However, before getting too enthralled with the potential of genetics as the ultimate in personalized care, we should remember that probably only about thirty percent of our risk for the diseases we are most likely to get is explained by genetics. A critical doctor knows that and is a little less enthusiastic than President Bill Clinton and National Institutions of Health Director Francis Collins, who promised in the year 2000 that knowing the sequence of the human genome “would revolutionize the diagnosis, prevention, and treatment of most, if not all, human diseases,”17 accomplishing “a complete transformation in therapeutic medicine.”18 Seventeen years later, we still have a way to go.
Genetics has already helped us understand our biology in new ways and will help to advance our health care as well. But for most common human diseases, the answer just isn’t that simple; multiple genes are usually involved, many factors influence what a gene does other than the sequence of bases in the DNA, and in many cases, genetic risk is a minor contributor to actual risk. As with a lot of things in medicine, the thoughtful doctor’s attitude toward the promise of genetics is cautious optimism.
Some would argue not only that genetics is not the final answer to fitting health care to a specific person, but that personalized medicine doesn’t require genetics at all, that conscientious doctors have in fact been doing it for four hundred years. University of California, San Francisco professor of medicine John Murray complains in the American Journal of Respiratory and Critical Care Medicine that the definition of personalized medicine as “an emerging practice . . . that uses an individual’s genetic profile to guide decisions made in regard to the prevention, diagnosis, and treatment of disease”19 is a blatant effort to hijack a term that describes what doctors have been doing for centuries.
The height of most doctors’ dudgeon may not reach that of Dr. Murray’s, but it does seem unlikely that genome sequences, no matter how complete, affordable, and available, will ever tell the whole story. Important parts of the story are not written in what NIH Director Francis Collins calls the “language of life.”20
What doctors don’t know nourishes discoveries that advance medicine. And it is also the uncertainties, those niggling ambiguities, that give your doctor and you the latitude to tailor the evidence-based dogma to fit your unique case.
Recollection of a patient encounter, KB.
Hema Bashyam, “Lewis Dahl and the Genetics of Salt-Induced Hypertension, Journal of Experimental Medicine 204, vol. 7 (2007): 1507.
N. Graudal, G. Jürgens, B. Baslund, and M.H. Alderman, “Compared with Usual Sodium Intake, Low- and Excessive-Sodium Diets Are Associated with Increased Mortality: A Meta-Analysis,” American Journal of Hypertension 27 (1129): 1129-37.
Roger Kaza, “Ancel Keys,” Engines of Our Ingenuity 2469, http://uh.edu/engines/epi2469.htm.
Ancel Keys, ed., Seven Countries: A Multivariate Analysis of Death and Coronary Heart Disease (Cambridge: Harvard University Press, 1980).
Rajiv Chowdhury, MD, PhD; Samantha Warnakula, MPhil; Setor Kunutsor, MD, MSt; Francesca Crowe, PhD; Heather A. Ward, PhD; Laura Johnson, PhD; Oscar H. Franco, MD, PhD; Adam S. Butterworth, PhD; Nita G. Forouhi, MRCP, PhD; Simon G. Thompson, FMedSci; Kay-Tee Khaw, FMedSci; Dariush Mozaffarian, MD, DrPH; John Danesh, FRCP; and Emanuele Di Angelantonio, MD, PhD, “Association of Dietary, Circulating, and Supplement Fatty Acids with Coronary Risk: A Systematic Review and Meta-Analysis,” Annals of Internal Medicine 160, vol. 6 (2014):398-406.
personal communication, to KB from James Hogg, MD.
Stephen Jay Gould, “The Median Isn’t the Message,” https://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf.
Susan Knight and Deborah Symmons,“Masterclass: A Man with Intermittent Fever and Arthralgia,” Annals of the Rheumatic Diseases 57 (1998): 711-714.
