Terminology and Certainty: Thoughts on Medical Naming
Just because your doctor has a name for your condition
doesn't mean he knows what it is.
Six Principles for Patients
Murphy's Law, Book 2
As Juliet remarked to Romeo, "…What's in a name?" So it is with the problem of diagnosis in medicine, entangled inevitably with the problems of naming and definition. The use of language, to represent things we have never experienced is knowledge by description. But by far most of our knowledge is acquired by direct experience, as so beautifully observed by Shakespeare's Juliet, in her next phrase: "A rose by any other name would smell just as sweet." Juliet's experience, the kind we cannot always put into words is sometimes described as knowledge by acquaintance.
In our attempt to translate our reality into words, we range from the idealized abstractions of mathematics and physics, .e.g. there are no synonyms for atom or neutron to the fuzziness and ambiguities of medicine. This is reflected in the richness and complexities of our medical vocabulary. Consider how many words we have for cancer: malignancy, carcinoma, tumor, neoplasm, and related terms, as papilloma, adenoma, sarcoma, lymphoma, etc. If words fail us in describing cancer, how often are they unsuitable as descriptions of clinical encounters?
Symptoms and Signs
Doctors use the word symptom to refer to any type of subjective complaint, apparent only to the affected person. Examples of a symptom would be pain of any type, itching, dizziness, shortness of breath, fatigue, etc. A sign, on the other hand, is detectable by another person and sometimes by the patient himself. Examples of physical signs include swollen joints, heart murmurs, and blood pressure. Some phenomena can be both a sign and a symptom, such as fever, fainting, rash, cough, and hearing loss. In many of our modules on the Easydiagnosis website a sign or a symptom does not necessarily indicate the presence of a disease or condition. Then what indeed do we capture with these words?
On Syndromes, Conditions, Disorders, and Diseases
In general, a syndrome is a collection of clinical or laboratory findings occurring together. Thus, we have "epilepsy syndromes," "stroke syndrome," "dementia syndrome," "autoimmune," "Down's", "AIDS" and a dictionary of other syndromes. Sometimes this can present problems, especially when a syndrome is fictitious or invented. See this page.
What do we mean when we use the words diagnosis, disorder, or disease? Officially the game is seductively simple: We describe diagnoses (as well as injuries, procedures and even drugs) by an exquisitely extensive vocabulary, a convoluted classification scheme. In the U.S. and most countries this classification system has been based for decades on ICD-9, though there are numerous additional U.S. classifications, for example, CPT codes for billing, etc. Yet no coding scheme for medical diagnosis or treatment can be all-inclusive or unambiguous. Words like "abscess," "anemia" and "intersex", challenge any classification, so we slip into terms such as condition, or disorder in the belief that giving something a name still allows us to categorize it. Yet in reality a large number of patients cannot be diagnosed in the official sense of being reduced to an ICD code.
So, What Do I Have, Doctor?
Of the more than 900 million patients visiting U.S. physicians in last year, over 80% did so because of a symptom or symptoms. A New York Times medical article quotes estimates that unexplained symptoms are the reason for over 100 million doctor visits a year. A vast medical literature indicates that certain complaints, often described as "unexplained" are exceedingly common in the general population. The word "somatization" is used to describe patients whose emotional problems seem to be translated into bodily (somatic) complaints. Somatization is more accurate than the term "hypochondria" which carries a certain stigma. Large studies have shown that up to 80% or more of all healthy people (including you and me, Dear Reader) experience at one time or another a virtual mixed salad of unexplained bodily symptoms. Among the most common ingredients are: fatigue, weakness, irritability, faintness or dizziness, atypical headaches, a litany of joint and muscle pains, nasal congestion, insomnia, sleepiness, brief tinnitus, unexplained attacks of itching, transient weight loss, nausea, constipation, diarrhea, sweating, etc. The list is virtually endless. What most of these complaints have in common is their strange unprovoked, and often short-lived appearance, their physiologic and anatomic inconsistencies, their failure to conform to any well-defined syndromes or disease entities, and most important of all, their usually benign clinical course.
In a recent study devoted to Mind/Body ("Somatoform Disorders") at the annual meeting of the American Psychiatric Association, it was reported that somatisizing patients use twice as many outpatient and inpatient medical services as nonsomatizing patients do, at twice the annual cost. "The more physical symptoms a patient reports, the more likely he or she has a psychiatric disorder," said one investigator, Dr. Javier Escobar, a Professor of Psychiatry.
What Indeed is in a Name, Juliet?
Our attempt to identify everything with a name is nothing more than a delusional certitude that every patient carries an ICD-9 code. Seeking diagnostic perfection, doctors and patients alike feel comfort in the thought that naming is knowing and knowing is curing. Yet by attempting to give a name to every clinical presentation doctors are the cause of much medical mischief. In that enormous subset of patients, those with unexplained physical complaints, many are unhappy or dissatisfied with their physicians. An increasingly large number of these patients are subjected to extensive "workups," needless, often expensive, even dangerous testing, multiple physician visits, consultations, and "doctor shopping." Some fear they have cancer or some other potentially fatal illness. Others regard a referral to a psychiatrist as dismissive of their concerns.
It is possible, as many psychiatrists observe, that neurotics more often tend to feel problems in their bodies rather than in their psyches, but overwhelmingly, we are all of us susceptible to unexplained somatic complaints. As observing clinicians gradually learn, (though are almost never taught) do not to take everything too seriously too soon. This requires a sixth sense for the significant.
The most reassuring words a physician can utter when initially confronted with the bizarre or clinically unexplainable, are, "We see this; it will go away."
Martin F. Sturman, MD, FACP
Copyright 2005, Mathemedics, Inc.
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