The pain was sudden, intense.
Young and athletic, a distance runner, Jerome Groopman had no history of back pain. Yet one simple movement, standing upright from a seated position, had elicited a shooting pain. The doctors he consulted throughout the following weeks could find no cause.
Undeterred, he sought aggressive, decisive intervention. In his own father’s early death from a heart attack, Groopman had witnessed missed opportunities. At Massachusetts General Hospital and the University of California, Los Angeles, he had trained under enthusiastic interventionists, and in his career he had seen novel therapies work wonders for his patients. So when it was his turn as a patient, Groopman chose the most aggressive treatment available: a spinal fusion.
“It was a disaster,” says Groopman, who is today the Dina and Raphael Recanati Professor of Medicine at HMS and Beth Israel Deaconess Medical Center. The pain worsened. He lost mobility. But the experience planted a seed that led him, decades later, to join a debate that’s changing how patients and doctors make medical decisions.
Every Which Way
Shared decision making is itself a recent and revolutionary change in medicine. For more than two millennia, physicians understood their Hippocratic oath as license and duty to make key medical decisions for patients. (Indeed, they swore to keep their methods secret.) It was only in the twentieth century that the medical profession embraced informed consent, and even then, the emphasis was only on giving patients the information they needed to make the right decision.
In a 2001 report, Crossing the Quality Chasm, the Institute of Medicine proposed 10 principles for redesigning and improving care. Half of them involved shared decision making, from “the patient should be in control” to “the system should be transparent.” Twelve years later, professionals agree that patients should share in decisions about their medical care. But a spirited debate has followed about what that means, and how to get there.
Researchers, for instance, have noted that two patients presented with the same information often make different choices. Why? The conventional answer has been that patients are either underinformed or irrational and that any effort to share decision making should be approached first as a patient-education exercise. But recent studies suggest that the more a group of patients learns about the risks and benefits of various treatments, the more their decisions vary from one another’s.
Groopman’s experience suggests that patients aren’t irrational per se—rather, different personal values lead to different choices. One patient may opt for the certainty of an invasive test while another prefers less intervention. Their choices are shaped by emotions, relationships, and values. Identifying the values, and incorporating them in care decisions, has become a fundamental tenet of shared decision making. Still, experts say, presenting the facts and asking the patient “now what?” isn’t enough.
“It isn’t so simple, to just ask someone for his or her values,” says John Livingstone ’58. Livingstone, an HMS assistant clinical professor of psychiatry at McLean Hospital and founding director of the hospital’s Outpatient Service for Children, trains health coaches and health care providers how to effectively communicate with patients, with a focus on health-related behavior change and shared decision making. Increasingly, health care networks, insurers, and other institutions are turning to the tools of psychology—and to experts like Livingstone—for guidance on such communication.
New doctors receive training in how to talk to patients, and research points to the efficacy of a growing number of decision aids for patients: educational booklets, videos, and guiding questions designed to facilitate shared decision making. In 2011, a review of 86 studies found that patients who used decision aids had increased knowledge about their choices, more accurate risk perceptions, reduced internal conflict, and a greater chance of receiving the type of care that aligned with their values.
Advocates have urged the federal government to promote patient decision aids through a provision of the Affordable Care Act intended to encourage shared decision making. In January, bioethicist Ezekiel Emanuel ’85 made the case in an article in the New England Journal of Medicine.
“We believe that the Centers for Medicare and Medicaid Services should begin certifying and implementing patient decision aids,” he wrote with co-author Emily Oshima Lee, “aiming to achieve three important goals: promote an ideal approach to clinician–patient decision making, improve the quality of medical decisions, and reduce costs.”
Emanuel argued that Medicare and Medicaid should act quickly to require the use of decision aids for the 20 most frequently performed procedures, which include breast biopsy, prostatectomy, and surgery for low back pain. Indeed, such a tool may have helped Groopman reach a different decision years ago: One in five patients who participate in shared decision making chooses more conservative treatment than those who are not involved in the care decision, the 2011 review found.