Gina Kolata, “Treatment for Leukemia, Glimpses of the Future,” The New York Times. July 7, 2012, http://www.nytimes.com/2012/07/08/health/in-gene-sequencing-treatment-for-leukemia-glimpses-of-the-future.html?_r=0.
NCI-Molecular Analysis for Therapy Choice (NCI-MATCH) Trial. National Cancer institute. http://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-match.
Nicholas Wade, “A Decade Later, Genetic Map Yields Few New Cures,” The New York Times, June 12, 2010.
Nicholas Wade. “A Decade Later, Genetic Map Yields Few New Cures.” The New York Times, June 12, 2010
John Murray, “Personalized Medicine: Been There, Done That, Always Needs Work!,” American Journal of Respiratory and Critical Care Medicine 185, no. 12 (2012): 1251-1252.
Francis Collins, The Language of Life: DNA and the Revolution in Personalized Medicine (New York: Harper Collins, 2010).
CHAPTER 3
Finding Your Doctor: A Field Guide
Your pool of potential personal doctors may be limited for a number of reasons—insurer, health system, geography, availability, etc. However, almost any health care insurance allows you some say in choosing a primary care doctor. This needs to be a personal relationship, and so you don’t want to settle for a default doctor if you can possibly avoid it. Of course there are no perfect doctors since they, like the rest of us, are human beings. But you’re not looking for perfection. What is most important if you are to be as healthy as you can be is not your doctor’s perfection, but whether this specific doctor-patient partnership is going to work for you over the long haul.
Predicting the course of relationships is always a hazardous business, but if you pay attention early on, you can improve your chances of making this partnership at least functional. Start by paying careful attention to your personal feelings about encounters with the doctor. After a first visit or two, reflect on the experience, ask yourself a few questions and answer them as honestly as possible: Are you convinced that this doctor tells you the truth . . . the whole story? Are you convinced that she not only listens to you but hears what you’re saying? Are you comfortable revealing to her everything about yourself that could be in any way related to your health? Are you reasonably comfortable in her presence naked (or nearly so)? Do you believe that she is genuinely interested in you as a fellow human being? Does she seem happy with her job? There is also your gut reaction to the situation that should not be ignored even if it is difficult to be specific about. What did this visit really feel like? Would you hesitate to return to this doctor when you need to?
The goal in this hunt is to find a doctor who doesn’t just know what she is doing but who cares for those for whom she is doing it. Here are some observations and suggestions that may help to identify the best doctor for you from among the possible choices.
1. You want a doctor who listens, preferably for longer than eighteen seconds; that’s how long the average doctor is said to listen to a patient before interrupting. In his book, How Doctors Think, Harvard physician Jerome Groopman claims that doctors don’t just interrupt the patient’s story after eighteen seconds, they also make snap judgments about a diagnosis at that point and tend to fixate on that judgment.21 And they’re often wrong; somewhere between 15 and 25 percent of patients are misdiagnosed. After all, you can’t tell the doctor your diagnosis, as Osler says you will, unless the doctor listens to you. It may be easier to order a bunch of tests than to listen to your story, but it is less efficient and more likely to miss something important. It also runs up the cost.
The very fact that a history of the present illness has always been considered a critical part of the doctor-patient encounter and of the medical record implies that the patient tells a story and the doctor listens to it. But even if your doctor resists the eighteen-second urge to interrupt, she may not be listening. Hearing and listening are not the same; they use different parts of the brain. Most people are not good listeners. When adults s
it through a ten-minute oral presentation, half of them can’t describe what they heard after only a few minutes and three fourths can’t do it forty-eight hours later.
Listening skills have not been a prominent part of medical education until recently. However, professional and commercial health care organizations, motivated by accumulating evidence that listening doctors’ patients are healthier, are making efforts to improve physicians’ listening skills. Apparently those skills can be taught, and the results are better patient outcomes and happier and more efficient doctors.
