What Doctors Cannot Tell You, Q&A with Kevin Jones

Q&A with Kevin B. Jones, author of
What Doctors Cannot Tell You: Clarity, Confidence and Uncertainty in Medicine (Book website)

[I have known Kevin since college and have always admired his kindness, wisdom, poetry, and intelligence. He has written a thoughtful book about uncertainty and confidence in medicine, and I'm honored to have him participate in a Q&A for BCC.]

Q: Why did you write What Doctors Cannot Tell You?

A: When I began medical school, the volume of knowledge to absorb impressed me. Later, after I had spent more time around the actual practice of medicine, how much we didn’t know impressed me even more. All those neat and tidy principles and molecular pathways weren’t so perfect after all. Most physicians know how untidy much of our medical knowledge and know-how are. They know that much of what they do is based on educated guesses. Do most patients know this? I wrote this book because I’m not so sure that they do. I am also not sure that we in medicine do such a great job explaining what we don’t know. The more I thought and wrote about medical uncertainty, the more I localized the critical defect to our conversations. Yes, we need to know more, but that is a long, even unending process. Along the way, we need to have more clear conversations.

Q: What are the most difficult conversations you have with patients?

A: Many marvel at how difficult it must be to deliver a new cancer diagnosis to a teenager, or parents of small children. To be perfectly honest, those are not my most difficult conversations. They are not the most difficult, because as heart-wrenching as that new diagnosis may be, it also comes with a plan, a very concrete plan with details and protocols and appointments and schedules. Patients and families find great comfort in those certainties. They may find more comfort than is really appropriate, but they find comfort nonetheless. My most difficult conversations are the conversations before we know that some mass is indeed a cancer. There is nothing concrete to discuss in those meetings. I have little information of good or bad character to share. Most patients coming to see me will not — in the end — actually have cancer, but not knowing can be extremely unsettling. Those are the toughest conversations for me.

Q: You suggest that physicians are well-intentioned, but may be dishonest at times, inadvertently. Explain.

A: I doubt any group of human professionals on the earth is more consistently well-intentioned than physicians (well, mothers are, I guess). I really believe that most doctors want to do the right thing. Most are skilled and knowledgeable in their fields of discipline and take the honing and maintaining of that skill and knowledge very seriously. However, we are dealing with biology. Worse than that, we are dealing with manipulated biology. Biology has a natural and broad variation. Manipulation in the form of treatment intervention spreads that variation even wider. Any time a physician quickly explains a test, or a treatment, or a prognosis, she will simplify a broad and messy truth replete with variation into a simple black and white bullet point. There is no way to do that without a tinge of dishonesty creeping into the conversation.

Q: Specifically, you address the concept of confidence in physicians and surgeons. How can confidence become a problem?

A: As patients, we all want competent and confident physicians. We can only choose to undergo brutal and painful treatment regiments if we feel some confidence that the bad-tasting medicine will accomplish something good for us. That decision is not an entirely rational one. It is an emotional decision. Patients will emotionally choose whether or not to trust a given physician, believe the diagnosis rendered, and undertake the proposed treatment. I have no problem with the necessity of that kind of confidence. The problem is that physicians know how to score confidence points with patients. Some surgeons are especially skilled at this. Many patients love to observe a surgeon who confidently and dogmatically sees everything as black and white and straight-forward. That surgeon will have the quick-fix that patients want. But what if his black-and-white, dogmatic quick fix is really a wild guess? If the patients knew that the facade of confidence was not the surgeon’s honest reflection on a situation, but a little bit of an act, would they still want it? I’m not so sure. I had a recent experience that fits this perfectly. It is not recorded in the book. A patient came to me for surgery to remove a tumor that had recurred after surgery by another specialist. The patient and her husband had celebrated with champagne and a big dinner out after hearing from the first surgeon that his surgery had been successful, that he had gotten it all. The only problem was that he had not gotten it all. It came back in a matter of weeks. When I discussed with them — much more cautiously, with much less apparent confidence — that I felt I had on a second surgery gotten it all, but that there remained many uncertainties, they lifted no champagne glasses. They trusted me, but it was a different kind of confidence. It was confidence based on their assessment of my honesty, rather than my bravado.

