Cover
THE GOOD DOCTOR
Why Medical Uncertainty Matters
Kenneth Brigham, M.D. and Michael M.E. Johns, M.D.
Seven Stories Press
New York • Oakland • Liverpool
Copyright © 2020 by Kenneth L. Brigham and Michael M. E. Johns
A SEVEN STORIES PRESS FIRST EDITION
All rights reserved. No part of this book may be used or reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without permission in writing from the publisher, except by a reviewer who may quote brief passages in a review.
Seven Stories Press
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Library of Congress Cataloging-in-Publication Data
Names: Brigham, Kenneth L., author. | Johns, Michael M. E., author.
Title: The good doctor / Kenneth Brigham, M.D. and Michael M.E. Johns, M.D.
Description: New York, NY : Seven Stories Press, 2020.
Identifiers: LCCN 2020008106 (print) | LCCN 2020008107 (ebook) | ISBN
9781609809966 (hardcover) | ISBN 9781609809973 (ebook)
Subjects: LCSH: Physician and patient. | Communication in medicine. |
Medicine--Decision making. | Uncertainty.
Classification: LCC R727.3 .B72 2020 (print) | LCC R727.3 (ebook) | DDC
610.69/6--dc23
LC record available at https://lccn.loc.gov/2020008106
LC ebook record available at https://lccn.loc.gov/2020008107
College professors and high school and middle school teachers may order free examination copies of Seven Stories Press titles. To order, visit www.sevenstories.com, or fax on school letterhead to (212) 226-1411.
For every complex problem there is an answer that
is clear, simple, and wrong.
—H. L. MENCKEN
CONTENTS
PROLOGUE
Prologue: What This Book Is About
PART I. Some Basics
Chapter 1: The Doctor You Want (It’s Not Who You Think)
Chapter 2: Uncertainty Is Essential to Personal Health Care
Chapter 3: Finding Your Doctor: A Field Guide
Chapter 4: Where Doctors Come From
PART II. A Few Doctors’ Maladies to Watch For
Chapter 5: The Yes-or-No Obsession
Chapter 6: The Infallibility Illusion
Chapter 7: The “Poor Me” Syndrome
PART III. Some Things That Your
Doctor Should Know
Chapter 8: The Difference between “Facts” and Facts
Chapter 9: Information Is Not Necessarily Knowledge
Chapter 10: The Good, the Bad, and the Ugly of Statistics
Chapter 11: Don’t Believe Everything You Read, No Matter Where You Read It
PART IV. Some Things to Expect from Your Doctor
Chapter 12: Your Story Is Front and Center—Narrative-Based Medicine
Chapter 13: An Expert Escort from Guidelines to Protocols
Chapter 14: The Benefits of Ignorance
Chapter 15: The Laying On of Hands
PART V. Fears and Hopes for the New Medicine
Chapter 16: The Fear of a Tyranny of Experts and Sensors
Chapter 17: The Hope for a Digitally Powered Doctor
EPILOGUE
AN OPTIMIST’S DREAM
SOME OBSERVATIONS ON THE “NEW” MEDICINE
AUTHORS’ NOTE
This book is an inside job. Combined, the authors have spent a century immersed in American medicine as teachers, practitioners, researchers, administrators, and a variety of less well-defined roles. In recent years, we have also been patients with the kinds of issues that come with age and life experience, sometimes trivial and sometimes not. So, we know some things about doctors—what kinds of people they are, why they chose their profession, how they were educated, what drives them, what disappoints them about their job, how they relate to their patients and colleagues, etc.—that we think will interest anyone seeking their services and will help the medical outsider (of course that’s most folks) to choose well. And we’ve seen health care from the other side too. For reasons that will become obvious, we think that some understanding of the human, scientific, and technical intricacies of medicine can smooth out the potential rough spots where health care happens at the interface of the profession with the people it serves.
Uncertainty plays a ubiquitous and critical role in health care, which is why we think that doctors who are too sure of almost anything can be dangerous. The best possible health care means partnering with a doctor who is intimate with uncertainty and not intimidated by it. If this emphasis on uncertainty doesn’t sound as serious as the subject deserves, don’t be misled. There is probably no more serious and challenging issue in all of medicine than coming to grips with this fact. In the medical world, maybe is a pretty serious word.
Our hope is that the reader will come away from this book with a better understanding of doctors, who they are and how and why they do what they do. And most of all, we hope that each reader emerges better prepared to identify the health care setting that is the best possible one for them (hint: they won’t all be the same). That would change health care for the better and possibly save lives.
If by chance you are contemplating a medical career or are a ways down that path already, we hope the book will influence the kind of professional yo u strive to become.
PROLOGUE
What This Book Is About
There are a couple of critical facts about health care that a lot of us—doctors, patients, administrators, managers, insurers, and health systems people—don’t really understand. Because of that, we too often choose doctors for the wrong reasons, doctors who give us less than ideal care in inefficient clinics that are driven by the wrong motives. It doesn’t have to be that way.
