CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of K. Kimberly McCleary

September 2007

How Doctors Think
I read a very good book last week while I was away with my family—How Doctors Think, by Jerome Groopman, M.D. Although I didn’t find the term “chronic fatigue syndrome” once in its pages, it taught me a lot about why it’s been so challenging to get doctors to embrace CFS. It was also helpful in thinking about how to answer a question that I am frequently asked, “How do I find a good CFS doctor in my area?”

Dr. Groopman, a renowned hematologist/oncologist, writes for his peers and for people like you and me. He holds an endowed chair at Harvard Medical School and is on staff at The New Yorker magazine. His points are well-researched, but his writing style is clear and conversational. He blends case studies with interviews, his own experience with studies documented in the literature.

The point of the book is to help patients—individuals who seek medical services—get the kind of care they deserve from professionals who have become (in Groopman’s view) overly reliant on high-tech tests, evidence-based guidelines and one-size-fits-all algorithms. The influences of institutional dogma, egotism, managed care and pharmaceutical marketing on doctors’ practices are discussed, too. He closes the book with a chapter advising patients how to participate in “informed choice” (as opposed to informed consent) and to appropriately communicate with their doctor(s). That chapter alone was worth the time and money invested in the book, on both a personal and a professional level.

According to the material presented by Groopman, CFS represents everything most doctors dislike about treating ill patients. Routine tests come back mostly normal. Fancy ones show little or yield unusual (but not overtly abnormal) results. The standard arsenal of treatments produces uneven or unremarkable outcomes. (Groopman explains that most physicians routinely prescribe just two dozen drugs; page 219.) The patient comes back visit after visit with a new pattern of symptoms, or even worse, the same symptoms that haven’t improved. Lots of time is required to ask and address questions, with few high-dollar procedures for which to bill the insurance company at the end of the frustrating visit.

Worst of all, according to Groopman research has shown that “doctors tend to like healthier people more . . . Many doctors have deep feelings of failure when dealing with diseases that resist even the best therapy; in such cases they become frustrated, because all their hard work seems in vain.” This doesn’t bode well for CFS patients who, of course, are very ill (even though they may look pretty well).

One take-home message from this book is to seek the care of a physician who will think “outside the box” about you and your condition (whether it’s CFS or something else) and who will actively engage you as a partner in your care. Assuming that standard professional qualifications have been met, the prestige of a doctor’s training, society awards or “best of” listings are often less important than how she interacts with and thinks about her patients. What kinds of questions does she ask, and are they open-ended or either/or questions? Do you get time enough to answer her questions before you get cut off? (Research shows that physicians interrupt patients within 18 seconds of when they begin telling their story; page 17.) Does she watch the clock? Does she pay more attention to the computer screen or handheld tool than the person on the examining table? Is she willing to explain the reasons for recommending a particular test or course of treatment? Is follow-up planned as part of every visit until the problem is resolved or reasonably well-managed?

For those of you who don’t have access (or much access) to the limited number of CFS experts, consider an alternate approach to finding a doctor to help you manage your illness. Identify the personality traits that suit you best—some of us prefer direct and formal interactions while others like warm and personable types—and look to match them. Seek an open, curious mind not wedded to old paradigms and doctrine based on published evidence alone—someone who will accept credible information you provide about CFS. Look for someone who takes a genuine interest in you and your experience, not just what somebody else has written on your chart. Find someone who asks the right questions and listens carefully to your answers. Search out someone who ascribes to Dr. Groopman’s philosophy of care, which he describes this way:

My patient or her family member, who seeks to know what is in my mind and how I am thinking, can help improve my thinking with a few pertinent and focused questions, protecting me from the cascade of cognitive pitfalls that cause misguided care. And by opening my mind, I can more clearly recognize its reach and limits, its understanding of my patient’s physical problems and emotional needs. There is no better way to care for those who need my caring. (page 269)

The practice of medicine is an art, as much as a science, and Dr. Groopman restores faith that there are still doctors out there whose communication skills are as important to them as the high-tech tools they may use to supplement their intuitive and cognitive abilities. He also offers us communication tools to help transform the traditional patient-doctor relationship to a mutually respectful partnership and to identify clinicians who will be most receptive to this style of interaction. Until the nationwide network of compassionate CFS-savvy physicians exists, these may be important tools for us to master.

Kim McCleary
President & CEO
The CFIDS Association of America

For more information about How Doctors Think and other books by Dr. Groopman, please visit www.jeromegroopman.com.

Learn more about how the CFIDS Association is raising CFS awareness in the medical community. See “Educating the Medical Community.”