In the following chapters, we discuss in more detail some doctors’ behaviors to be wary of. You best recognize those behaviors early on and if they persist, you should probably look elsewhere for your care. However, having encountered such a physician and having decided to look elsewhere, the basic requirement for honesty demands that you say so. The same is true if you visit a different doctor, even if you return to the original one. There is the practical matter of sharing any information (tests, history, medicines, etc.) among the doctors who are caring for you, as well as the ethical demand that you come clean about what you are doing about your health care. Even a seemingly incorrigible doctor may learn something from your experience. If not, at least you tried.
So, your doctor should approach your care fully aware of and completely comfortable with the ambiguity that is inherent in your condition as a human being. The persisting kernel of empathy that still motivates her will respond to your behavior as a responsible patient. But, if this collaboration is to keep you as healthy and happy as possible, there has to be more to it. There is the potential for a mixed message as we advocate practicing evidence-based medicine while stressing how important it is to tolerate ambiguity. What is ambiguous about a practice that is driven by the evidence? Well, two things must be obvious by now: the evidence, even when it exists, may be ambiguous; and applying the evidence to a single unique individual (i.e. you) is never as simple as looking it up on the internet. There is still a lot that neither you nor your doctor knows. Things will go much better if you get that fact on the table.
In 2014, TEDMED (the branch of TED talks dealing specifically with medicine) convened to discuss “Why physicians should admit what they don’t know.”43 A couple of quotes from that program bear repeating.
Elizabeth Nabel, a cardiologist who is now president of Boston’s Brigham and Women’s hospital, admonished doctors to “Have the courage to say, ‘I don’t know,’ because it’s empowering. And only then can you add, ‘I’m going to find out.’”
Geneticist and director of Baylor University’s Center for Medical Ethics and Health Policy Amy McGuire marveled at the power of genetics to give you the code to your existence, but recognized that not all of the answers are there. “There is no genome for the human spirit,” she said.
Thinkers have recognized forever how thoroughly ambiguity permeates the human condition. “Nothing in life is certain,” mused Ben Franklin, “except death and taxes.”44 Scottish poet Robert Burns says, “There is no such uncertainty as a sure thing.”45
We could fill the book with quotes of this sort that are as relevant to medicine as to other life experiences. A thoughtful doctor knows that. But let’s look more closely at some doctors who don’t. Recognizing them could save us some time and trouble.
Danielle Ofri, MD, “Why Would Anyone Choose to Become a Doctor?,” The New York Times, July 21, 2011.
Else Frenkel-Brunswik, “Intolerance of Ambiguity as an Emotional and Perceptual Personality Variable,” Journal of Personality 18 (1949): 2-143.
Gail Geller, ScD, “Tolerance for Ambiguity: An Ethics-Based Criterion for Medical Student Selection,” Academic Medicine 88 (2013): 581-584.
Gail Geller, Ruth R. Faden, and David M. Levine, “Tolerance for Ambiguity among Medical Students: Implications for Their Selection,Training and Practice,” Social Science & Medicine 31 (1990): 619-624.
Gail Geller, Ruth R. Faden, and David M. Levine, “Tolerance for Ambiguity among Medical Students: Implications for Their Selection,Training and Practice.” Social Science & Medicine 31 (1990): 619-624.
Bella English, “At MGH, Schooling Doctors in the Power of Empathy: Center Draws Praise for a Basic Idea with Huge Effects,” Boston Globe, August 16, 2015.
Susan Matthews,“10 Easy Ways to Improve Your Relationship with Your Doctor,” Everyday Health, April 10, 2014, http://www.everydayhealth.com/news/easy-ways-improve-relationship-with-doctor/.
“Patient Rights,” UT University Medical Group, http://www.utprimarycare.org/patient-rights/.
Timothy Judson, Kevin Volpp, and Allan Detsky, “Harnessing the Right Combination of Extrinsic and Intrinsic Motivation to Change Physician Behavior,” Journal of the American Medical Association 314 (2015): 2233-2234.
“Why Physicians Should Admit What They Don’t Know: TEDMED 2014, AMA Wire, Sepember 10, 2014, http://www.ama-assn.org/ama/amawire/post/physicians-should-admit-dont-tedmed-2014.
“Benjamin Franklin Quotes,” BrainyQuote, http://www.brainyquote.com/quotes/quotes/b/benjaminfr129817.html.
“Robert Burns Quotes,” BrainyQuote, http://www.brainyquote.com/quotes/quotes/r/robertburn182938.html.
PART II
A Few Doctors’ Maladies to Watch For
. . . And Why
CHAPTER 5
The Yes-or-No Obsession
There is no gray zone in this doctor’s medical world; she deals exclusively in black and white. An unexplained abnormal test result or physical finding just drives this doctor crazy. There has to be an explanation and, by damn, she’ll find it no matter what it takes. She either doesn’t know or doesn’t care that abnormal test results and physical findings can mean very different things in different people. This doc is a pretty concrete thinker—she doesn’t truck much with individual idiosyncrasies.
