What Doctors Cannot Tell You: Clarity, Confidence and Uncertainty in Medicine

In the prologue of What Doctors Cannot Tell You: Clarity, Confidence and Uncertainty in Medicine, Dr. Kevin Jones describes three brief encounters in his medical practice. There is a patient who is referred to a cancer center and immediately panics. There is a sarcoma patient who learns that he might lose his leg. And there is a mother conversing with her child’s doctor, not grasping that all of the planning and protocols in the world may not save her little boy.

In that last exchange, the mother says, "I will do anything for Ewan. He's all I've got. I can follow this protocol to keep him safe."

Dr. Jones listens in silence. He writes that he couldn't bear to crush this parent's belief that she could protect her child: "Yes, I felt this regimen was the best available to manage Ewan's cancer. Yes, more children finishing the treatment course will survive than if not treated. Yes, she and Ewan should stick to the protocol as closely as possible. But obedience alone wouldn't save him. I didn't choose to clarify that critical point. I didn't tell her."

Many people dealing with sarcomas have found themselves in conversations just like these with their doctors. The discussions can be so emotional and difficult that patients later ask themselves, “I wonder what the doctor really said (as opposed to what I heard)? What he was thinking when I was too overwhelmed to respond, and how does he really see my situation? Did I miss something?” And that’s what makes this book fascinating: it gives us a window into a sarcoma specialist’s world, where we can learn what HE thinks as he deals with patients and their families.

Though this book will be of special interest to those who have experienced sarcoma, the author’s goal is to help all kinds of people learn how to understand and talk to their doctors. What we learn is helpful, but it can be unsettling too. The book teaches us how to connect with doctors by understanding the world of uncertainty in which they practice.

People with sarcomas soon learn that they are rare. With time, many come to understand that rare cancers have not been studied as much as more common diseases. Patients who seek out two medical opinions may be surprised to realize that they receive two different diagnoses and recommendations for treatment. This level of uncertainty surprises us and leaves us with questions.

We are surprised because we expect that our doctors’ training and experience has led them to know what they are doing. We are taught that science is about facts and that researchers are uncovering more of those facts every day. A patient asks a question and waits for “the” answer. She has a biopsy and imagines a doctor hard at work, looking through a microscope and studying to find an obvious sign that provides a diagnosis. What the author shows us in this book is that many aspects of medicine, from diagnosis to treatment plans to expected outcomes, are not as clear as many of us think they are.

Jones explains that patients and doctors may even have a different understanding of what is right in many situations. Jones describes the case of a young sarcoma patient whose pain was a symptom of sarcoma that went undiagnosed for a year. Tests were done, but a diagnosis wasn't made until the patient suffered a fracture. Does this mean that the wrong tests were performed? Jones writes:

"The correct test from a physician's point of view will be based on protocols and recommendations for the patient's symptoms. A patient defines the correct test as the one that uncovers the actual cause of the problem she is experiencing. Notice the difference between the two perspectives."

The medical studies and personal experiences that Jones uses to explain uncertainty in medicine are, in some cases, quite dramatic. One of the most memorable passages in the book describes a study done with some of the most prominent sarcoma pathologists in the world. The experts were asked to look at samples of cartilage tumors and make the appropriate diagnosis. I’m not sure what scared me most about the results of this study – the fact that the experts’ diagnoses differed significantly or the fact that the pathologists looked at each puzzling slide for only a minute before pronouncing a diagnosis and moving on. That one minute glance would determine whether a patient has a simple “scoop out” surgery, a complex resection or a life-changing amputation.

Jones admits that sarcoma practice in particular is full of the unknown: "Writing about uncertainty in medicine from the vantage point of a musculoskeletal oncologic surgeon may be not entirely fair. While every practitioner and patient in medicine will necessarily experience uncertainy, my patients and I bathe in it daily."

The effects of this medical uncertainty are enormous. Jones points out that each patient’s treatment is chosen based on a diagnosis, but what if the diagnosis is only a “best guess” and the patient doesn’t even realize that? Treatment protocols themselves are based on medical studies, but new studies may show that the old studies were incomplete or inaccurate. And although screening for cancers sounds like a great way to save lives, the potential errors, medical risks and misdiagnoses that can result from testing “too much” or “too early” can actually be harmful to patients.

This book covers major issues in medical practice, from diagnosis to treatment and prognosis. At the end of each chapter, the author provides summaries of the principles presented in the chapter and questions that patients can ask physicians based on those principles. The overall message of the questions might be summed up as “Ask the doctor what he is not telling you. What is the science behind his recommendation, and what might you be assuming as a patient that you shouldn’t assume?”

While it is unsettling to realize that our doctors don’t have all of the answers, patients and their families will benefit from reading this book. It helps us to understand sarcoma care from the physician’s standpoint. In the book's epilogue, Jones writes:

"Every physician and patient will make judgments of each other and make judgments together of the decisions facing them. I happily judge, uncertain of how I will be judged in return, that facing uncertainty bravely with my patients is much easier than trying to ignore it. When uncertainty remains shrouded in cobwebs and unspoken secrets, the physician suffers alone in awareness of it, the patient suffers alone experiencing it."

Jones shows us how our doctors manage uncertainty in an attempt to save lives, and we learn how difficult it can be for them to communicate what they know (and don’t know) with patients. We learn that some of our expectations are unrealistic, and we learn how to ask better questions.

Because I often interact with sarcoma patients and their families, I plan to return to this book in the future. Keeping Dr. Jones’ experiences in mind will help me to explain the complexities of sarcoma practice to others and encourage them in their communications with their doctors. I imagine that others involved in health support will find this a valuable reference as well.