Q: So, the first surgeon was overconfident and wrong. Is this some of that dishonesty you were talking about, or did he just make a mistake?

A: I do not think he made a mistake in practice. He simply communicated in a different mode. He was more salesman, and less educator at that celebratory moment. I think that distinction is really critical. Because every patient and every physician will necessarily interact with organic and fuzzy biological truths, I feel much more comfortable seeing them standing side-by-side as teacher and student observing the complexities and uncertainties together, rather than as confident salesman presenting the wares behind him to a trusting consumer.

Q: What does knowing mean to a physician?

A: What we know best in medicine, we know from very large populations. Whether relating to a test, or treatment, or prognosis, populations give us our best principles of knowledge. Better than observations of one population are comparisons between two populations. In that unique scenario, statistics can discern with great confidence at least whether or not one population was different from the other in the end. The problem is that this kind of population-based knowledge applies very awkwardly to patients, who come in one-by-one, not as a population. We should use the science of populations to glean principles that guide treatment, but we must apply those principles circumspectly. We also should apply them with humble acknowledgement that there will be variation in results.

Q: With regard to our religion, Latter-day saints discuss very different concepts of knowing and not knowing. How do these affect medical decision-making for you and your patients?

A: It has surprised and delighted me since my move here to Utah to have some patients who share my faith. I had not really experienced that before. Mormons receive medical care differently than many others. First, most are shockingly unafraid of dying, which changes every discussion in the face of a cancer diagnosis. Second, they believe deeply in an ability to know — shall we say — between the lines. They trust that their intuition will receive divine guidance. On the other hand, Mormons are also generally quite practical. This means that most are happy to receive all the information they can before turning decisions over to this other sense. Finally, Latter-day Saint theology heavily emphasizes each individual’s responsibility to ask questions and find out truth for oneself. Part of that learning process involves the rather radical idea of trying-on a truth or principle by acting on it before one can be totally certain it is correct and true. Those kinds of decisions in the face of spiritual uncertainty meld well with decisions in the face of unavoidable medical uncertainty.

Q: Does your faith play a role in your work as a physician and writer?

A: Absolutely. As a physician, I see the impact of faith and miracles embedded in that range of uncertainty that is left after biology teaches me as much as it can. I see faith tweak the circumstances all the time. I could not do my best without it, personally. As a writer, my faith gives me an extremely high — really untenably high — standard for honesty. Because my faith places such a high premium on honesty, I really strive to deliver it as clearly as I can. That striving for honesty motivates my writing of this book. Finally, as I mentioned a minute ago, my faith emphasizes an individual’s capacity and responsibility to choose. This book focuses on the same. People deserve the truth from which they can make decisions, but the decisions should ultimately be theirs.

Comments

  1. Very interesting and most insightful. Thanks to you both. I happen to live in a ward with many physicians. Several of them have told me that patients tend to operate under the assumption that medicine or surgery will (and should) be able to rapidly identify and then solve almost any problem. They report that this expectation tends to lead to frustration from both the doctor and the patient. Is your experience different from this?

  2. KerBearRN says:

    Awesome, thank you! I am a nurse and LDS and much of what you describe here I have also observed in my own practice (and in practice by other nurses). Some nurses are black and white, others of us struggle with expressing a myriad shades of grey. Very interesting observations, and I will consider them as I strive to improve my own practice. Thank you again!

  3. A lot of this makes sense from a logical standpoint. I’ve personally gone through the “nobody knows what’s wrong with you” process, where they pick the most statistically likely choice and hope for the best. (I’m still in the middle of one of these right now.) The doctors present a very confident diagnosis, though.

