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The [first doctor] never asked me what I wanted. He did not mention my needs or treatment goals. He did not know—or seem to care—that my hope was to extend my quality time on this planet rather than merely linger. He did not care about the toll of the treatments on my body and my remaining days …

Thank goodness my [second doctor] was not like that specialist. Instead of ignoring my wishes and goals, my doctor was embracing them and keeping me as informed as possible. She'd discussed the diagnosis, prognosis, and possible treatments, and she'd asked me about how I wanted to proceed. Together, the two of us chose a treatment regimen that would slow tumor growth, while protecting what was precious to me: my quality of life. Too many other patients have doctors like that [first] specialist. A cancer-survivor friend told me that her oncologist once said, “I wish I could just treat the cancer; patients get in the way.” Another friend, with stage IV cancer, was advised by her oncologist to skip a three-hour car ride to visit her new granddaughter because she'd miss a chemo appointment— one that would do nothing to change the fatal nature of her advanced disease.

—Amy Berman, RN1

The gap between the way many patients wish healthcare decisions could be made and the way these decisions are actually made is tremendous. According to a 2014 survey conducted by the Altarum Institute, nearly all patients expect to be in control of medical decisions. Only 7% of adult, nonelderly patients wanted their physicians to be in the lead role.2 Despite this clear preference, the same survey found that the vast majority of patients let the doctor take charge of care decisions nonetheless.

Among the many complex factors that go into medical decision making, there is a widespread perception that the values of patients often get pushed to the bottom. Patient experience (a term that is increasingly replacing the more narrow term patient satisfaction) is a core component of delivering value-based care. As we have mentioned many times in this book, defining value as a ratio of physical outcomes to costs is too simplistic. At the end of the day, care that improves some health outcomes while ignoring a patient's treatment goals or putting her through a miserable experience may not be worth it. And yet, meaningfully involving patients in our decisions is a goal that continues to frequently evade our profession.

There are surely many reasons for this, but Dr Alvan Feinstein, a Yale physician credited with helping to start the field of clinical epidemiology, hit the nail on the head when he pointed out the great irony of what clinicians often consider “hard” vs “soft” data: “A doctor's observation of whether the patient has tenderness in a knee is regarded as objective and is ...

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