The urologist broke the news: “Out of 12 cores, three were positive for cancer, so you have a small amount of cancer.”
He would soon explain the treatment choices — surgery, radiation, or active surveillance (watching the cancer closely with blood tests and biopsies). He described each option in elaborate detail, because he knew that the “right choice” would depend on what his 70-year-old patient thought about the pros and cons of treatment versus surveillance.
But before explaining the choices, the urologist wanted to make sure that the man in front of him understood the limited extent of his cancer:
“We grade prostate cancer on how it looks under the microscope. We give it a score between 6 and 10.”
“Is that the Gleason?” the patient asked.
“Yep, so 6 is what we consider the lowest grade, least aggressive-looking, but it’s just abnormal enough for us to call it cancer. If it were any less than that — if there were less atypical-looking cells — we couldn’t call it cancer. So it’s just enough to get a grade of cancer, and then that goes all the way up to a score of 10, which is very abnormal looking and is more aggressive.”
“But 6 is the beginning number?”
“Yes, 6 is the least aggressive, 10 is the most aggressive,” the doctor clarified.
“I’m used to like, 1,” the patient said, laughing.
“Yeah well, the way we typically split it up is into thirds; low risk, intermediate risk, and high risk.”
“Right,” said the patient.
“Low risk is Gleason 6, intermediate is usually 7′s — 3+4 or 4+3, depending on how it looks under the microscope. And then 8, 9, and 10 are all high risk. Yours is an intermediate risk. So it’s in the middle. It is 3+3 and 3+4, so just enough of the atypical cells of the grade 4 to make it 3+4, which means you’re intermediate risk.”
The conversation is remarkable not just for its inscrutability but for the very fact that it took place. In the 1960s, surveys of American physicians revealed that almost none of them informed patients of cancer diagnoses if they thought such information would cause emotional distress. By the early 1980s, medical practice had undergone a paradigm shift, with more than 90 percent of physicians stating they would never withhold such information from their patients.
Nearly 30 years ago, medical practice experienced a patient empowerment revolution, with prominent legal cases establishing that a patient has the right to information about a medical condition as well as final say about medical care. The goal of the revolution was to make sure that health-care decisions would be based not only on medical facts but also on a patient’s treatment preferences. Unfortunately, unless we change the way physicians are trained and paid, this goal will languish.
As evidenced by the Gleason score discussion above, when a physician resorts to jargon, the effort to educate patients can fail. Imagine yourself sitting half naked on an exam table with the word cancer rattling around your brain. Do you think you’d be able to comprehend such a conversation? Jargon is ubiquitous in physician-patient encounters; doctors frequently use undefined technical terms and patients rarely have the confidence or assertiveness to ask for clarification. All too often, the result is precious time wasted on ineffective communication despite the many important decisions doctors and patients need to make together. Medical terminology is second nature to physicians, but to patients it may sound like a foreign language.
To make matters worse, physicians often fail to account for a patient’s negative emotional state during medical consultations. In one study of senior oncologists, researchers discovered that when patients expressed negative emotions (“I’m scared” or “I can’t sleep because of pain”), the oncologists acknowledged and responded to the emotions only one in five times. More often, physicians either continued talking, as if the patients had never uttered the cries for help, or changed the topic to something less difficult, often shifting to lecture mode, doing their best to make sure their patients were adequately informed about their illness.
In short, doctors don’t know how to partner with patients to make decisions. In the old days (the more than two millennia between the time of Hippocrates and the patient empowerment revolution of the 1970s), physicians were the decision makers—deciding what patients should and shouldn’t know and determining which treatments patients should or shouldn’t receive. Indeed, the Hippocratic Oath compelled physicians to remain silent if such silence would reduce patient suffering: “Give necessary orders with cheerfulness and serenity, drawing his attention away from what is being done to him; sometimes reprove sharply and emphatically, and sometimes comfort with solicitude and attention, revealing nothing of the patient’s future or present condition.”
With the new paradigm, physicians have been knocked off the “Doctor Knows All” pedestal, without being told where to stand. Too often, physicians see their role as that of an information provider. Sometimes patients ask their doctors for advice, and doctors refuse to advise. Here’s a common physician response to such a request for treatment recommendations: “It’s not for me to decide. It’s your decision.” (Perhaps the patient had asked for advice because he was overwhelmed by the detailed Gleason score soliloquy he had just received.)
Other times, physicians willingly provide treatment recommendations, but only rarely after learning enough about the patient’s preferences. There are educational programs that are helping physicians work with their patients. One such program at Duke and two other institutions showed that, when taken to task, physicians can learn to listen to and improve their interactions with patients.
The medical profession is a public resource, paid for handsomely by both government and private markets to serve patients’ needs. It’s time to design a health-care system that holds health-care professionals accountable for meeting those needs.