decades. In hospitals today, “patient autonomy” is the ruling ethical mantra, even superseding beneficence. But it can be a problem.
For one thing, patient autonomy often seems to be more important to doctors than patients. Sometimes patients want to hear their options and make their own decisions, but just as often, in my experience, they want doctors to guide them through the tough decisions and, yes, sometimes, tell them what to do. The father of a friend of mine died a few years ago from lung cancer. My friend told me that when he asked the doctors about chemotherapy, they gave him numbers and statistics but assiduously avoided giving advice, which was what he really needed.
“What is best?” my patient asked me again. “I can't tell you what to do,” I repeated. He stared blankly at me. I shifted my weight, feeling frustrated. Then I decided to start acting like a doctor.
“What are you afraid of?” I asked. It turns out his uncle had had open-heart surgery a few years back. Judging by his tone, he wanted no part of it. “It sounds like you're scared of surgery,” I said. He nodded. “So we should do the other thing,” I said. The patient agreed, so we did an angioplasty. It went well.
Another issue I continue to struggle with today is how to balance patient autonomy with the physician's obligation to do the best for his patient. As a doctor, when do you let your patient make a bad decision? When, if ever, do you draw the line? What if a decision could cost your patient's life? How hard do you push him to change his mind? At the same time, it is his life. Who are you to tell him how to live it?
In my second year of residency, I took care of a gay man who had
a CT scan of his head because of weakness in his legs and difficulty concentrating. It showed signs of a brain infection often associated with AIDS. I advised the man to have an HIV test. “If you are infected,” I told him, “it is better to know early.” But my patient refused. He said he didn't believe that HIV caused AIDS. When I pressed him, he emphatically stated he didn't want to discuss the matter any further.
My patient was neither psychotic nor delusional. For the most part, he spoke calmly and rationally. I didn't want to force him to take a test he didn't want, yet I didn't want his disease to progress to the point that it would be untreatable. I wasn't sure what to do, so I did what most doctors do in these situations: I called a psychiatrist.
The consulting psychiatrist that morning was a tall man with a serious, deliberative style befitting his line of work. I spoke with him in the hallway after he evaluated my patient. “Clearly he's making a bad decision,” the psychiatrist said. “But that isn't enough to deem him incompetent.” My patient's thoughts were not grossly disorganized, and he wasn't obviously depressed or psychotic. “He is showing impaired judgment,” the psychiatrist went on. “But we all have impaired judgment from time to time.” In other words, my patient could make a bad decision if he wanted to.
I felt torn. How far should a doctor go to make a patient do the right thing? When do the demands of beneficence outweigh those of patient autonomy? First, do no harm, I had been taught, but what about the harm a patient can inflict on himself?
Medical decisions necessarily involve value judgments, and who better to make those judgments than the patients involved? If a fashion model doesn't want surgery because it will leave a scar on her face, it may make sense in the context of her value system. Even though I may not agree with her, I can understand her reasoning and abide by her decision.
The problem with my gay patient was that I couldn't understand his reasoning. It seemed arbitrary to me, borne out of flawed reasoning and misinformation, not careful logic. It was the wrong decision for the
wrong reasons, but by the ethics prevailing in medicine, I couldn't force him to make a better one. Even so, hardly a week goes by that I do not wonder if I should have tried harder to persuade him to have the test.
Over time, my views on informed consent have evolved. I no longer view paternalism as suspiciously as I once did. I now believe that it can be a core component of good medical care.
Not long ago, as an attending physician in the CCU at the hospital where I now work on Long Island, I got an early morning call from a cardiology fellow. Mr. Smith could not breathe. Bright red blood, filling up the air spaces in his lungs, was spewing from his mouth whenever he coughed.
“So what are you waiting for?” I asked the cardiology fellow on the phone, trying to rub the sleep out of my eyes. “Intubate him.”
“He says he doesn't want a breathing tube,” the fellow replied.
“He's going to die without it,” I hollered.
“I know,” the fellow said matter-of-factly. “And I think he knows, too. But he still doesn't want it.”
I sank onto my living room sofa. What to do? Mr. Smith had come so far since his heart attack. Cardiac catheterization. A drug-coated stent to open up a blocked coronary artery. Intravenous blood thinners to keep the stent from clotting. Was it going to end like this?
“This is a reversible complication,” I told the fellow. I had seen such bleeding before with aggressive blood thinning. With a few days of ventilatory support, the bleeding should stop, we would be able to pull out the tube, and he would walk out of the hospital.