    I find your comments at the end particularly neat. I feel sheepish when I admit that I looked up my symptoms on WebMD or Wikipedia before consulting a doctor. More information, please! =) I wonder, though, are other doctors going to ostracize you for revealing the wizard behind the curtain?

  4. J. Case says:

    Your 2nd last answer about knowing and not knowing rings true as I think back on watching my father die of cancer. I called the Huntsman cancer information 800 number many, many times with questions. I’m glad you are associated with them. And I vaguely remember you from Iowa City.

  5. This is excellent. Thanks, Sam.

  6. Dan Mudrick says:

    Thanks Sam and Kevin for a very insightful conversation (and thanks to both of you for being great examples to me over the years). As a doctor, I agree that this is an extremely important and challenging question. For me, the first step is to honestly try to understand what I know and don’t know in a given situation as it applies to the patient before me. The second, and usually more difficult step, is to figure out how much of that uncertainty should be kept in the black box of my decision making process before I make a recommendation, and how much should be brought forward to the patient in the process of shared decision making. I would love to have an easy answer to that, but I find that there is extreme variation between individuals in their desire to do the work of decision making (some hunger for information and empowerment while others flee from it and happily defer to authority), as well as in their capacity to deal with the complexities of uncertainty. For me, it is sometimes easier to err on the side of pushing the uncertainty and weight of decision making to the patient, even if they may not want or be able to manage it. It’s a tricky balance I am still working on.

    Can’t wait to read your book Kevin. Best wishes.

  7. This sounds like a wonderful book by a really good doctor. I wish all doctors could be like this.

  8. Thank you for the interesting discussion. Kevin, if you come by the blog, I would be interested to hear whether you think the political economy of healthcare in the US contributes to a culture where the bravado you describe is more common.

  9. Meldrum the Less says:

    Excellent and reflects much of my recent experience of being diagnosed this year with a serious condition that drastically changes my life game plan. My recently released Bishop is a capable specialist for the condition I have. But I feel so much more comfortable with a separation of church and state of health. He seems mildly insulted but I think he understands.

    What I think would be an interesting discussion; a compare and contrast, between what your doctor and what your Bishop cannot tell you. Or will not tell you.

  10. Just ask an anesthesiologist how general anesthesia works or ask a neurologist almost anything about how the brain works and you’ll realize how little we know about anything

  11. SC Taysom, I share their frustration at what some patients expect from medicine, but I do not think I can blame it entirely on the patients. Afterall, they have received quick, clipped, dogmatic answers from many other physicians, many times. My whole goal is to try to open the conversation a little bit, so that it is less dogmatic and more dialogue. That will help both sides find the “sweet-spot” for any given physician-patient decision-making. Just as Dan Mudrick notes, that balance is tricky to find.
    FHL, no doubt some physicians will not be happy about this book, but I think more feel just as trapped by the odd expectations some patients bring to medicine as I do. Most would happily step down from the pedestal, if invited.
    Aaron R, obviously, we are all thinking a little more about the US healthcare system this week than we have in recent months. Systems definitely impact the physician-patient relationship. I talk about this quite a lot in the book. However, no system can really say they have it perfect. Yes, some of the economics of helathcare in the United States may drive a little bravado among some providers. In contrast, though, having worked in Canadian health care as well, I have never seen a system that is less patient-focused than that was, which can lead to the same end: a physician handing down dogma rather than discussions of options. I also think that there are excellent communicators in both systems who transcend the inherent limitations. Definitely the focus of the book is to encourage individuals to improve their conversations in healthcare, no matter in what system they find themselves.

  12. As a medical student, I too was shocked at how little we really know about medicine. One of my professors once said, “Unfortunately, half of everything we’ll teach you in medical school will turn out to be wrong. And we don’t know which half.” I think he was being generous, actually. It astounds me how much faith patients place in doctors.

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