Patients never used to worry about making healthcare decisions. They didn't have to. Their doctors made just about all of their decisions for them. Everyone simply assumed that doctors knew what was best.
But that paternalistic view of doctors as know-it-alls has gone by the board, says Dr. Clarence Braddock, vice dean for education at the David Geffen School of Medicine at UCLA. "Now doctors are seen as the experts on medical information and choices," he explains, "but patients are seen as the experts on what those choices mean in their own lives."
The upshot? Doctors still make decisions sometimes, but sometimes patients make them, and sometimes doctors and patients make them together. Doctors and bioethicists are engaged in a vigorous debate about the relative merits of these various approaches. Meanwhile, you may want to consider which suits you best as a patient.
Your doctor is still the boss of you: Doctors make the decisions, but they also give patients a good rundown of their situation, answer questions and explain treatment options. The difference between this approach and the old one, then, is simply that patients are more informed. But that may be significant. Research has shown that the better patients understand doctors' instructions — why they're important, how they're supposed to work — the better the outcomes for patients, quite possibly because they're more likely to comply.
In a 2005 study at Baylor College of Medicine in Houston, researchers interviewed 53 doctors in Texas, Louisiana and Maryland about how and why they went about making clinical decisions, and most of them reported taking this approach. One cardiovascular surgeon said, "Usually I had a recommendation. I felt that was my job." Then, he added with a laugh, "I didn't go through 16 years of study to let people make their own decisions." Similarly, a pediatrician said, "Pretty much you always have to ultimately make a decision because that's what they came to you for."
Pros and cons. Some argue that this approach still gives too much power to doctors and not enough to patients. But others observe that many patients prefer not to make decisions themselves, thank you very much, and for them this approach works well. "People want to know what's going on, but that doesn't necessarily mean they want to make the decision," says Dr. Carl Schneider, a professor of law and internal medicine at the University of Michigan who has written about decision-making in "The Practice of Autonomy."
Patients call the shots: Again, doctors inform patients about their situation and options, but this time patients, not doctors, decide what to do.
As one internal medicine specialist in the Baylor study said, "The ultimate decision is the patient's…. You look at their medical condition, you know, present the options to the patient and then have the patient decide."
Pros and cons. Many contend that in this case it's patients who have too much power and doctors who don't have enough. "It's a consumerist model," says Dr. Douglas Opel, an assistant professor at the University of Washington School of Medicine. "It essentially relegates the doctor-patient interaction to a commercial transaction. The role of the doctor is to simply provide factual information, and the role of the patient is to choose what he or she wants from the menu provided."
Under this model, the argument goes, patients cannot take full advantage of their doctors' knowledge and experience. Patients will rarely have as much insight into the medical aspects of a decision as their doctors do.
Not to worry, others say. Patients may think they're making their own decisions, and doctors may even want them to, but that isn't what actually happens.
He cites this example: A doctor might ask an elderly patient, "If you stop breathing, and your heart stops beating, do you want us to try to revive you?" The answer might well be yes, Schneider notes. But the doctor might think the patient deserves more information about what would be involved — her brittle bones might break, her survival chances might still be almost nil — and simply by giving the patient this information, the doctor might very possibly influence the patient to answer no.
"Doctors are stuck in the position of knowing how easy it is to influence patients and how necessary it is to inform them," Schneider observes.
But if some see paternalism in the subtle influence doctors may exert over patient decisions — and consider it a plus — others see paternalism in the way doctors may refuse to influence patient decisions — and consider that a minus. If a doctor leaves a decision to a patient, and the patient tries to pass it back like a hot potato, some doctors refuse to take it. But Schneider says that's unfair. "It can actually be paternalistic to make patients make decisions," he believes. "Patients feel about making decisions the way I feel about fixing my car or my dishwasher. You can't dump information on people and expect them to make a decision, any more than you can expect them to read their iTunes contract from beginning to end. A lot of it is respecting a patient's right not to make a decision."
Doctors and patients collaborate: In this approach, so-called shared decision-making, they analyze situations together to reach a decision that both parties are satisfied with. "It's a dance, a back-and-forth," says UCLA's Braddock.
Pros and cons. Braddock himself believes shared decision-making should always be used except when public health issues are at stake. Still, he acknowledges that it can't work well unless both doctors and patients make an effort to overcome certain inherent obstacles. "There's a power differential in the patient-doctor relationship. Patients don't know as much, and they can feel a sort of deference to the doctor." So, Braddock advises, patients need to prepare strategies (e.g., make lists, bring a supportive friend) to ensure that they manage to ask all their questions and make all their points.
For their part, doctors need to be receptive to what their patients have to say, and, unfortunately, Braddock adds, not all of them are.