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What our doctors tell us and what we hear are often two different things

Even when we think we’ve made an informed decision about a medical treatment, our decision may be based on what we wanted to hear from our doctor, not what our doctor actually told us.

That’s the gist of an article in today’s Boston Globe. The informed consent process, writes reporter Elizabeth Cooney, isn’t always as straightforward as we think it is:

A study led by Dr. Michael Rothberg of Baystate Medical Center in Springfield found that heart patients believed stents would prevent heart attacks and death when research tells us — and their cardiologists told them — that the tubes that open clogged coronary arteries can only relieve chest pain. Another study from Massachusetts General Hospital, based on a national survey, concluded that people considering serious decisions about knee replacements, prostate cancer tests, and long-term use of medications such as cholesterol-lowering statins did not hold a balanced picture of the consequences of their choices.
“Across the board, people often just didn’t have a good sense about what the pros and cons were. They tended to hear more about the pros than the cons,’’ said Dr. Michael Barry, senior author of the study. A primary care physician at Mass. General, he also leads the Boston-based Foundation for Informed Medical Decision Making. “That probably fits the American psyche about preferring action to inaction. … Patients often have an exaggerated view of the benefits.’’

The fault doesn’t always lie with patients, however. Doctors often emphasize a treatment’s pros over its cons. Reports Cooney:

[T]he [treatment] discussion takes place in a health care system that pays far more for doing a procedure than figuring out if it’s the right thing to do. If physicians make most of their money doing procedures, said Dr. Alicia Fernandez, a professor of medicine at the University of California, San Francisco, who has studied informed consent, “It’s kind of hard to say to the patient, ‘By the way, you would do just as well if you don’t get it.’ ’’

Patients need to take an active role in their medical care, says Cooney, which means researching your treatment choices yourself (not always easy for even the most educated and Internet-savvy person) and then raising all those choices with your doctor. Take along a trusted relative or friend who will listen closely to what the doctor tells you. Ask that person to take notes that you can review later.

Some experts, Cooney reports, recommend that patients be given educational DVDs that describe all the pros and cons and alternatives to various treatments. Patients could watch the videos at home, take notes, and then return to their doctor with questions.

My concern about these DVDs: Who’s going to prepare them? Unless they are written and produced by truly evidence-based independent sources, treatment biases will slip in. And even if such independent sources — say,  the U.S. Preventive Services Task Force or the Cochrane Collaboration — were used to inform the content of the DVDs, I suspect they would be vehemently opposed (patients would be told to ignore them) if they go against long-held practices that have benefited vested interest groups. (Case in point: the ugliness last fall around the USPSTF’s recommendations concerning breast cancer screening.)

Still, videos have been shown to help people with one difficult medical decision, reports Cooney:

[One study] researched using video to help patients make decisions at the end of life, comparing visual versus verbal-only explanations of care choices among advanced brain cancer patients in one study and people facing advanced dementia in another. Patients who saw videos were more likely to choose comfort care over life-prolonging measures than other patients who just heard their doctors describe the two options. They also said they understood their choices better when they could see them.

You can read Cooney’s article here.

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