Being Mortal: Medicine and What Matters in the End (24 page)

Over the next couple years, however, the neck pain progressed. It became difficult for him to sleep comfortably. The tingling in the tips of his left fingers became full-blown numbness and spread to his whole left hand. He found he had trouble feeling the thread when tying sutures during vasectomies. In the spring of 2006, his doctor ordered an MRI of his neck. The findings were a complete shock. The scan revealed a tumor growing inside his spinal cord.

That was the moment when we stepped through the looking glass. Nothing about my father’s life and expectations for it would remain the same. Our family was embarking on its own confrontation with the reality of mortality. The test for us as parents and children would be whether we could make the path go any differently for my dad than I, as a doctor, had made it go for my patients. The No. 2 pencils had been handed out. The timer had been started. But we had not even registered that the test had begun.

My father sent me the images by e-mail, and we spoke by phone as we looked at them on our laptops. The mass was nauseating to behold. It filled the entire spinal canal, extending all the way up to the base of his brain and down to the level of his shoulder blades. It appeared to be obliterating his spinal cord. I was amazed that he wasn’t paralyzed, that all the thing had done so far was make his hand numb and his neck hurt. We didn’t talk about any of this, though. We had trouble finding anywhere safe for conversation to take purchase. I asked him what the radiologist’s report said the mass might be. Various benign and malignant tumors were listed, he said. Did it suggest any other possibilities besides a tumor? Not really, he said. Two surgeons, we puzzled over how a tumor like this could be removed. But there seemed no way, and we grew silent. Let’s talk to a neurosurgeon before jumping to any conclusions, I said.

Spinal cord tumors are rare, and few neurosurgeons have much experience with them. A dozen cases is a lot. Among the most experienced neurosurgeons was one at the Cleveland Clinic, which was two hundred miles from my parents’ home, and one at my hospital in Boston. We made appointments at both places.

Both surgeons offered surgery. They would open up the spinal cord—I didn’t even know that was possible—and remove as much of the tumor as they could. They’d only be able to remove part of it, though. The tumor’s primary source of damage was from its growth inside the confined space of the spinal canal—the beast was outgrowing its cage. The expansion of the mass was crushing the spinal cord against the vertebral bone, causing pain as well as destruction of the nerve fibers that make up the cord. So both surgeons proposed also doing a procedure to expand the space for the tumor to grow. They’d decompress the tumor, by opening the back of the spinal column, and stabilize the vertebrae with rods. It’d be like taking the back wall off a tall building and replacing it with columns to hold up the floors.

The neurosurgeon at my hospital advocated operating right away. The situation was dangerous, he told my father. He could become quadriplegic in weeks. No other options existed—chemotherapy and radiation were not nearly as effective in stopping progression as surgery. The operation had risks, he said, but he wasn’t too worried about them. He was more concerned about the tumor. My father needed to act before it was too late.

The neurosurgeon at the Cleveland Clinic painted a more ambiguous picture. While he offered the same operation, he didn’t push to do it right away. He said that while some spinal cord tumors advance rapidly, he’d seen many take years to progress, and they did so in stages, not all at once. He didn’t think my father would go from a numb hand to total paralysis overnight. The question therefore was when to go in, and he believed that should be when the situation became intolerable enough for my father to want to attempt treatment. The surgeon was not as blithe about its risks as the other neurosurgeon. He thought it carried a one in four chance of itself causing quadriplegia or death. My father, he said, would “need to draw a line in the sand.” Were his symptoms already bad enough that he wanted surgery now? Would he want to wait until he started to feel hand symptoms that threatened his ability to do surgery? Would he want to wait until he couldn’t walk?

The information was difficult to take in. How many times had my father given patients bad news like this—that they had prostate cancer, for instance, requiring similarly awful choices to be made. How many times had I done the same? The news, nonetheless, came like a body blow. Neither surgeon came out and said that the tumor was fatal, but neither said the tumor could be removed, either. It could only be “decompressed.”

