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The Decision Turf Between Care Providers and Patients

There has been a shift in medicine toward involving patients more in decisions about their own health. In an article in today’s Journal of the American Medical Association, a California physician explains how that outwardly time-consuming process could not only make patients happier with their care, but might actually save time for care providers.

Time is short for physicians, especially these days. And that’s one of the reasons the patient-doctor dynamic shifted from one extreme to another, according to Alexander Kon, who has been a pediatric intensive care physician at UC Davis (though he is soon taking his talents to San Diego, to  the Naval Medical Center there).

About two decades ago, Kon said, many physicians embraced a new model of care, where the doctor provides information and leaves the final decision about treatment options up to the patient. Which is both good and bad, he said.

“That’s one of the reasons that physicians were willing to transition from paternalistic care to patient-driven care in the ’80s and ’90s,” Kon said. “It was very practical, it takes less responsibility, has less burden. And it seemed to be attractive to patients. But what we’ve come to find is that patients often don’t get what they want from that. Patients want their health care provider to not just give information, but also to take part in decisions.”

Kon portrays it as a continuum of care — on one end, with the informed physician telling the patient what to do, and on the other end, with the physician informing and the patient deciding.

“This idea of finding mid-space on the continuum becomes a lot more work for the physician, at least at first,” Kon said. There’s the passing-on of information, discussing what the patient wants, both in terms of what to do but also how much that patient wants to be the one making decisions. There’s the physician bias toward the benefit of a choice, there’s patient fear at risks involved in a choice. There’s a lot more communication, which often includes family members, as well.

“There’s the old joke,” Kon said, “where the best choice is made by a committee of three, where two people don’t make it to the meeting.”

But here’s the thing, he said. If you put the time in up-front, patients and care providers could actually establish an understanding that results in brief, informed consultations later, and eventual decisions that go smoothly and clearly, with patients being much happier with their care, and their health.

“In the end, there are a lot of savings of time and emotion. And patients and families are much more satisfied with the decisions,” Kon said.

Shared decision-making is really just a version of informed consent, Kon said.

“And informed consent is not a one time thing,” he said. “It’s a process. Study after study after study shows that this is what patients want from their doctors. If we do this and do it well, people will be much happier. They feel that their doctor was really there for us, that the doctor really cared. And to me, that’s extremely important.”

Maryann O’Sullivan is executive director of a Campaign for Effective Patient Care, a California nonprofit that aims to promote the dissemination of science-based information for patients. She said there are several pilot projects around the state, including a long-running project at UCSF, that explore the dynamic of shared decision-making.

“With the science behind medical treatments constantly evolving, patients should be able to count on being informed about risks, benefits and alternatives when they work with their physicians to make treatment decisions,” she said. “With a vast array of treatment options available these days, it’s not always clear from a medical point of view which option is appropriate for which patient. Informed patients need to be able to take their own values and life circumstances into account in making decisions.”

But sharing how decisions are made does not mean that patients would be saddled with the weight of big decisions, if they’d rather have a physician make more of the choices, O’Sullivan said.

“All of it should be the purview of the patient, that’s the whole point,” she said. “You know the saying, if you don’t want to get a haircut, don’t go to a barber.” That is, patients who want the expertise and judgments of physicians to take higher priority is part of the process.”The idea is to make sure you’re fully informed, and to give you a choice,” she said.Also, she added, many of the procedures that are ripe for shared decision-making are elective — things like stents, back surgery, hip and knee replacements, or hysterectomies. Which means that, sometimes, patients can always decide to wait, then reconsider later if pain increases, for example.

National health care reform includes an effort to standardize that scientific information, to create and certify decision aids.

“We all have to live for a long time with the health care choices we make,” O’Sullivan said. “It’s critical that patients be fully informed when making these choices. To go forward into that without fully understanding, it could be that we live with unpleasant outcomes that we didn’t know about.”

The ending of Kon’s JAMA article sums it up nicely:

“The goal of shared decision-making is to make decisions in a manner consistent with the patient’s wishes. The patient drives the process. Determining where on the shared decision-making continuum the patient feels most comfortable requires clear communication and dedicated time.

“Shared decision-making is often facilitated by a long-standing relationship between the physician and patient, although such a relationship is not compulsory. Active listening skills are essential so that the physician does not inappropriately take too much control nor force patients to bear more of the burden than they wish. Future work should assess patient satisfaction with the shared decision-making process.”

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