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.