In theory, a person should make decisions about life and death matters analytically, on the basis of the facts. But the facts were shot through with holes and uncertainties. The tumor was rare. No clear predictions could be made. Making choices required somehow filling the gaps, and what my father filled them with was fear. He feared the tumor and what it would do to him, and he also feared the solution being proposed. He could not fathom opening up the spinal cord. And he found it difficult to put his trust in any operation that he did not understand—that he did not feel capable of doing himself. He asked the surgeons numerous questions about how exactly it would be done. What kind of instrument do you use to enter the spinal cord, he asked? Do you use a microscope? How do you cut through the tumor? How do you cauterize the blood vessels? Couldn’t the cautery damage the nerve fibers of the cord? We use such and such an instrument to control prostate bleeding in urology—wouldn’t it be better to use that? Why not?

The neurosurgeon at my hospital didn’t much like my father’s questions. He was fine answering the first couple. But after that he grew exasperated. He had the air of the renowned professor he was—authoritative, self-certain, and busy with things to do.

Look, he said to my father, the tumor was dangerous. He, the neurosurgeon, had a lot of experience treating such tumors. Indeed, no one had more. The decision for my father was whether he wanted to do something about his tumor. If he did, the neurosurgeon was willing to help. If he didn’t, that was his choice.

When the doctor finished, my father didn’t ask any more questions. But he’d also decided that this man wasn’t going to be his surgeon.

The Cleveland Clinic neurosurgeon, Edward Benzel, exuded no less confidence. But he recognized that my father’s questions came from fear. So he took the time to answer them, even the annoying ones. Along the way, he probed my father, too. He said that it sounded like he was more worried about what the operation might do to him than what the tumor would.

My father said he was right. My father didn’t want to risk losing his ability to practice surgery for the sake of treatment of uncertain benefit. The surgeon said that he might feel the same way himself in my father’s shoes.

Benzel had a way of looking at people that let them know he was really looking at them. He was several inches taller than my parents, but he made sure to sit at eye level. He turned his seat away from the computer and planted himself directly in front of them. He did not twitch or fidget or even react when my father talked. He had that midwesterner’s habit of waiting a beat after people have spoken before speaking himself, in order to see if they are really done. He had small, dark eyes set behind wire-rim glasses and a mouth hidden by the thick gray bristle of a Van Dyke beard. The only thing to hint at what he was thinking was the wrinkle of his glossy dome of a forehead. Eventually, he steered the conversation back to the central issue. The tumor was worrisome, but he now understood something about my father’s concerns. He believed my father had time to wait and see how quickly his symptoms changed. He could hold off surgery until he felt he needed it. My father decided to go with Benzel and his counsel. My parents made a plan to return in a few months for a checkup and to call sooner if he experienced any signs of serious change.

Did he prefer Benzel simply because he’d portrayed a better, at least slightly less alarming picture of what might happen with the tumor? Maybe. It happens. Patients tend to be optimists, even if that makes them prefer doctors who are more likely to be wrong. Only time would tell which of the two surgeons was right. Nonetheless, Benzel had made the effort to understand what my father cared about most, and to my father that counted for a lot. Even before the visit was halfway over, he had decided Benzel was the one he would trust.

In the end, Benzel was also the one who proved right. As time passed, my father noticed no change in symptoms. He decided to put off the follow-up appointment. It was ultimately a year before he returned to see Benzel. A repeat MRI showed the tumor had enlarged. Yet physical examination found no diminishment in my dad’s strength, sensation, or mobility. So they decided to go primarily by how he felt, not by what the pictures looked like. The MRI reports would say haunting things, like the imaging “demonstrates significant increase in size of the cervical mass at the level of the medulla and midbrain.” But for months at a stretch, nothing occurred to change anything relevant for how he lived.

The neck pain remained annoying, but my father figured out the best positions for sleeping at night. When chilly weather came, he found that his numb left hand became bone-cold. He took to wearing a glove over it, Michael Jackson–style, even indoors at home. Otherwise, he kept on driving, playing tennis, doing surgery, living life as he had been. He and his neurosurgeon knew what was coming. But they also knew what mattered to him and left well enough alone. This was, I remember thinking, just the way I ought to make decisions with my own patients—the way we all ought to in medicine.

