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A blank stare // An angry response that it's your job // A willingness to work together to determine what's truly best?

Shared Decision Making: On the Same Page

By Courtney Humphries // Photographs by Peter Hapak // Summer 2013
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Doctor and patient

Peter Hapak for Proto

It takes only a few hours to have an implantable cardioverter defibrillator (ICD) placed in your chest. During the procedure, which may be performed under local anesthesia and a sedative, the programmable, shock-generating device is tucked near your collarbone with electrical leads snaked through a vein to reach your heart’s right ventricle. An ICD can deliver either paced beats or electric shocks to control irregular heartbeats, including those that might lead to sudden cardiac death.

Yet while having an ICD in your chest may save your life, it also complicates it. You won’t know when or whether you’ll receive a shock, and the sudden jolt can be painful. Some people with ICDs have reported anxiety or depression.

Is it worth it? That may depend on your health, your temperament and how an ICD compares with alternative treatment options—considerations you might expect to go over carefully with your doctor. But a study published this spring in JAMA Internal Medicine revealed that such conversations are often cursory. Researchers asked 41 patients what they recalled about their communication with their doctors. Eighty percent didn’t remember discussing long-term consequences or post-surgery risks, and some weren’t aware that the devices occasionally malfunctioned. Many patients felt the decision had been rushed, says lead author Paul Hauptman, a cardiologist at Saint Louis University.

For a second part of the study, the researchers recruited 11 cardiologists to evaluate two “patients” (actors following a script) who qualified for an ICD. Most physicians focused on explaining the devices and the surgery, while few mentioned quality-of-life issues or long-term consequences. Many laced their explanations with medical jargon.

In a commentary on the study, Grace Lin, a physician and health policy researcher at the University of California, San Francisco, wrote that it “adds to the growing body of evidence that there is inadequate communication and little shared decision making occurring for situations such as ICD surgery.”

Increasingly, there’s a notion that medical decisions should be shared, particularly when patients may have more than one reasonable option. In “shared decision making,” as it has come to be called, physician and patient work together to select tests or therapies, considering not only medical evidence but also what patients want. Some might choose to have an ICD implanted if there is even a small chance they would benefit, while others could prefer to avoid the anxiety of having the device in their chests. Still others might have trouble understanding the full implications of the choice no matter how well it was explained to them. But the point is to make every effort to give the people who bear the consequences of health decisions a say in making those choices.

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1. “Shared Decision Making—The Pinnacle of Patient-Centered Care,” by Michael J. Barry and Susan Edgman-Levitan, The New England Journal of Medicine, March 1, 2012. “Patient-centered care” is often held forth as a goal of modern health care; this editorial argues that implementing shared decision making is necessary to make patient-centered care a reality. 

2. Patients’ Preferences Matter: Stop the Silent Misdiagnosis, by Al Mulley, Chris Trimble and Glyn Elwyn, The King’s Fund, 2012. This report argues that misdiagnosing patients’ preferences is akin to misdiagnosing a disease and challenges the U.K.’s National Health Service to curb the problem. 

3. “Engaging Patients in Health Care Decisions in the Emergency Department Through Shared Decision-Making: A Systematic Review,” by Darren Flynn et al., Academic Emergency Medicine, July 2012. Shared decision making has made inroads in elective surgery and screening decisions but is now moving to acute and emergency settings, as this review demonstrates.

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