One critical fact is that uncertainty is integral to medicine. Uncertainty is the trigger for discovery and discovery is what enables a new future for medicine and health care. Uncertainty also makes medical evidence pliable enough that it can be made to fit the unique person that is each of us.
Another critical and underappreciated fact is that your personal health care is a collaboration. Neither you nor your doctor can do this alone. The best possible health care involves a partnership between two real human beings—your doctor and you—who need to get to know each other; computers are important and will become more so, but they will never be able to do the whole job.
If we, that is the royal we, can understand and act on those two basic facts, we can exploit the scary power of exploding science and technology to make our health care better than it has ever been. But if we ignore the vital role of uncertainty, underestimate the value of the doctor-patient partnership, and count on the technologists to solve the problem, we will not be pleased with the results. And you don’t need the politicians and policy makers to start you on the path to good care. You can begin to nudge things in the right direction by dealing with your personal health care wisely.
This book is an attempt to explore how those two basic facts affect the kind of doctor we think you need to look for and to suggest how to go about finding and relating to such a doctor. There is also some discussion of the effects of these two facts on how new truths are discovered and communicated and how health care is perceived, organized, and carried out. After all, what medical scientists discover, what our society decides to do with those discoveries, and how new truths get translated into medical practice are the ammun
ition that you and your doctor have to help you take on the particular uncertainties in your personal care.
The good doctor never gets too comfortable with accepted dogma. She questions herself and everyone else from the time she begins her medical journey until she’s done. But she’s okay with uncertainty. In fact, that’s maybe one reason she chose medicine as a profession, and it certainly explains her comfort with the essential human ambiguity that practicing medicine keeps forcing her to face. If you want to be as healthy as you can be, this is the doctor you need to get to know.
PART I
Some Basics
CHAPTER 1
The Doctor You Want (It’s Not Who You Think)
Why would you entrust your health care to a doctor who is always looking for alternative explanations, questioning whether the obvious is really true, and wondering whether something important is being overlooked? When you fall ill, you feel a pretty urgent need to be told exactly what is wrong and what to do about it. You want your doctor to give you clear yes-or-no answers that you can believe and act on. After all, the doctor spent all those years learning how bodies work, what can go wrong, and when things go wrong how to get them back on track. And at least since the late nineteenth century when William Osler, the much revered godfather of modern American medicine, took over the reins at Johns Hopkins, medicine has benefitted from the rigor and genius of cutting-edge science and technology.1 With all of that incredible history and the consequent chain reaction of medical discovery that continues to expand, isn’t it reasonable to expect your doctor to be pretty darn sure of what’s causing that cramping pain in your stomach that comes and goes, sometimes waking you up at night, and to either cut it out or give you a pill that will fix it? You don’t want to wait too long to see the doctor, huddled with a dozen other miserable fellow humans, thumbing through old magazines or watching repeating rounds of Headline News stories, just to come away with a list of possibilities. No, you want to come away with a concrete diagnosis and precise therapy. Isn’t that what doctors are supposed to do for you?
Sometimes it works that way. If you have a sore throat, an earache, or fever and a cough, the odds are that you will come away from visiting your doctor with a pretty clear idea of the situation and a specific treatment plan, both of which are likely to be right for you. The same is true if you show up at a hospital emergency room drenched in sweat with crushing chest pain and a falling blood pressure. We have learned an enormous amount about human health and disease in the last century, and so most doctors are even more likely than Dr. Osler was to accurately diagnose and effectively treat a good number of human conditions. Both you and your doctor can feel pretty confident that the right things are being done when the problem is simple and straightforward.
But the problem is not always simple. Rarely that earache which seems for all the world like a run-of-the-mill middle ear infection turns out to be caused by something more serious, like a malignant tumor of the throat. It is hard to be absolutely sure of a diagnosis even when things seem pretty straightforward. In spite of all these years of accumulated knowledge, there is still a lot of uncertainty in medicine.
So who you really want for your doctor is a person who is comfortable with uncertainty, who understands that yes-or-no answers are rewarding when they are true but that sometimes the answer is neither yes nor no. You want a doctor with the courage to boldly declare that the answer is often maybe. When things get serious and the situation complicated, that doctor might be your best chance for continuing to reside on the living side of the great divide, where most of us would like to remain for as long as possible.
Not everyone believes that. If you want clarity and unwavering confidence, there are doctors who are more than willing to accommodate you. There is a persistent illusion of the doctor as an image of authority, keeper of the secrets of life, arbiter of proper behavior. Doctor’s orders carry the weight of implied infallibility. But that attitude is patently contrived, misleading, counterproductive, and risky.
