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.
* * *
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.
; In my career, I have always been most comfortable being Dr. Informative. (My generation of physicians has mostly steered away from being Dr. Knows-Best.) But Dr. Informative was clearly not sufficient to help Sara Monopoli or the many other seriously ill patients I’d had.
Around the time of my father’s visits with Benzel, I was asked to see a seventy-two-year-old woman with metastatic ovarian cancer who had come to my hospital’s emergency room because of vomiting. Her name was Jewel Douglass, and looking through her medical records, I saw that she’d been in treatment for two years. Her first sign of the cancer had been a feeling of abdominal bloating. She saw her gynecologist, who found, with the aid of an ultrasound, a mass in her pelvis the size of a child’s fist. In the operating room, it proved to be an ovarian cancer, and it had spread throughout her abdomen. Soft, fungating tumor deposits studded her uterus, her bladder, her colon, and the lining of her abdomen. The surgeon removed both of her ovaries, the whole of her uterus, half of her colon, and a third of her bladder. She underwent three months of chemotherapy. With this kind of treatment, most ovarian cancer patients at her stage survive two years and a third survive five years. About 20 percent of patients are actually cured. She hoped to be among these few.
She reportedly tolerated the chemotherapy well. She’d lost her hair but otherwise experienced only mild fatigue. At nine months, no tumor could be seen on her CT scans at all. At one year, however, a scan showed a few pebbles of tumor had grown back. She felt nothing—they were just millimeters in size—but there they were. Her oncologist started a different chemotherapy regimen. This time Douglass had more painful side effects—mouth sores, a burn-like rash across her body—but with salves of various kinds they were tolerable. A follow-up scan showed the treatment hadn’t worked, though. The tumors grew. They began giving her shooting pains in her pelvis.
She switched to a third kind of chemotherapy. This one was more effective—the tumors shrank, the shooting pains went away—but the side effects were much worse. Her records reported her having terrible nausea despite trying multiple medications to stop it. Limb-sapping fatigue put her in bed for hours a day. An allergic reaction gave her hives and intense itching that required steroid pills to control. One day, she became severely short of breath and had to be brought to the hospital by ambulance. Tests showed she had developed pulmonary emboli, just as Sara Monopoli had. She was put on daily injections of a blood thinner and only gradually regained her ability to breathe normally.
Then she developed clenching, gas-like pains in her belly. She began vomiting. She found she could not hold anything down, liquid or solid. She called her oncologist, who ordered a CT scan. It showed a blockage in a loop of her bowel caused by her metastases. She was sent from the radiology department to the emergency room. As the general surgeon on duty, I was called to see what I could do.
I reviewed the images from her scan with a radiologist, but we could not precisely make out how the cancer was causing her intestinal blockage. It was possible that the bowel loop had gotten caught on a knuckle of tumor and then twisted—a problem that could potentially resolve on its own, if given time. Or else the bowel had become physically compressed by a tumor growth—a problem that would resolve only with surgery to either remove or bypass the obstruction. Either way, it was a troubling sign of the advancement of her cancer—despite, now, three regimens of chemotherapy.
I went to talk to Douglass, thinking about exactly how much of this to confront her with. By this time, a nurse had given her intravenous fluids and a resident had inserted a three-foot-long tube into her nose down to her stomach, which had already drained out a half liter of bile-green fluid. Nasogastric tubes are uncomfortable, torturous devices. People who have the things stuck into them are usually not in a conversational mood. When I introduced myself, however, she smiled, made a point of having me repeat my name, and made sure she could pronounce it correctly. Her husband sat by her in a chair, pensive and quiet, letting her take the lead.
“I seem to be in a pickle from what I understand,” she said.
She was the sort of person who’d managed, even with the tube taped into her nose, to fix her hair, which she wore in a bob, put her glasses back on, and smooth her hospital sheets over herself neatly. She was doing her best to maintain her dignity under the circumstances.
I asked how she was feeling. The tube had helped, she said. She felt much less nauseated.
I asked her to explain what she’d been told. She said, “Well, doctor, it seems my cancer is blocking me up. So everything that goes down comes back up again.”
She’d grasped the grim basics perfectly. At this point, we had no especially difficult decisions to make. I told her there was a chance that this was just a twist in a bowel loop and that with a day or two’s time it might open up on its own. If it didn’t, I said, we’d have to talk about possibilities like surgery. Right now, though, we could wait.
