Addicted To Diagnosis

Last week we saw a 7 year-old girl with eight days of sore throat and fever.  Her parents were frustrated: they had seen their doctor twice, another ED once, had three flu tests and two strep tests and blood tests that were all negative, had two different antibiotics that didn’t help, and still no answers.  She was getting more miserable, with worsening throat pain, continued fever, and now a swollen face and neck.  So, I’d like to take credit for making the clutch diagnosis, but my nurse Natalie beat me to it.  She assessed the girl first and made the call: “It’s mono.”  I went in, saw the girl for myself, and agreed.  The mononucleosis test came back positive.

The parents were overjoyed.  First, Natalie impressed them with her thoroughness: “You were the first to feel her neck glands.”  Second, they felt like we really listened to their story.  Finally, they had a diagnosis, knowing what was wrong and what to expect for the future.  Unfortunately it was more of the same- fever and throat pain. Mononucleosis is a viral infection that causes fever, fatigue, sore throat, and swollen glands.  As a virus, antibiotics can’t kill it- it must run its course, and mono can last weeks. We could only offer a course of steroids.  Sometimes steroids decrease the throat inflammation, pain, and swelling; sometimes not.

This story illustrates how people need answers for their pain and misery.  Ours was the fourth visit the family had in 8 days in their search for a diagnosis.Test after test had been run.  This craving for answers is a natural desire in patients and families and of course in doctors.  We all find comfort in diagnosis- finally to know what is wrong, and what to expect in the future.

Unfortunately, parents’ and doctors’ zeal to find answers can hurt.  A natural inclination when the diagnosis is uncertain is to order more tests, to try more medicines to see if something helps.  But tests have a price.  Too many xrays and CT scans mean radiation, which can cause cancer later in life.  To kids, blood tests mean needles, dread, and pain.  And needles and catheters can cause infections, invading the body with devices that introduce germs where they can thrive.

Starting medicines like antibiotics without a firm diagnosis can also cause harm. Antibiotics have side effects.  They can cause allergic reactions; vomiting, diarrhea, and cramps; and yeast infections.  Antibiotics don’t kill viruses, so giving them in cases like our girl above increases risk for more misery, with no benefit.

Another consequence of needing diagnosis is a phenomenon called “The Vulnerable Child,” where the diagnosis scares the parents into thinking their child is fragile.  This often starts with a benign diagnosis like allergies. The parents are happy to be given an answer, but then believe that their kid is now sickly. They become overly protective. They don’t let him go out to play or do sports. They limit his friends.  He grows up with less fun, more isolation, and less exercise. Though the child’s body is fine, the parents don’t see it that way, even after being told that he is basically healthy.  The Vulnerable Child can start with diagnoses like asthma, prematurity, even simple heart murmurs.

The best way to make diagnoses then, without unnecessary tests and drug trials, is with a thorough history.  Your doctor should get a complete story of your child’s illness, detailed from start to finish.  This takes lots of listening and lots of questions. The doctor then needs to do a thorough physical, looking for all the clues to confirm what the child’s history has suggested.  Doctors make 85% of their diagnoses by history alone; physical exams and tests usually only confirm diagnoses, not make them.

And patience is needed.  It can take time to make a diagnosis; disease can be slow to reveal itself.  Consider our girl from above with the sore throat- first impressions of cold viruses or strep throat are usually right, but it took eight days of treatment failure and negative tests and progressing symptoms to have “mononucleosis” jump out at us. A lot of those tests and the antibiotics could have been avoided.  So, don’t let an addiction to diagnosis get in the way of, well, the diagnosis.

Should I Order a Test, or Listen First?

It happens at least once per week that a family brings their child in with a frustrating problem.  The complaints are vague, like mild fever off and on for weeks or months, or headaches or belly pain, or odd rashes.  The problem has usually been going on for weeks or months and no doctor has been able to give the family a solid diagnosis.  The family asks me: “There has got to be some test to figure this out!”

There is a myth that the sophisticated technology of testing, whether it is blood tests, CT scanning, or MRI scanning, can diagnose all ills.  Patients and families believe it, and many doctors also fall into the habit of relying on batteries of tests to help them feel better about their diagnoses.

But this is not true.  The vast majority of tests provide us only with a hint that our diagnosis is on the right path.  Some tests, particularly CTs and MRIs, give too much information.  It happens regularly that we order a CT scan, find something that looks funny, and chase a phantom with further tests.  It is not unusual for a doctor and his patient to get caught in what I call the “medical vortex,” where one test leads to another.  After thousands and thousands of dollars of painful testing, the doctor finally says “nothing serious is wrong.”

When it comes to making a diagnosis, the old wisdom we all learned in medical school holds true: you make 85% of your diagnoses from taking the medical history alone.  As the father of modern medicine, William Osler, said almost a hundred years ago, “listen to the patient, he is telling you his diagnosis.”  The next 10% of diagnosis comes from the physical exam.  That leaves only 5% of cases where the test makes you go “Ah-hah, so that’s it!”  Again, tests mostly just hint.     

Thus if you ever have a family member with a medical problem that they just can’t figure out, make sure first that they are asking enough questions.  Make sure that the doctor is getting a clear picture of what is going on with the patient.  A thorough enough history almost always shows where others have missed a vital clue. 

 If the doctor starts doing tests, he or she should have a firm idea of how the tests are going to help make the diagnosis, rather than a vague notion that they will shed some light somewhere.  Before the tests, the doctor should have listened carefully to your story, asked questions exhaustively, and examined you thoroughly.  If so, he or she then probably doesn’t need the tests in the first place!

Do you have a story about missed diagnsosis, testing misadventure, and medical frustration?  Click on comments below and tell us.