What Doctors Do When They Don’t Know What to Do

Medical care in the U.S. over-promises and under delivers. It costs about twice as much as in most other developed countries, but compared to them manages to produce only mediocre health outcomes. The profit motive has resulted in badly misallocated resources — too much testing and treatment for people who don’t need it and lousy access for many who do.

The impact of advances in medical science on the delivery of clinical care has also been over sold. The basic science revolution in medicine has indeed been brilliant, with powerful new tools yielding remarkable insights into how our bodies work. But translating this into better tests and treatments has been slow work and the practical benefits derived from all the brilliant science have been surprisingly disappointing.

There is a big disconnect between the daily enthusiastic reports of great new research results and the fact that treatment outcomes have improved only slowly and selectively. Clearest example — we have done a lot more to defeat cancer by dramatically reducing smoking than through the entire expensive forty year research war we have waged against it.

Certainly, we need to aggressively pursue medical research, but we also need to be realistic about the limits of our current understanding of disease processes and their treatment.

One negative side effect of scientific drum beating is the unrealistic expectation (held by doctors and patients alike) that every medical presentation can be accurately diagnosed and effectively treated. When, as so often is the case, this expectation is defeated by the hard reality of our limited knowledge, doctor and patient are both likely to feel grave disappointment and the relationship between them may become uncomfortable and unproductive.

The only certainty in medicine is uncertainty and the appropriate response to uncertainty is Hippocratic humility. I have therefore invited the comments of a wise, experienced, and humanistic physician to illustrate how this works in practice. Dr. Nicholas Capozzoli of Annapolis, Maryland offers this perspective:

In my neurology practice, I often can’t make a specific diagnosis even after taking a careful history, doing a thorough physical exam, and ordering all the appropriate diagnostic tests.

Such uncertainty is inherent in most of medicine — it is sad but true that lots of problems elude our current medical tools and knowledge.

This is tough on patients. Understandably, they want (sometimes demand) clear answers about what’s going wrong and a treatment recommendation that promises cure or at least substantial relief of symptoms. My challenge is to be helpful and to maintain a healthy doctor/patient relationship even when I can offer no clear answers to diagnosis or treatment.

This isn’t easy or natural. Doctors tend to be uncomfortable admitting uncertainty to themselves or to their patients. Too often, they feel it’s a threat to their skill, authority, or expert status to say they simply don’t know what’s causing the symptoms and that there is no magic bullet to cure them.

Often enough, doctors default to blaming the patient with an explicit or implicit ‘it’s all in your head’.

I’d like to make a case that uncertainty can be dealt with in a much more positive way. First off, let’s not forget the great reassurance that can also come with uncertainty. At least the distressing medical symptoms are not due to a dreaded brain tumor, multiple sclerosis, Lou Gehrig’s disease or any of the dozens of other diagnoses that bring with them the unpleasant certainty of a dire prognosis.

Patients will usually worry whether the doctor has done enough… is he being taken seriously or is the doctor inappropriately blaming symptoms on psychology or stress. Should she get another opinion?

After 40 years of practicing medicine, I’ve become quite comfortable saying that I simply don’t know what’s causing the problem. It serves my patients well to admit that things are still too unclear to call. I tell them that I’m overjoyed that catastrophic diagnoses have been ruled out. I make clear that I take their symptoms very seriously and appreciate how much their lives are impacted by them.

Given how complicated are our brains and bodies, it is not at all surprising that medical science is far from understanding all of their workings. This is unfortunate, but not necessarily a cause for despair. Let’s concentrate on how best to cope with the specific symptoms to make life more comfortable.

I encourage general principles of good health — especially exercise, attention to diet, stress reduction, and meditation. Medications are available when indicated but patients are much more willing to accept (and in fact embrace) changes in lifestyle when the potential side effects of medications and other more aggressive interventions are carefully explained.

Many patients will ask: ‘Will I have to live this way for the rest of my life?’ I respond that I’m confident that over time either a more specific diagnosis will emerge or the symptoms will improve on their own or at the very least we will be able to manage them more effectively. And again, I remind them that we can feel the reassurance that no life threatening disease has been found.

I emphasize that we are waiting for science to catch up, that life changes can make a big difference, and that I am on their side. This goes far in maintaining personal dignity and the integrity of the doctor patient relationship.