There may be some nature as well as nurture operating here. The composer Aaron Copland, whose livelihood depended on listeners, said that listening was a gift, an “inborn talent of some degree.” Granted the gift “can be trained and developed,” and efforts to do that are laudable, but perhaps you should look for a doctor who is an instinctive listener, who has the gift, who knows in her bones that the chief complaint is yours not hers and so pays careful attention to what you have to say. You will recognize this person on your first visit. She will listen to you for longer than eighteen seconds, probably a lot longer.
“The ideal listener, it seems to me,” Copland writes, “would combine the preparation of the trained professional with the innocence of the intuitive amateur.”22 We like that. We want doctors with the deep knowledge and broad understanding of medicine and of human nature of “a trained professional,” but who listen to our story free of bias and snap judgments, “with the innocence of the intuitive amateur.”
2. You want a doctor who recognizes black swans. In his book, The Black Swan, Nassim Nicholas Taleb uses the metaphor to mean discoveries that are not predictable and have a large impact on what we know (before the first black swan was discovered, all swans were white).23 So you want your doctor to be always alert to unexpected information that upsets conventional thinking. She does not dismiss outliers out of hand, but ponders what they could mean. She stays aware of research in medicine and related areas and, while suspicious of the hype, looks carefully for tidbits that may have big implications. She does that with your personal information as well. Is there something in your story or in the test results that doesn’t exactly jibe, and is that a clue that your case is due for a thorough re-examination?
3. You want a doctor who sees the gorilla. The reference is to maybe the best-known experiment in human psychology. If you aren’t familiar with the experiment, you should stop reading this book, get on the internet, go to www.theinvisiblegorilla.com/gorilla_experiment.html and watch the video.
While at Harvard, psychologists Christopher Chabris and Daniel Simmons made the video of two teams of people with different color shirts passing a basketball around.24 The observer is charged with counting the number of times one of the teams passes the ball. In the middle of the video, a person in a gorilla suit walks to the center of the screen, thumps his chest and walks off after about nine seconds. When Chabris and Simmons had Harvard students watch the video and count the number of passes, fully half of the students got the number of passes right, but did not see the gorilla. The behavioral principle operating here is that we see what we are focused on to the exclusion of even major events outside our area of focus.
You want a doctor who both counts the number of passes of the basketball accurately and sees the gorilla. That is, she is thoroughly aware of the obvious and expected information, but not so fixated on it that something important but unexpected is missed. She is not so satisfied with establishing a diagnosis and a treatment plan that her mind is closed to other possibilities. Your health care and treatment are processes, not events. This is an enduring partnership with you at its center. Your doctor’s knowledge of who you are lets her see the unexpected incongruities that are tipoffs that something is amiss.
4. You want a doctor who hears the hoof beats of zebras. The universal admonition to medical students, “When you hear hoof beats, think horses, not zebras,” was apparently coined in the late 1940s by Theodore Woodward, University of Maryland infectious disease specialist and medical department chairman.25 It has been used ever since as a diagnostic metaphor for the truism, common things are common. Our good doctor has heard that old saw all of her professional life, but she isn’t as taken with it as she once was. She also learned from Johns Hopkins professor of medicine A. McGehee Harvey that “In making the diagnosis of the cause of illness in an individual case, calculations of probability have no meaning.”26 For a solitary person, those hoof beats are just as likely to come from zebras as horses. Sometimes doctors go through major intellectual contortions trying to turn zebras into horses and cause a lot of difficulty for their patients and themselves in the process.