The normal range of values for a test is a statistical definition; the usual boundaries are the 95 percent confidence limits. That means that five percent of normal people will have a lab test number that is defined as abnormal. But you will be wasting your time to try to convince this doctor that you’re one of the five percent. “Unlikely,” the doctor will mumble while filling out an order for yet another test.
Here is an example. Sixty-six-year-old Hermione Barcrand (not her real name) went to a university general medical clinic to get something for a nagging bad cold.46 She happened to see a lung specialist who also spent one session a week in the general medicine clinic. A chest x-ray was ordered and there was a large and troublesome shadow on the x-ray in the middle of her chest, in the space between her lungs. She hadn’t lost weight, her appetite was good, and, except for the bad cold that was hanging on, she felt fine. The doctor learned from Ms. Barcrand that she had had a chest x-ray a year earlier at the local health department as a screen for tuberculosis. The health department informed her that she did not have TB but that there was something abnormal on her x-ray that she should see someone about. She had not seen a doctor since then. The clinic doctor gave her some medicines for her cold and asked her to return to the clinic in two weeks.
When Ms. Barcrand returned two weeks later, her cold was gone and the doctor had good news for her. He had gotten hold of the health department x-ray done a year earlier and it showed exactly the same shadow that was there now. The shadow had not changed at all; if anything it was slightly smaller. The doctor had no idea what the shadow was, but since it had been there a long time, was causing Ms. Barcrand no difficulty, and hadn’t changed, it was very unlikely to be anything to worry about. To find out for sure what the shadow was would have required several expensive, invasive, and risky tests. After discussion, the two of them agreed that she would return for repeat x-rays in six months and then probably annually if the shadow remained stable. A careful weighing of the available evidence with a sensible result that reassured the patient at limited cost was less risky for Ms. Barcrand than the tests that would have to be done to pin down a diagnosis. Medicine done the way it should be done.
But, there is more to the story. A year or so after the above described clinic visit, the doctor who was following Ms. Barcrand stopped working in the general clinic and she was assigned to a new primary care provider (PCP; we aren’t sure when we stopped calling them doctors). This new PCP was apparently a committed disciple of the yes-or-no school of medicin
e. One look at the x-ray and Ms. Barcrand was told that she probably had cancer. CT scans of her chest and abdomen were done. They showed the mass in the middle of her chest but also a small shadow in her liver. “Aha!” the PCP no doubt thought. The cancer has spread from her chest to her liver. Plans were made to get a surgeon to open her chest and take a biopsy of the lesion. Ms. Barcrand, beside herself with the fear that she had a fatal cancer, contacted her original doctor, who organized a thorough review of her case by a panel of specialists. On a careful look, the radiologist decided that the shadow in her liver was probably a normal vein seen at an odd angle, and all agreed that if the mass in her chest was cancer it was unlike any cancer that any of them had ever seen. Ms. Barcrand was assured that although none of those specialists knew what resided in her chest, it almost certainly wasn’t cancer. She had no further tests, but returned annually for a chest x-ray which remained completely unchanged for years. She narrowly escaped the avalanche of tests and other interventions that a doctor who had to have a definitive answer would have triggered.
But if you and this doctor get too deep into a problem, it may be difficult for either of you to see the situation with clear eyes. Neither of you may recognize that you have stepped onto a slippery slope that will cost a lot of money, put you at mortal risk, and will not make you healthier. And, unfortunately, there may not be a cooler head around to rescue you.
Michael Rothberg, a professor at the Cleveland Clinic, describes just such an experience of his aging father in an article in the Journal of the American Medical Association titled, “The $50,000 Physical.”47 The story has been repeated elsewhere, but it is such an accurate real life illustration of the possible consequences of this yes-or-no approach to medicine that it bears another telling.
Dr. Rothberg’s eighty-five-year-old father moved with his wife into an assisted living facility in a new locale. He had only a couple of minor health problems. Shortly after relocating, he went for a checkup with his new primary care provider. When the doctor palpated the gentleman’s stomach he thought the aorta, the main artery in the abdomen, was too prominent and wondered whether there was an aneurysm, a swelling of the aorta that can be serious, even fatal. An ultrasound study showed a normal aorta, but something suspicious in the pancreas, so the doctor ordered a CT scan of the area. The CT scan showed a normal pancreas, but there was a worrisome shadow in the liver. The patient had an occupational history of exposure to organic chemicals over his many working years, and the doctor knew that exposure to these chemicals was sometimes associated with liver cancer. Mr. Rothberg felt fine. He was unaware of any problem with his liver. But his physician sent him to a specialist who felt that this thing in his liver had to be biopsied to find out if it was a cancer. So Mr. Rothberg was admitted to the hospital for the procedure which involves sticking a large needle through the abdominal wall into the liver and removing a small core of tissue. Well, it wasn’t cancer. It was a localized tangle of blood vessels called a hemangioma and sticking a big needle into a tangle of blood vessels is not a good idea. Mr. Rothberg bled profusely into his abdomen, requiring transfusion of ten pints of blood. He was in a lot of pain and almost died. The total bill for all this was, as the title of the article says, $50,000. So the doctor’s curiosity was satisfied, but at exorbitant cost in dollars and human suffering and with absolutely no benefit to Mr. Rothberg. This doctor, as someone said of a preacher after a too long Sunday sermon, missed a lot of good stopping places.