As physicians, I believe we should carefully guard against hubris. True expertise lies in being comfortable with our limited knowledge, not denying it. We should avoid separating medical symptoms into the insulting categories of ‘real’ or ‘imagined’.

There are times when a mental health consultation is helpful. Some patients have a clear-cut depression or anxiety disorder that needs attention. Others may need and want counseling on how best to cope with all the problems that come with having an illness, especially one that is unexplained. The patient’s reaction to the symptoms may now be adding to the discomfort. Of course, this is not to say they are ‘not physiological’. It is just that we don’t have as much a handle on the physiology of these symptoms as we do for say diabetes.

Our humility, empathy and visible concern for our patients goes a very long way… this sort of beneficence helps establish a healthy relationship. The patient remains whole and autonomous while we act in their best interests preventing unnecessary medical or surgical interventions which might result from premature labeling.

Thanks, Dr. Capozzoli for sharing your wisdom and experience. The history of medicine is filled with a rogues gallery of useless and dangerous treatments that somehow seemed plausible enough at the time — leeches, blood-letting, emetics, laxatives, heavy metals, and so on. They were offered by doctors and accepted by patients as a way of dealing with the uncertainty occasioned by the fact that no one understood what was causing the illness — and they did much more harm than good.

The difficulty accepting uncertainty is just as strong today as it ever has been. It leads now to excessive testing, quack treatments, and blaming the patient. We need to expand our frontiers of knowledge, but also to recognize our limitations and do the best we can within them. Confronting the reality of uncertainty almost always beats the creation of a false certainty.

Allen Frances is Professor Emeritus at Duke University and former Chair of its Department of Psychiatry. He was Chair of the DSM IV Task Force. This post first appeared in Frances’ regular Huffington Post column.

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13 replies »

  1. We look to doctors as ‘know-it-alls’ and forget that in reality, they are just as human as the patient (but with more schooling) As one of those patients that the doctors are saying, we just don’t know what is going on, thank you for the reminder.

    I have a Great Physician who, one day in His time, will heal me. Until then, we try to manage and I thank Him that I have doctors who show the humbleness of saying, I just don’t know. Yet.

  2. great post! thanks so much for advocating saying “I don’t know”, being careful to not suggest (or think) that it’s a personal problem of the patient’s (e.g. “all in the mind”), and treating symptoms as indicated. If more doctors did this, the world would truly be a better place.

    I would like to agree with Jeffrey Cohen above, however. It is very discouraging to be told I should be pleased I don’t have MS. I view ruling out of things as Thomas Edison progress – now we know several things it’s not. That’s progress, but it’s not a solution.

    And because of the very principle of uncertainty that your blog is about, we don’t know that it isn’t a disease with a dire prognosis: all we know is that it isn’t something we can presently identify an agreed treatment protocol for. In some respects, this is worse. At least the serious identifiable diagnosis would have carried an understandable label and a treatment protocol.

    People are not less debilitated for not having a major disease label (and there was a time when MS patients were diagnosed with “hysterical paralysis” – something like this also happened with polio, if I am not mistaken… so we should keep an open mind for the existence of diseases which may not yet be discovered or well-understood).

    Nor do people necessarily improve despite following good practices such as healthy diet, keeping as busy and active as possible, getting as good rest as possible, and making the best of the situation.

  3. I think medicine works a lot when it comes to face any doctor but in such situation doctor’s message that capture their attention requires personalization and trust. They can build a trust that can work both a side – doctor to patient.
    This post has some good comments by the processional ones. It can be considered in mind when doctors really don’t know what to do.

  4. OUTSTANDING!- Many have said that what our medical profession needs most is a very strong dose of humility.

    I always urge my patients to “fire” any doctor who never says” I don’t know” or worse uses the condescending phrase that “it’s all in your head”

    What we need to say is- “I don’t really know what exactly is wrong with you but I will be taking care of you anyway”. And we also need to say – “I may not be able to determine what exactly is wrong with you but that reflects the limits of our technology not anything about you at all”

    I fully realize the need for both physicians and patients to make and have the proverbial “definitive diagnosis” but the lack of one does not diminish the essence of medicine which has much more to do with caring than it does curing.

    By the way any disorder is ALWAYS both in your head and in your body. I thought we have all accepted that reality by now?

