April 14, 2017

Cleveland Clinic docs: Why informed consent isn't really so 'informed'

Daily Briefing

    The process by which patients provide informed consent for a doctor's preferred course of treatment is "commonly not-so-well informed"—but it could be significantly improved if patients followed seven simple steps, two physicians write in the New York Times' "Well."

    Mikkael Sekeres, director of the leukemia program at the Cleveland Clinic, and Timothy Gilligan, director of coaching at the Center for Excellence in Healthcare Communication at the Clinic, write that ideally, doctors should provide patients with a thorough overview of the risks presented by medical treatments. Doctors might inform you, for instance, that they "need to crack your chest open to repair your damaged heart valve, and for that to happen you'll need to undergo anesthesia from which you may never wake up," the authors write.

    But in practice, doctors frequently don't share such a blunt assessment. While many patients sign documents affirming that the understand the risks of a procedure, doing so doesn't actually mean they understand the risks, Sekeres and Gilligan write. A better process, they say, might involve making patients answer questions to make sure they are truly informed.

    Barriers to a productive discussion

    According to the authors, part of the problem is a tacit collusion among doctors and patients to water down the informed consent process. Patients, for instance, might think their questions will make a doctor impatient, or they may want to let doctors handle the difficult task of risk assessment and avoid the scary details of potential complications. Doctors, on the other hand, are happy to cover themselves legally and quickly move on to other things, Sekeres and Gilligan write.

    These problems are exacerbated in medical research, when the risks of treatment are even more complex. Patients might be asked to sign a 25-page document outlining the trials risks, financial terms, and other issues. But as Sekeres and Gilligan put it, "When is the last time you read a 25-page document from beginning to end?"

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    For the most part, doctors do have patients' best interest at heart, Sekeres and Gilligan write. But in some cases, it may be very difficult to explain a treatment's risks even if doctors wanted to. "How can we explain to you the experience of having your chest cracked open, or what it feels like when you go through chemotherapy?" Sekeres and Gilligan write.

    Steps for patients

    Sekeres and Gilligan propose seven steps that patients can use to help doctors "do a better job of informing you," including:

    1. Asking doctors to use common words and terms instead of complex medical jargon;
    2. Summarizing for doctors what you have heard them explain;
    3. Asking for written materials, pictures, or videos to help you understand a treatment's risks;
    4. Requesting that doctors provide best-case, worst-case, and most likely scenarios;
    5. Asking to talk with another patient who has undergone the treatment in question;
    6. Looking into alternative treatment options; and
    7. Taking notes to refer to later.

    "We've seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome," Sekeres and Gilligan writes. "We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care" (Sekeres/Gilligan, "Well," New York Times, 3/1).

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