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DURING MEDICAL SCHOOL
, my fellow classmates and I were assigned to read a short paper by two medical ethicists, Ezekiel and Linda Emanuel, on the different kinds of relationships that we, as budding new clinicians, might have with our patients. The oldest, most traditional kind is a paternalistic relationship—we are medical authorities aiming to ensure that patients receive what we believe best for them. We have the knowledge and experience. We make the critical choices. If there were a red pill and a blue pill, we would tell you, “Take the red pill. It will be good for you.” We might tell you about the blue pill; but then again, we might not. We tell you only what we believe you need to know. It is the priestly, doctor-knows-best model, and although often denounced it remains a common mode, especially with vulnerable patients—the frail, the poor, the elderly, and anyone else who tends to do what they’re told.

The second type of relationship the authors termed “informative.” It’s the opposite of the paternalistic relationship. We tell you the facts and figures. The rest is up to you. “Here’s what the red pill does, and here’s what the blue pill does,” we would say. “Which one do you want?” It’s a retail relationship. The doctor is the technical expert. The patient is the consumer. The job of doctors is to supply up-to-date knowledge and skills. The job of patients is to supply the decisions. This is the increasingly common way for doctors to be, and it tends to drive us to become ever more specialized. We know less and less about our patients but more and more about our science. Overall, this kind of relationship can work beautifully, especially when the choices are clear, the trade-offs are straightforward, and people have clear preferences. You get only the tests, the pills, the operations, the risks that you want and accept. You have complete autonomy.

The neurosurgeon at my hospital in Boston showed elements of both these types of roles. He was the paternalistic doctor: surgery was my father’s best choice, he insisted, and my father needed to have it now. But my father pushed him to try to be the informative doctor, to go over the details and the options. So the surgeon switched, but the descriptions only increased my father’s fears, fueled more questions, and made him even more uncertain about what he preferred. The surgeon didn’t know what to do with him.

In truth, neither type is quite what people desire. We want information and control, but we also want guidance. The Emanuels described a third type of doctor-patient relationship, which they called “interpretive.” Here the doctor’s role is to help patients determine what they want. Interpretive doctors ask, “What is most important to you? What are your worries?” Then, when they know your answers, they tell you about the red pill and the blue pill and which one would most help you achieve your priorities.

Experts have come to call this shared decision making. It seemed to us medical students a nice way to work with patients as physicians. But it seemed almost entirely theoretical. Certainly, to the larger medical community, the idea that most doctors would play this kind of role for patients seemed far-fetched at the time. (Surgeons? “Interpretive?” Ha!) I didn’t hear clinicians talk about the idea again and largely forgot about it. The choices in training seemed to be between the more paternalistic style and the more informative one. Yet, less than two decades later, here we were with my father, in a neurosurgeon’s office in Cleveland, Ohio, talking about MRI images showing a giant and deadly tumor growing in his spinal cord, and this other kind of doctor—one willing to genuinely share decision making—was precisely what we found. Benzel saw himself as neither the commander nor a mere technician in this battle but instead as a kind of counselor and contractor on my father’s behalf. It was exactly what my father needed.

Rereading the paper afterward, I found the authors warning that doctors would sometimes have to go farther than just interpreting people’s wishes in order to serve their needs adequately. Wants are fickle. And everyone has what philosophers call “second-order desires”—desires about our desires. We may wish, for instance, to be less impulsive, more healthy, less controlled by primitive desires like fear or hunger, more faithful to larger goals. Doctors who listen to only the momentary, first-order desires may not be serving their patients’ real wishes, after all. We often appreciate clinicians who push us when we make shortsighted choices, such as skipping our medications or not getting enough exercise. And we often adjust to changes we initially fear. At some point, therefore, it becomes not only right but also necessary for a doctor to deliberate with people on their larger goals, to even challenge them to rethink ill-considered priorities and beliefs.