I was not yet willing to raise the harder issue. I could have pushed ahead, trying to be hard-nosed, and told her that, no matter what happened, this blockage was a bad harbinger. Cancers kill people in many ways, and gradually taking away their ability to eat is one of them. But she didn’t know me, and I didn’t know her. I decided I needed time before attempting that line of discussion.
A day later, the news was as good as could be hoped. First, the fluid flowing out of the tube slowed down. Then she started passing gas and having bowel movements. We were able to remove her nasogastric tube and feed her a soft, low-roughage diet. It looked like she would be fine for now.
I was tempted simply to discharge her home and wish her well—to skip the hard conversation altogether. But this wasn’t likely to be the end of the matter for Douglass. So before she left, I returned to her hospital room and sat with her, her husband, and one of her sons.
I started out saying how pleased I was to see her eating again. She said she’d never been so happy to pass gas in her life. She had questions about the foods she should eat and the ones she shouldn’t in order to avoid blocking up her bowel again, and I answered them. We made some small talk, and her family told me a bit about her. She’d once been a singer. She became Miss Massachusetts 1956. Afterward, Nat King Cole asked her to join his tour as a backup singer. But she discovered that the life of an entertainer was not what she wanted. So she came home to Boston. She met Arthur Douglass, who took over his family’s funeral home business after they married. They raised four children but suffered through the death of their oldest child, a son, at a young age. She was looking forward to getting home to her friends and family and to taking a trip to Florida they had planned to get away from all this cancer business. She was eager to leave the hospital.
Nonetheless, I decided to push. Here was an opening to discuss her future, and I realized it was one I needed to take. But how to do it? Was I just to blurt out, “By the way, the cancer is getting worse and will probably block you up, again”? Bob Arnold, a palliative care physician I’d met from the University of Pittsburgh, had explained to me that the mistake clinicians make in these situations is that they see their task as just supplying cognitive information—hard, cold facts and descriptions. They want to be Dr. Informative. But it’s the meaning behind the information that people are looking for more than the facts. The best way to convey meaning is to tell people what the information means to you yourself, he said. And he gave me three words to use to do that.
“I am worried,” I told Douglass. The tumor was still there, I explained, and I was worried the blockage was likely to come back.
They were such simple words, but it wasn’t hard to sense how much they communicated. I had given her the facts. But by including the fact that I was worried, I’d not only told her about the seriousness of the situation, I’d told her that I was on her side—I was pulling for her. The words also told her that, although I feared something serious, there remained uncertainties—possibilities for hope within the parameters nature had imposed.
I let her and her family take
in what I’d said. I don’t remember Douglass’s precise words when she spoke, but I remember that the weather in the room had changed. Clouds rolled in. She wanted more information. I asked her what she wanted to know.
This was another practiced and deliberate question on my part. I felt foolish to still be learning how to talk to people at this stage of my career. But Arnold had also recommended a strategy palliative care physicians use when they have to talk about bad news with people—they “ask, tell, ask.” They ask what you want to hear, then they tell you, and then they ask what you understood. So I asked.
Douglass said she wanted to know what could happen to her. I said that it was possible that nothing like this episode would ever happen again. I was concerned, however, that the tumor would likely cause another blockage. She’d have to return to the hospital in that case. We’d have to put the tube back in. Or I might need to do surgery to relieve the blockage. That could require giving her an ileostomy, a rerouting of her small bowel to the surface of her skin where we would attach the opening to a bag. Or I might not be able to relieve the blockage at all.
She didn’t ask any more questions after that. I asked her what she’d understood. She said she understood that she wasn’t out of trouble. And with those words, tears sprang to her eyes. Her son tried to comfort her and say things would be all right. She had faith in God, she said.
A few months later, I asked her whether she remembered that conversation. She said she sure did. She didn’t sleep that night at home. The image of wearing a bag in order to eat hovered in her mind. “I was horrified,” she said.
She recognized that I was trying to be gentle. “But that doesn’t change the reality that you knew that another blockage was in the offing.” She’d always understood that the ovarian cancer was a looming danger for her, but she really hadn’t pictured how until then.
Being Mortal: Medicine and What Matters in the End Page 19
