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Preface

The sun was shining on a crisp day in March 2014 as I headed for a meeting at the State Department. After parking my car in a nearby garage and walking just a few blocks, I began having trouble breathing. Because I was a runner, I was perplexed to find myself out of breath. I rested for a few minutes and then proceeded to my meeting. That was Friday. On Monday, I went to see my doctor, who said, “I’m not sure what is wrong, but you need to go to the emergency room.” I told her I had some meetings later that day but could work in a visit on Tuesday. My doctor said, “No. I mean now, not tomorrow. We have two world-renowned hospitals within a few miles of my office. Pick one and drive there.”

I chose the hospital where my son was born, and it was a good decision. When I arrived at the emergency room later that morning, I waited for less than an hour. A nurse interviewed me, and the doctor decided to give me an EKG to check out my heart. The results came back quickly, and the cardiologist on call said,

“Your heart looks fine. Go home and rest.”

“No. I need to know what is wrong,” I responded.

The doctor took another look at my files, asked me some more questions, and said, “I really don’t see a problem; I am releasing you.”

“No,” I responded. “I will not leave until you can offer me some alternative hypotheses for what is wrong with me. I also want to discuss what assumptions you are making and whether they are valid.”

The cardiologist was not used to patients making such arguments, but realized he was talking to a career CIA analyst who had written books on critical thinking and Structured Analytic Techniques. So, he relented and admitted me for an exploratory procedure the next morning. He said I had “worn him down” to the point he would authorize the procedure despite a mild risk factor. He said he was “90 percent certain” they would find nothing wrong on Tuesday.

My wife came to visit and asked a nurse if she should arrange for my son to drive my car home. She was told by the nurse that the procedure was scheduled for late morning and that I should have no problem driving myself home later that afternoon because I would be awake during the entire procedure and could even watch it on a computer screen.

They did the procedure Tuesday morning, but I did not go home that day. Instead, I was scheduled for major surgery Wednesday morning. Because of that surgery, I am alive today.

Why This Book?

I was a victim of medical misdiagnosis, and I am in good company. According to a report issued in 2015 by the Institute of Medicine, an arm of the National Academy of Sciences, as many as twelve million Americans may be receiving erroneous or late diagnoses every year.1 This is far more than the estimated hundred thousand deaths per year attributed to errors in hospital treatment. Moreover, the error rate for diagnosing illnesses is likely to worsen as the diagnostic process and health care delivery become more complex.

I began my search for a diagnosis when I started having trouble breathing while running in 2010. It took five years before I finally got a diagnosis following my visit to the emergency room. Over that five-year period, I sought and received treatment from a dozen doctors representing six different specialties—all of whom failed to identify what was causing my problem. I asked many questions during that time and learned a lot about how poorly—and at times, how well—the medical care industry functions in the United States. I condensed these experiences into sixteen actions you can take to improve the quality of your health care:

• Five questions you should always ask your doctor.

• Five obstacles you should expect to encounter.

• Six tips for increasing your chances of getting a solid diagnosis and receiving timely treatment.

I was very lucky. My hope is that people will read this book and live to tell their stories because they applied some of the lessons I learned during my journey.

Design and Content

The book is organized into five chapters with an epilogue and appendices that provide step-by-step instructions for using the techniques:

• The first chapter tells my story, beginning with when I began to detect a serious problem and ending with my emergency hospitalization for major surgery.

• The next three chapters present the key lessons I learned over five years of seeking a diagnosis, learning the value of asking particular questions, anticipating obstacles, and taking advantage of tips.

• The last chapter reveals the correct diagnosis and why I am lucky enough to be here today to write this book.

• The epilogue emphasizes the need to be your own health care advocate.

• The appendices provide step-by-step instructions for how to use six structured techniques that can be applied to most health issues you are likely to confront in daily life.

Interspersed throughout the book are short anecdotes that offer both positive and negative illustrations of each lesson.

Most of the anecdotes were obtained from members of the “5 percent club”—or their close relatives. The 5 percent club is named for those who fall outside two standard deviations of a normal population:

• The lucky members of this club have experienced challenges in getting their conditions correctly diagnosed, took direct responsibility for dealing with their condition, and lived to tell the tale.

• The unlucky members—probably the majority—first tried the standard treatment. When that failed, they tried a second or third treatment. When that failed, they died without ever receiving the correct diagnosis and treatment.

This book contends that people who experience medical problems and recover fall within two standard deviations, or 95 percent, of the area under a standard bell curve (see Figure 1). This is because they self-heal or two or three common treatments cure the problem. However, 5 percent of the population may have more complicated issues, requiring a more thorough diagnosis.