    Dr. Rick Lippin

  5. Excellent post.

    When physicians fail to humbly dialogue with their patients about the limitations inherent to medicine for diagnostics and therapeutics, they contribute to the seemingly growing perception that all symptoms can eventually be attributed to a single diagnosis and that all maladies have a highly effective therapeutic intervention…somewhere. This sets up a mismatch between the patient’s own expectations and the medical reality, a scenario which usually ends badly for both doctor and patient.

    It will be interesting to see how fixed payment models and at-risk contracting will impact this dynamic. Historically, aborting an aggressive workup or therapeutic interventions in an area that the medical science has yet to master has negatively impacted physicians financially and legally- it was in his best purely financial and CYA interests to press on with more stuff . In the future, when the science simply doesn’t exist to successfully intervene with a patients paradigm, will the financial liability of a work-up encourage the ‘I don’t know’ conversation to happen quicker?

  6. Very nice. One aspect of the limits of knowledge in health care is the frequently extremely loose coupling of cause and effect. Clinical practice is not akin to the application of the underlying Newtonian physics and metallurgy that have kept the Golden Gate Bridge standing erect for more than 70 years. You can “do everything right” and still have a bad patient outcome, and, conversely, you can make a lot of mistakes and the patient has a good outcome nonetheless. Confounding factors run amuck at every turn.

    Add to all of that a chaotic approach to health care delivery process driven by contending cross-purposes having everything to do with the short term profits of powerful players and little to do with improving health and, well, we have what we have.

  7. Good post on a very important subject. I completedly agree with Drs Frances and Capozzoli that we often face uncertainty, and that sharing this with patients is important (albeit sometimes disappointing to patients).

    But there are some additional specific things we can do with patients that bear mention (and that we often don’t do). One is to constructively engage with patients and work through some trial-and-error, or “n-of-1 trial” to help figure out what is a good approach for the patient’s unique medical picture and lifestyle considerations. This means discussing options with the patient & care circle, helping the patient implement, and following up within a reasonable time course to check in and make adjustments. (Larry Weed advocates for this approach – and the documentation to support it – in his book Medicine in Denial; part of why I love his work.)

    thanks again for this post.

  8. I agree with the general premise of this article- specifically that our interventional actions to meet the interventional desires of our patients is unwise and potentially harmful. I take issue with the “ruling out” certainty that seems to come through, however. I think hubris needs to be extended to this concept as well. Something like, “As best we can tell, there is currently no sign of any of the serious disorders we were concerned about” is much more likely to be an accurate statement than “I’m overjoyed that catastrophic illnesses have been ruled out.” The patients ill with Kaposi’s and pneumonia in the early 80’s were sick and dying- and we hadn’t discovered AIDS yet to piece it together. We need to continually learn, and perhaps that’s the best reassurance one can give this sort of patient. Saying “Using the skills and information we have available now we cannot make a diagnosis- and I will do my part to continue to learn from and with my colleagues, so that one day we may better have an understanding. In the meantime, in my judgment there is no evidence of a serious diagnosis that requires treatment- and here are some recommendations for that might help with some of your current symptoms…”

    • I understand the words you would like to use instead, but I know from a Healthcare Liaison perspective that you would have lost your patient in the phrasing. They barely remember 20% of what you say because they are so stressed: Is there a want to say that in consumer-friendly language that they might be able to take away with them?

  9. Great piece. In medicine, as I suppose in all of life, patients and physicians alike understand that nothing is absolutely certain and that there will always be questions which can not be answered. Not matter what the diagnosis, or lack there of, we will never really know the future. Therefore, it is critical that the physician build into the doctor-patient relationship, as Dr’s Frances and Capozzoli note, “humility, empathy and visible concern.” What really frightens patients is not the unknown, but that their doctors will desert them in the face of that unknown. When we label a symptom “imagined” or “all in your head,” what we are doing is casting that patient out. The best physicians will realize that the patients with the toughest or strangest or most obscure diagnoses, are the ones that need the most reassurance and connection. We must say, by our words and actions, “I will stand by you, I will be there for you, I will not abandon you to the storm.” With that kind of relationship there would be a lot less “need” for “leeches, blood letting” and other fictitious therapy that take the place of real caring.


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