When patients get to decide

The research on whether or how consumers want to be involved in treatment is mixed, and there is no consensus on a systematic approach. Many are advocating a more formal approach to what is called shared decision-making. The American Medical Association, the American College of Critical Care Medicine and the American Academy of Pediatrics all endorse that model.

Shared decision-making means informing patients of the risks and benefits of various treatments or services when there is more than one option. Ideally, the patient carefully considers the alternatives in light of personal preferences and agrees on a course of action with the physician.

Medicine will have to change its traditionally paternalistic culture of care if it is to become more participatory. The patient-doctor encounter is not an ideal venue for joint decision-making. The physician and patient have unequal positions, and the patient is in a compromised physical and mental state. The physician, under pressure to generate revenue, is in a hurry.

Patients make a large number of medical decisions annually. More than 80 percent of adults over age 40 have made a decision about a surgery, new medication or screening test in the last two years. More than half had to make two or more of these decisions. About one-third of these decisions, in turn, have two or more treatment options. When faced with options, about 70 percent of uninformed patients say that doing what the doctor recommends is important.

When the patients become involved, things change. One study found a 20 to 30 percent reduction in aggressive treatment. This suggests that informed patients are more conservative than their health-care providers are. There are other benefits: better quality of care, increased satisfaction for the patient and provider, and improved self-esteem.

Wennberg and his colleagues interviewed patients who had undergone hysterectomies. It was clear that patients considered depression and decreased sexual drive to be important surgical outcomes – neither of which their physicians seemed to acknowledge.

In another study of treatment for benign prostate enlargement, symptoms were the driving force in patients’ decisions. Only 11 percent with moderate symptoms and 22 percent with severe symptoms chose surgery. Most were more concerned about potential impotence because of surgery than whether they would have to live with their condition. For most physicians, by contrast, symptom relief is a major priority.

The paternalistic approach to health care often violates a basic ethical principle of patient autonomy. Patients should be given enough information about their conditions and treatment options to make informed decisions.

A study of nine common medical decisions, such whether to have cancer screenings and whether to prescribe medication to alleviate a condition, found that U.S. patients were not well-informed. The research also showed that physicians tend to stress the advantages of the treatments they recommend rather than the disadvantages or risks. They also were unlikely to ask patients which treatment they would prefer.

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