“What do you want me to do?” the fellow replied. “He's refusing.” He said that he had already tried the usual measures short of intubation: supplemental oxygen, diuretics, a pressurized face mask.
“Do you think he has decision-making capacity?” I asked. If not, we could make the decision for him.
“I think so,” the fellow replied, his voice thick from lack of sleep. “He apparently told the residents several days ago that he never wanted to be intubated.”
“He can't do this to himself,” I said. “Try to talk to him again. I'm coming in.”
Outside, the sun was rising. Speeding to the hospital on a lonely stretch of highway, I mulled over the options. As far as I could tell, there were only two: we could continue the current treatments and watch him die; or we could intubate him against his wishes.
From my car I called my brother, who had performed the catheterization. “Intubate him,” Rajiv said immediately. I explained that Mr. Smith did not want a breathing tube. “Who cares?” he cried. “He's going to die! He's not thinking straight.”
Perhaps Rajiv is right, I thought. After all, who in his right mind wants to die? Were we not asking too much of Mr. Smith? In an emergency like this, how could we expect him to make the right choice, any more than the cardiology fellow could have expected June Steinway or I could have expected Anna Izanian to do so years ago? As an experienced cardiologist, wasn't I in a better position to make Mr. Smith's decision than Mr. Smith?
When I got to the cardiac care unit, a crowd of doctors and nurses was at the patient's bedside and an anesthesiologist was preparing to insert a breathing tube. My brother took me aside. “He was breathing at forty times a minute and his oxygen saturation was dropping, so I made the decision to intubate him.”
I nodded quietly. I had made the same decision in the car.
Once the breathing tube was in, blood started rising in it like a red column. Nurses had to scramble for face shields and yellow gowns to protect themselves from the red spray. Pretty soon someone was pouring brown antiseptic soap onto Mr. Smith's groin in preparation for a central intravenous line. As needles started piercing his skin, Mr. Smith started swinging wildly. In intensive care units, the steamroller of technology starts moving quickly, flattening all ambivalence.
Eventually, with sedation, Mr. Smith settled down, and the critical care unit staff settled in for a long period of observation. If we had gambled right, he would recover within a few days. “If you
get through this,” I whispered to Mr. Smith, “I hope you can forgive me.”
Mr. Smith had a rocky hospital course. The bleeding in his lungs continued for several days, requiring large blood transfusions, but it eventually stopped. His blood pressure was too low, then too high. He had protracted, unexplained fevers.
After a few days, I rotated off service as the attending physician in the CCU. Over the following week, Mr. Smith remained intubated. A week later, I heard that his condition had improved. A week after that, a fellow stopped me in the hall to tell me that the breathing tube was out.
When I went to see him, I realized that I had never really looked at him as a person. He was a tall, muscular man in late middle age, with a broad forehead, a flat nose, and high, handsome cheekbones. I went to his bedside and introduced myself. He didn't recognize me.
“When you were really sick, I was one of the doctors who made the decision to put in the breathing tube,” I said. He nodded, eyeing me curiously. “I know you didn't want the tube,” I went on, “but if we didn't put it in, you would have died.”
He nodded again. “I've been through a lot,” he finally said, his voice still hoarse from two weeks of intubation.
“I know,” I replied.
“But thank you,” he said.
Some months later, I was asked to attend a meeting of the ethics committee at my hospital, of which I am a member, to discuss my actions. On the committee were nurses, social workers, physicians, and a rabbi wearing a yarmulke who often quoted the Talmud. My hands were clammy as I walked into the room that morning, mulling over how I was going to respond to their questions. When my case came up, I told the group I had decided to intubate Mr. Smith because I was not convinced that the CCU house staff had had the proper discussion with him before making him DNR. Not having had the conversation myself, not knowing whether he had been properly informed of his
choices or truly informed when he made his decision, I decided to err on the side of preserving his life. “I feel at peace with myself,” I said. “I feel justified that I made the right decision.”
A discussion ensued about the nature of paternalism. The head of the committee, a graying, grandfatherly man, explained that paternalism derives from the image of the paternal figure, the father, in a family. The father is motivated by an interest in his children's welfare. He acts on their behalf, but not at their behest. The beneficiariesâhis childrenâmay even repudiate the actions taken on their behalf. “Are we saying that as doctors we can reject patients' preferences by saying that their directives do not apply to their current circumstances or by saying they lack capacity because it is an emergent situation?” he asked. “Are we saying that as doctors we are all-knowing and that we have the last word?”