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The Mysterious Diagnosis: A Reflection on Comparative Effectiveness

June 7th, 2012

About a year ago, some medical symptoms that I’ve experienced for several years suddenly got worse.  Nothing really severe, but I was concerned enough that I wanted to know if this was just a flare-up of a condition I’ve had for quite a while or if it represented a new health problem.  I went to specialist I’d seen many times before and described the changes.  He sent me for a couple of diagnostic tests, and then scheduled an appointment once he got the results.

He thought I had developed a new chronic disease – let’s call it Condition X.  Not a life-threatening condition, but one that certainly affects quality of life and can be progressive.  He wanted me to immediately start treatment for this condition, which involved medications and a substantial change in diet.

Being a health services researcher and a physician, I wanted to know more about this diagnosis.  So I looked through my medical textbooks, read the latest articles, Googled the condition, and went over the diagnosis and treatment guidelines from specialty societies.  After this, I wasn’t at all certain that I really had Condition X, so I scheduled another appointment with my specialist.

“I’m not sure about this diagnosis,” I told him.  “Results from the diagnostic tests you recommended are equivocal – right on the border between positive and negative.  Also, much of the literature says that these tests aren’t very accurate or meaningful.  More importantly, I don’t have the characteristic symptom of Condition X.  The guidelines from your professional society say that in order to be diagnosed with Condition X, patients must have this symptom.  I don’t have and have never had this characteristic and defining symptom.”

“I know,” the specialist said.  “I’m familiar with the literature and the guidelines, and know that you don’t have the main symptom that is characteristic of this condition.  However, I’ve seen a lot of patients with Condition X in my years of practice, and I have a sense about who has Condition X.  Despite this other information, I think you have Condition X.”

I left my appointment with that specialist and haven’t been back.  I felt that if a physician were more confident in his feelings than in the objective evidence, then I didn’t want him treating me.  I didn’t start the treatment he recommended.  The worsened symptoms which triggered my concerns went away a few weeks later and haven’t returned.

This vignette provides a perspective on the currently controversial subject of comparative effectiveness.  Detractors argue that comparative effectiveness will lead to “cookie-cutter medicine,” that all patients will be treated the same based on summarized evidence, and that individuals’ differences will be ignored.  My experience suggests the opposite.

When physicians choose to downplay or ignore external objective evidence, they rely instead on internal “subjective evidence” – their experience, feelings, and intuition. Experience-based judgment is a critical tool for the practice of medicine, which requires making decisions under conditions of uncertainty.  However, when diagnoses are made based primarily on judgment and beliefs, it becomes easier to ignore evidence contradicting these beliefs, and many patients might be treated in the same manner because they seem to fit in a well-known and familiar category.   Thus, ignoring external evidence such as published studies and relying instead on internal beliefs to make diagnoses may be more likely to result in the “cookie cutter medicine” that comparative effectiveness detractors fear.

I don’t think that is how most physicians want to practice medicine, or how the U.S. public wants their physicians to practice.  Physicians do need to use their previous experience, judgment, and intuition – ignoring it would be harmful.  But ignoring evidence generated by comparative effectiveness, summarizing information from hundreds or thousands of patients, is also harmful.

Perhaps the critics of comparative effectiveness research need to consider the alternatives – do they really want medical decisions made solely on the basis of what their physician feels is correct, or would they prefer that all the information, including a physician’s experience and results from previous research, be used to make the best health care decisions?  This should be a rhetorical question, but given the fervent attacks on comparative effectiveness research that often appear today, it is a question that needs to be asked.

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1 Trackback for “The Mysterious Diagnosis: A Reflection on Comparative Effectiveness”

  1. The Pressure to Diagnose: Meador and Balint on The Physician’s Creed | Health Beat by Maggie Mahar
    September 6th, 2012 at 2:24 pm

4 Responses to “The Mysterious Diagnosis: A Reflection on Comparative Effectiveness”

  1. Clifton Meador Says:

    I am not sure where my comment fits into the ongoing conversation. After 50 years in teaching and practice, I have come to see that not every symptom or set of symptoms has a medical diagnosis to fit. What I am sure about is that every symptom has a cause . Most patients in primary care have stressors causing their symptoms either from home or work. I agree with the old dictum that says “what the mind cannot absorb goes to the body. ” I have written two books to these points; “Symptoms of Unknown Origin” for doctors and “Puzzling Symptoms” for patients.The insistence on a diagnosis is at the heart of medical excesses and false diagnoses. Clifton Meador

  2. R Lande Says:

    Excellent post! What Halpern talks about is very important to understand from a policy perspecitive. Dr Peter Bach wrote a good piece this week in the New York Times about how doctors learn from senior doctors, and then from there trust their instincts, without realizing why their experience might present faulty data. A recent Health Affairs post talked about some physician groups working on reducing the use of over-used tests, and the surprise from those who assume that overuse comes from financial incentives. I doubt that financial incentives are the largest culprit, but instead these habits that physicians fall into. many physicians just aren’t good scientists, and their subspecialization may lead them to rely even more on old habits, because their practice is not terribly varied.
    Attacks on comparative effectiveness research has always puzzled me. No one wants to rob doctors of the ability to make judgements- but we should expect them to do so with evidence.

  3. Thomas Cox Says:

    The problem here is that you relied on your gut instinct that you did not have Condition X and it guided your search through the medical literature and ultimately you made a decision to conclude that your specialist was wrong.

    In 2 – 10 years you may know for certain that you were right and your specialist was wrong. Or you might die in an accident in 6 months and nobody will ever know who was right.

    Americans are increasingly getting fast food restaurant medical care to bolster profits of insurers, managed care organizations and health care providers.

    Most of us non-physicians won’t get to a specialist – certainly not two visits and extended discussions of medical literature. Most of us will be lucky to get one 2 minute long office visit during which our concerns will be dismissed by an over-worked, over-booked, physician who was in the bottom half of their class at a foreign medical school. Our over-worked, over-booked, physician who was in the bottom half of their class at a foreign medical school will whip out a prescription pad and write a script for whatever the latest pharmaceutical samples came through last week and we will trot off to the pharmacy to fill the prescription.

    Two weeks later, if we are lucky, our symptoms will subside and we will think we have the brightest physician on the planet.

    I like your story, but it just doesn’t represent the care that most Americans get. If everyone could get the time and attention you could get we would actually have the best health care (finance) system on the planet. But we do not and we are not going to get any closer until we examine how we really finance health care in America.

    Attention to risk management will reap far greater rewards than attention to individual experiences and comparative effectiveness research.

  4. Christopher Hughes Says:

    “Life is short, art long, opportunity fleeting, experience treacherous, judgment difficult” – Hippocrates.

    I’ve also heard Hippocrates quoted this way, by a medical hisorian, “Experience is delusory.”

    But you get the idea.

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