So if your choice is between a doctor who is absolutely sure about your condition and one who equivocates a bit, we advise choosing the latter; the other one either doesn’t understand the situation or is deceiving her- or himself or you or both. It’s the maybes, the universe of possibilities, in medicine that make room for dealing with the infinite variations on the theme of humanness—what Dr. Seuss calls the you that is You.2 Ambiguity is a real advantage when making life and death decisions that affect real, as opposed to statistically created, theoretical people. The doctor who is in touch with the ambiguities is likely to integrate the known facts with all of the other available information about you as a unique individual before deciding on a diagnosis and treatment; that doctor is more likely to get it right.
The good doctor’s brain bristles with the vast storehouse of relevant medical knowledge, what is, but the door to her mind is always ajar, open to the even vaster world of what might be. She knows above everything else that the rapidly expanding body of medical knowledge, at its most certain, is abstract and that the reality of health care is each of the flesh-and-blood human beings patiently waiting for her help in an office exam room. She knows that we are all different, and she can approach each of us with confidence because she understands that what is known in medicine, the evidence, must be applied to each unique person in her care. She knows that how certain she can be that the available evidence fits a particular patient varies with both the nature of the evidence and the nature of the patient and that the uncertainties are where her tailoring skills can improve the fit.
Michelle Roper (not her real name) knows, from personal experience, the difference between a doctor who is satisfied with the obvious and a doctor whose mind is open to other possibilities.3 Ms. Roper was thirty-five years old when she showed up in the medical clinic at an elite academic medical center with a chief complaint of, “I think my lung has collapsed again.” When asked what she meant by “again,” she recounted that her lung had collapsed several times over the previous year, sometimes requiring that a tube be put in her chest to get the lung to re-expand. Although she had always recovered without too much trouble, she knew that a collapsed lung could be serious, even life threatening, and she really didn’t like the fact that the problem kept recurring. She lived in constant fear that the next one might be fatal. Her doctor must have thought, hmm . . . it isn’t too unusual for a young woman’s lung to collapse once, but it shouldn’t keep happening over and over . . . maybe there is more to this story.
Ms. Roper was generally in good health except that she was being treated by her gynecologist for endometriosis—a condition where small islands of tissue like that which lines the womb wind up somewhere else, usually on the lining of the abdominal cavity. At the time of menstruation, these little islands slough off some of their cells and bleed into the abdomen, often causing severe cramps.
Ms. Roper was breathing too fast and said that she had a sharp sudden pain on the right side of her chest and got suddenly short of breath several hours earlier. When asked whether she was menstruating, she said that her period had started on the previous day, but wanted to know why that was important; no one had asked her that question when her lung had collapsed before. The doctor replied that, while he had never personally seen such a case, he had read that sometimes endometriosis could implant those islands of womb tissue on the covering of the lungs. At menstruation, when the tissue sloughed off some cells, it could make a small hole in the lung that would let air leak out into the chest and cause the lung to collapse, a condition called catamenial (from Greek for monthly) pneumothorax [air (pneumo) in the chest cavity (thorax)]. After getting her lung re-expanded, Ms. Roper was treated with hormones to suppress her menses and had no further difficulty with her lungs.
When her doctor was making rounds one day while Ms. Roper was in the hospital, she volunteered, “You know, my sister says that during her periods she always gets pain in her chest and fe
els short of breath. I wonder if she has the same thing.”
The doctor smiled, remembering William Osler’s admonition to “listen to the patient; he is telling you the diagnosis.”4 Ms. Roper’s sister was asked to come to the clinic at the time of her next menstrual period, and when she did, a chest x-ray showed a partially collapsed lung. The experience resulted in a report in the literature of the only known cases of two members of the same immediate family with menses-
associated lung collapse (familial catamenial pneumothorax).5
A collapsed lung is not a rare occurrence and the reason for it is almost never found, so the accurate diagnosis is usually spontaneous pneumothorax. Ms. Roper’s earlier doctors had the right diagnosis, pneumothorax, but they failed to recognize the distinctly rare underlying cause. Her pneumothorax was not at all spontaneous. By listening to the patient and thinking of unusual possibilities, a more inquisitive doctor discovered not only the root cause of Ms. Roper’s problem, but that of her sister as well.
The myth of the infallible doctor has worn out its welcome. The traditional authoritative doctor-obedient patient arrangement no longer serves to make us healthier. The truth is that the doctor isn’t always right and the patient always brings critical information. What we need is an equal partnership between the person seeking medical care and a doctor who knows and thoroughly understands the current data and as a result, has a firm grip on the uncertainties. Expectations need to change. The public and the profession should understand that uncertainty is integral to medical practice and is an essential good that allows your doctor to deal effectively with you. Maybe even save your life!
But how could uncertainty save your life? Isn’t the goal of medicine to understand health and disease so thoroughly that the doctor can rely on scientifically proven facts to arrive at a certain conclusion about what you have and what to do about it? And, if we aren’t quite there yet, aren’t we close enough that uncertainty will be the exception rather than the rule?
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