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Article: Dealing with Patients Who 'Know More Than You Do' About Their Illness

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Dealing with Patients Who 'Know More Than You Do' About Their Illness

Leslie Kane, Other, 10:35AM Mar 4, 2010


A woman whose daughter had Glycogen-storage disease type 1 was in the ED because her daughter's blood glucose level had plunged to 20. The 40-ish ED physician wanted the daughter, who was vomiting but not displaying other severe symptoms of hypoglycemia, to drink cola soda as an emergency measure.


The mother, who had previously experienced these episodes with her daughter and had read extensively about the disease in numerous medical journals, told the physician that he should start an IV immediately.


The physician asked sarcastically, "Are you a doctor?"


The mother, not a clinician, replied, "Yes! I'm a doctor for this specific person and this specific disease. You've had one lecture on this and I've had four years of experience."


She felt that her years of educating herself about the disease and her first-hand experience with her daughter gave her more expertise with her daughter than the physician who had just come onto the case.


The physician was taken aback, but started the IV.


Consider the Source


Some physicians appreciate and make use of a patient's or family member's knowledge. Others consider it an annoyance, especially if it's based on information from questionable or offbeat sources.


"There are patients with uncommon diseases who, through first-hand experience as well as specialty-specific readings, do become as well as or better versed than their physician," says Gregory A. Hood, MD, internist with Drs. Borders and Associates, Lexington, KY, and president-elect of the Kentucky chapter of ACP. "In these cases, it does work to establish a partnership/alliance with the patient.


"The good patients like this recognize that there are still consequences and unintended consequences of treatments and choices for which it is beneficial to have a physician's training and experience," he says.


Hood's analogy: "There are expert mountain climbers who try to tackle professional grade challenges without a Sherpa, or without fully accounting for the Sherpa's advice and experience. Their biographies don't tend to work out too well. When the expert climber works together seamlessly with knowledgeable Sherpas then the best outcomes are realized."


The trend is definitely for patients to be much more involved in their own care. For example, the Society for Participatory Medicine (www.participatorymedicine.org) encourages health care as an equal partnership between patients and health professionals and encourages and expects active involvement by all parties.


And the growing popularity of patient advocacy organizations points up many patients' feeling that they need to take matters into their own hands. Such organizations typically promote 'partnerships,' but some relationships end up being adversarial.


While most, if not all, doctors appreciate having an educated and motivated patient, not all visits with VIPS (Very Informed Patients) are positive.


What's typically off-putting is the accompanying attitude. We all know that some people are likeable, diplomatic, charming, and others are--well, the opposite. Patients whose demeanor bespeaks respect and collaboration evoke different responses from those whose attitudes say, "Hey, why don't you know as much as I know? What am I paying you for?"


As adults, we're supposed to have the self-awareness and maturity to not bristle when our knowledge, expertise, or self-image is questioned. Sometimes that's hard when you're also dealing with reimbursement woes, a backed-up waiting room, and other typical challenges of running a medical practice.


Still, real or imagined assaults on our ego are constant throughout life, and self-reminders about keeping an equanimous attitude can sometimes save the moment.


Practice Tip: You can help yourself by improving patient understanding of the difference between a useful medical source and a quack or non-authoritative source. One way is to provide a patient information print-out in your waiting room; an article on your practice website, or an item in your practice newsletter.


Talk about these questions: What is a trusted medical source? What's the difference between a clinically-tested treatment and a treatment based only on one person's story?


Some good sources for this information include:






Do you prefer when patients do their own research and feel they are very knowledgeable about their treatment? Do you feel this helps you or causes more situations that take time to deal with? Let us know how you feel!!!



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I WISH doctors would listen to us. Everytime I start talking to them like I know anything about Cushing's their eyes glaze over and they put up a huge wall... then get pissed off. What are we supposed to do, sit back and just listen when we know they are wrong??? UUGGGG

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