But patient decision aids face competing headwinds. On one side are physicians who say that demands for their time already exceed the hours in a day. On the other are those like Livingstone and Groopman, who caution against reducing the patient–physician encounter to a checklist. “The patient’s truths are held by the patient, and aren’t often reflected in the questionnaire, in a checklist,” Livingstone says. “Human beings live and thrive on relational connection. It takes time to connect.”
“Even if you’re going to use a list of questions to guide an interview,” he adds, “don’t let it cover over your connection with the patient’s values, emotions, and beliefs—or your own.”
Livingstone thinks patient decision aids have a critical role to play in patient-centered care. But he cautions that the more widely used decision aids—such as the Ottawa Decision Support Framework—are dominated by approaches that may ignore a patient’s emotional states and needs. That mismatch, Livingstone says, reflects the ascendancy within psychiatry of cognitive methods, which emphasize patterns of thought and scripted conversations, and, perhaps, appeal to physicians’ natural affinity for its rational approach.
The problem, Livingstone says, is that patients, like doctors, may be aware of only certain aspects of their own selves. And an unvoiced concern, conscious or not, may sow regret or thwart a patient’s attempts to change behavior.
The good news, he says, is that new methods that also encompass emotions and relationships are producing the kinds of evidence-based solutions that health care providers demand, and that the nation’s Affordable Care Act mandates. “We’re on the cusp of change here,” Livingstone says. “We have an opportunity to do something that’s helpful to the entire field.”
Groopman and Pamela Hartzband ’78, an HMS assistant professor of medicine at Beth Israel Deaconess, warn against spreading a “factory model” of health care in their 2011 book, Your Medical Mind. “There is this incredible drive to standardize,” Groopman says. Adds Hartzband, “We believe in standardization for safety, but once you move out of that area of standardization and into patient and physician preference, much of medicine becomes a gray zone.”
Groopman, an oncologist, and Hartzband, an endocrinologist, plunged into that gray zone and detailed their findings in the book. After asking patients and physicians across the country how they make decisions, the researchers proposed a new model with three axes: minimalist/maximalist, naturalism/technology orientation, and doubter/believer.
When doctors recognize their own mindsets, the researchers say, they are better able to understand those of their patients, an insight that can be valuable to the process of shared decision making. It also helps physicians decipher their own decision-making patterns, and recognize how they align with and vary from each patient’s pattern.
What’s more, adds Livingstone, gaining this personal understanding frees doctors to focus on their patients’ needs. “You know on the airplane, the flight attendant tells you to put the oxygen mask on yourself first.”
“The medical community,” says Hartzband, “has been incredibly receptive to hearing about this dimension of care, which hasn’t been addressed in a substantial way.” Since publishing Your Medical Mind, the authors have spoken with practitioners around the country. The most rewarding question they encounter, Hartzband says, is: Why hasn’t anyone told us this before?
In hindsight, Groopman recognizes his approach as maximalist (choosing immediately the most aggressive intervention); technology orientation (seeking the newest approach); and believer (believing that medical science holds the answer to the problem). A minimalist might have waited to see whether his back improved on its own; a person with a naturalism orientation might have relied first on exercise; a doubter might have focused on the risks of surgery and the uncertainty of the prognosis.
Hartzband describes herself as a minimalist and doubter. As a thyroid specialist, she sees patients who need to make decisions about thyroid surgery despite having had repeated biopsies that did not yield enough cells to exclude a diagnosis of cancer. Many ask the question posed, eventually, to every physician: “What would you do, in my shoes?” Her answer: “It depends.” She explains that people have different ways of weighing risk and benefit. “If it was me, I’d watch and wait,” she tells them. “But my husband would have had the surgery yesterday.”
“I’m not as maximalist as I used to be,” says her husband—and co-author—Groopman.