Nancy Pogue’s (not her real name) personal experience is a good example.27 Ms. Pogue spent fourteen years seeing a number of doctors about her joint weakness, pain and eventually a fluctuating blood pressure. She was told at various times that she might have multiple sclerosis, lupus, irritable bowel syndrome, or fibromyalgia. Finally, she saw a new doctor and introduced herself by declaring, somewhat defensively, that she was not a hypochondriac, something was really wrong. Sensing that Ms. Pogue’s past encounters with medicine had been less than satisfactory, the doctor responded, “Try me.” Then the doctor proceeded to listen attentively to Ms. Pogue’s symptoms and ask a lot of questions that Ms. Pogue did not see as relevant. After pondering the history and examining Ms. Pogue’s skin and joints the doctor, for the first time in the fourteen-year history of this patient’s illness, arrived at the correct diagnosis of Ehler-Danlos syndrome, a congenital disease of connective tissue that can present in many different ways. Patients with this disease sometimes even refer to themselves as medical zebras.
Ironically, Dr. Woodward’s axiom is less and less relevant even to his specialty, infectious diseases, as global travel becomes increasingly common.28 The most likely explanation of bloody urine in a young woman who has spent her life in Minnesota is a urinary tract infection. But for a young woman who moved to Minnesota three years earlier from a refugee camp in Kenya, the most likely cause is schistosomiasis, a disease virtually never seen in lifelong U.S. residents.
Horses aren’t always the most likely source of hoof beats anymore—no matter where they’re heard.
5. You want a doctor who is not afraid to say: I’m sorry. I was wrong. I don’t know. I need help. Those are the four sentences that mystery writer Louise Penny’s fictional Montreal detective Armand Gamache drums into his mentees.29 You want a doctor who knows those sentences and doesn’t hesitate to use them. Don’t buy the infallible doctor myth and avoid anyone who tries to sell you on it. This is not just an annoying pet peeve. Arrogance is a near fatal flaw in a profession that is rife with a wonderful ambiguity that enables the care of each quirky one of us. Facts are important, but don’t get too fond of them; they may not be there when you need them. You want a confident doctor but not an arrogant one. Arrogance doesn’t know that it doesn’t know.
6. You want a doctor who doesn’t overestimate the power of your genome. (You may need to hurry; the supply is rapidly dwindling.) Genomics is beginning to contribute to health care and that will only increase, but you are more than the sequence of bases in your DNA. No matter what appears in the newspapers and regardless of how many books appear on genomic medicine, you are not best served by delegating your health care to a geneticist, as important as they are. Your doctor should be thoroughly conversant with human genetics and up to date on the available tests and what they mean, but she should keep a healthy skepticism—hold on to her sense of maybe.
7. You want a doctor whom you trust, not necessarily one you like. It is very popular these days for institutions to gather information about how satisfied patients say they are with their doctors and tout that as a good reason for choosing them. The most common tool is a questionnaire that results in a Press Ganey score of patient satisfaction in a number of areas. You shouldn’t pay too much attention to these scores. What yo
u want is a doctor whom you trust, who knows her business, who gets the relationship between evidence-based and personalized health care, and who is honest and reliable.
There are many factors that influence Press Ganey scores. An emergency room doctor claims he got bad scores because he refused to prescribe narcotics to addicts;30 that might well be true. Researchers at the University of California Davis claim that “the most satisfied patients are 12 percent more likely to be hospitalized and 26 percent more likely to die.”31 At least as currently done, attempts to equate objective scores of patient satisfaction with physician quality may be overrated. William Sonnenberg, President of the Pennsylvania Academy of Family Physicians, writes in a Medscape article, “We can over-treat and over-prescribe. The patients will be happy, give us good ratings, yet be worse off.”32 Your doctor must treat you with dignity and respect, but integrity and competence may have little to do with charm.
Of course you need to be aware that doctors are subject to the same maladies that afflict the rest of us—personality disorders, mental illness, depression, substance abuse, etc.—and the last thing you need is a doctor with serious behavioral issues. But, apart from confirming that a doctor is not an addict, is in reasonably good mental health, is appropriately trained, licensed, and credentialed, and has not been convicted of insurance fraud, of padding his personal bank account by doing unnecessary procedures, or of committing some heinous crime like assault or murder, we don’t know of a reliable objective test of trustworthiness.
The Good Doctor Page 3