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Confronting the reality of uncertainty in medicine

Allen Frances, MD
Physician
June 30, 2013
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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 oversold. 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.

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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 a psychiatrist and professor emeritus, Duke University.  He blogs at the Huffington Post.

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Confronting the reality of uncertainty in medicine
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