Evidence versus experience based medicine for patients

by Dennis Grace

The Internet’s been rife, lately, with discussions of evidence-based medicine (EBM) and its alternative, experience-based medicine (which, to avoid conclusion, I’ll call XBM).

Look up either phrase on Google if you want more details, but be warned, it’s like trying to get a sip from Niagara Falls. Ideally, though, EBM is guided by information generated by studies conducted as rigorous, double-blind, randomized, controlled trials published in reputable journals, which can then be vetted by experts. XBM, on the other hand, lacks rigor, lacks distinct controls, draws heavily on anecdotes, and leaves many questions open-ended.

For any patient who wants to be involved with her own life and death decisions , the EBM versus XBM problem comes down to a few simple questions: is one more valid than the other? Always? If not always, when? For doctors, the EBM/XBM choice is usually a simple matter of available data. EBM can’t possibly take all possible variables into account, so EBM will always be only a partial answer—even after a dozen or more studies (many of which just repeat themselves with minor corrections). XBM, on the other hand, provides  little documentation, might rely as much on analogy as on pertinent data, and offers no blinds to avoid objectivity, all of which makes it difficult to know how much of XBM to trust. From the patient’s viewpoint, the EBM/XBM problem usually arises only through communication. Assuming the patient has had no access to the internet or library before seeing an oncologist, the patient’s knowledge is initially a matter of how much the doctor actually tells her. Let’s look at both EBM and XBM in action.

First, consider the following two examples for a single case. Mr. Patient has just been diagnosed with early stage four cancer (metastasized, widespread, fairly large tumors) of the blank (a vital organ). Left untreated, Mr. Patient will likely not live out the year. So, let’s leave out all the possible questions about the diagnosis and just look at treatment options.

Example one: an oncologist, Dr. Maiweh, who has never met the patient strolls into Mr. Patient’s room and tells him, “Mr. Patient, I’m your oncologist. You have advanced cancer of the blank. I believe your best chance for survival is a series of Whoopikin III infusions. So, I’ll talk with your primary and get you scheduled as soon as possible.”  Dr. Maiweh departs, his eyes never leaving the charts in his hands.

Example two: Mr. Patient’s primary care physician enters with a woman in a lab coat whom he introduces to Mr. Patient as Dr. Newstart, an oncologist. Dr. Newstart says, “Mr. Patient, I’m sorry to have to inform you that you have stage IV cancer of the blank. Stage four means the cancer is advanced; the MRI shows that it has metastasized to other organs, but you’re actually lucky we caught it when we did. At your stage of this disease, the evidence tells us you have a chance for survival with Whoopikin III infusions. Whoopikin III only offers a 25% chance for recovery, but the majority of that 25% were in your age range and just like you had red hair and were otherwise healthy, active people. I want you to keep that in mind: you’re probably on the winning team. I know this is a lot to absorb in one chat, so I’m leaving my card. If you have any questions, feel free to call. I’ll also have my assistant send over some additional material on your cancer and what you can expect from the treatments. So, for now, any questions?” Dr. Newstart sits on the edge of the bed and makes eye contact. She shakes Mr. Patient’s hand, hands him her card, and departs.

Example two, though abbreviated slightly (Mr. Patient might—shock notwithstanding—have had some questions), demonstrates several aspects of EBM communicated well, from a patient’s point of view:

  • Who is this new doctor?
  • Does my PCP know she’s here?
  • What is the basis for her treatment choices?
  • What if I don’t understand those choices?
  • Finally, of course, she demonstrates the all important willingness and desire to answer questions.

In example one, Dr. Maiweh, shows a great example of how to know that Mr. Patient needs a new oncologist (unless, perversely, Mr. Patient draws comfort from egomaniacal know-it-alls), possibly a new hospital (one that’s proud of its doctors’ bedside manners), and possibly even a new PCP.

We’re patients, not lab rats. We want to know what our doctors going to do to us and why. Most importantly, if we don’t agree, we want to be able to say no.

Dennis Grace is co-founder of MedicalBillDog.com and blogs at The BillDog Blog.

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