What would our good doctor have done differently? She certainly would have called a halt to the fiasco somewhere early in the course of things and sent Mr. Rothberg on his merry way with his wife to enjoy his new home for whatever time he had left. But how would the doctor have known when to quit? There is no clear and unambiguous answer to that; if there were, this man’s doctor might have restrained himself. A doctor more comfortable with uncertainty would know that some people think that there is no reason to even do an exam on a person who has no complaints. She would also know that feeling the stomach of an elderly man is not likely to tell you much of anything specific. Then having felt something abnormal and done an ultrasound, should you chase after a shadow in the pancreas? Not clear. Cancers of the pancreas are devilishly hard to cure, but the best chance is if you find it early. So there was a maybe at every stage of this man’s workup. Deciding what and what not to pursue means knowing the available evidence, but understanding it in the context of this specific person and circumstance. In fact, with exactly the same evidence in hand, the decision may differ in different people and different situations. A single well-timed maybe would have served this patient much better than a battery of noes and saved him or his insurance company $50K to boot. Choosing when and where to deploy the maybe requires knowledge, understanding, and a level of comfort with uncertainty.
The doctor hell-bent on a definitive answer to every question bears some responsibility for the high cost of health care. The dogged pursuit of a yes or no answer that may not be critical to your care can lead to excessive use of expensive tests. A coalition of medical societies has formed a Choosing Wisely project that has created lists of tests and treatments that most doctors agree are done too often.48 Some examples are exercise tests for heart disease in people without symptoms who are not at high risk, extensive imaging tests for low back pain, CT scans and MRIs for headaches, and bone density scans in women at low risk for osteoporosis. In each case, not only are the tests expensive, but they are likely to precipitate more tests, magnifying expenses without improving care. In 2009, just twelve medical tests deemed by expert review to have been done without an adequate indication cost the system $6.8 billion. The human cost is unknown but chances are it is really big.49
A doctor who is determined to get an answer can call on a frightening array of technologies and there are few restraints. “Nobody ever gets sued for ordering unnecessary tests,” says Arizona generalist Doug Campos-Outcalt.50 The lure of ever proliferating technology to one not comfortable with ambiguity is irresistible. Some choose the profession primarily because they fall head over heels in love with the technology and, as often happens in passionate love affairs, they can lose their perspective. Technology, in perspective, is a fabulous addition to medicine, but best to avoid doctors too much enthralled by it. They really are in the wrong business.
Given all that, how does this doctor stay in business? Why don’t his patients see that the doctor rather than the patient is at the center of this relationship and move on? At some point shouldn’t it become clear that you are paying a lot of money and taking unnecessary risks primarily to satisfy the doctor’s need for certainty?
There are probably several reasons for doctors to take this yes-or-no approach, but an important one is that we all want certain answers to questions about our health; it’s a human tendency. In fact, a compelling reason to avoid this kind of doctor is that you are a human being and therefore a set-up for a folie à deux, a relationship that exploits your own discomfort with uncertainty and loses the focus on making your health as good as it can be. You have to rely on your doctor to help you understand that the best answer can be maybe, a foreign concept to the doctor with a yes-or-no obsession.
The human tendency to want an unequivocal answer even without a clear question is illustrated in a study of men’s reactions to measurements of the level of prostate specific antigen (PSA) in their blood. Although there is controversy in this area, there is some evidence that a markedly elevated PSA suggests the possibility of prostate cancer. The next level of test is a biopsy of the prostate gland. That is not a very complicated procedure, but it is invasive, uncomfortable, and with some risk. In this study forty percent of men whose PSA measurement was equivocal, that is, “provides no information about whether or not you have cancer,” when given the choice, still opted for going ahead with a biopsy.51 Even when there is nothing to explain about the test results, no information one way or the other, not even a maybe, we still want to exhaust
every remote possibility. Most of us are prime candidates for this doctor’s brand of black or white medicine.
The doctor who has trouble dealing with uncertainty is stuck with a concept of diagnosis as a dichotomy, like a true/false test. But human disease is not a short answer quiz. It is a very private essay. Your doctor’s job is to understand your unique health-disease narrative and use that to help decide what questions to ask and, from among the extensive menu of possible tests, which ones are likely to give information that will make a difference. This breed of doctor doesn’t ask questions if getting at the answers involves subjecting you to risk, expense, discomfort, or inconvenience unless the answers are likely to cause a change in your care, no matter how interesting she might find the answers. There is a place for research in human beings and we hope that you will volunteer for such studies if you’re asked to, but that brand of research must be done with full disclosure, according to strict rules, and with objective and diligent oversight. Your health care is not about satisfying the intellectual curiosity of your doctor, it’s about doing what is best for you.
The Good Doctor Page 5