Doctor as Detective? - Why Patients May Need to Get a Clue
I have always viewed doctors as medical detectives. Patients bring them clues in the form of symptoms and the doctors examine these clues, combine them with what they know, research what they don't know and come up with a diagnosis. Aha! Mystery solved.
Well, we all have our misconceptions, don't we? Turns out that doctors are more like factory workers. They take a quick look, use whatever information they already possess, and deftly sort patients into various, common, diagnostic baskets. If the patient doesn't fit easily into a standard basket, they get tossed aside into the reject bin to be dealt with later where they tend to collect dust.
There are many good doctors out there and some who still find a way to go above and beyond their most basic obligation to their patients and put genuine thought and effort into proper diagnoses and treatment. But many doctors do not.
According to a study by Jonathan Weiner of the Bloomberg School of Public Health, U.S. physicians are responsible for the health care of 400 patients (600 if they are HMO primary care physicians). Science Daily reports that the average patient sees his or her doctor for only 30 minutes per year with each office visit lasting only about 16 minutes or so. This amount of medical attention does not meet the recommended minimum for preventive care set by the Centers for Disease Control and Prevention.
Is it any wonder that patients with anything beyond a simple diagnosis are falling through the cracks? Doctors are simply too busy to play Sherlock Holmes so it is left to the patient to do his or her own sleuthing. And what do most doctors think about this? Some are happy to have educated, well-read clients, but many aren't too happy about it. Why?
Do doctors want their patients to remain ignorant? Not necessarily, but they worry that people without medical training will believe everything they read. They are concerned that our Google searches are leading us to all sorts of inaccurate information and that we will be misinformed. They fear that we will scare ourselves silly with what we read.
Sometimes the doctors are right. There is a lot of information out there and not all of it is reliable. When we read about side effects and complications we can scare ourselves. But is the solution for patients to remain ignorant while our doctors to remain too busy to find the answers for us? I don't think so.
My own physician is a very caring and competent woman. When I had a stress test that showed something potentially very serious, she recommended a cardiac catheritization. Not a fan of invasive procedures, I researched it on-line. My doctor became a little frustrated with me...she saw the need to hurry up and make sure it wasn't serious and I was taking a little time looking into things first. She said "Stop reading, you're getting yourself worked up for nothing." Her intentions were good, but I am the kind of person who has a need to know.
A friend of mine recently developed significant symptoms of hypothyroidism. She did some research on line to see what it was all about and her doctor told her "Stop looking stuff up on line and relax." Same good intentions.
Sometimes though, we need to be looking stuff up on line. Sometimes doctors don't know everything, sometimes they are wrong, sometimes they can't figure out what is wrong with us. What then?
Two recent stories on ABC News illustrate just how important a little research can be. The first story was about a woman who had a severe body odor. Camille had been this way her whole life and it had caused her a great deal of emotional pain. The odor was at times severe enough to fill a room and had nothing to do with her hygiene. She had lost friends, had to quit her job as a teacher and had become more and more isolated. Doctors had no clue what was wrong so they prescribed various medications. The patient spent $27,000 and had 8 unnecessary procedures and surgeries.
Despondent over what had become of her life, the patient did a Google search under "fishy body odor." Within seconds she had her answer. She had a rare genetic disorder that caused a build-up of TrimethylaMinuria (TMAU) in her body. This chemical produces a foul odor that permeates the person's entire being. No amount of washing or perfuming could remove or cover it. What could help? It turns out that an extremely restricted diet limits the build-up of TMAU. That combined with chlorophyll tablets has made a difference.
The mystery illness that Camille's doctors were incapable of diagnosing, Camille herself uncovered in seconds on the Internet.
ABC News also introduced us to Adrian McLeish. McLeish is a musician who developed a hearing problem. He didn't begin to lose his hearing; quite the contrary. McLeish began hearing too much.
Over twenty years ago, McLeish became able to hear his own internal bodily noises. He could hear his heart beating, his footsteps pounding and vibrating and his own voice reverberating in his head like a kazoo. It was a mere nuisance at first, but the sounds became louder and louder over the years. He had to quit playing in the orchestra as his condition became debilitating.
McLeish's doctors couldn't find an explanation. They thought his problem must be neurological so they prescribed various medications. McLeish also endured unnecessary surgeries.
Fed up, McLeish decided to do some research on his own. So he "Googled" his symptoms. Voila! Within minutes, McLeish had a name for his disorder. "Superior Canal Dehiscence" (SCD), a problem with one of the ear canals. The bone that separates the canal from the brain thins. As a result, sound gets transmitted from the body right to the brain as if passing through an amplifier.
McLeish not only found the cause of his symptoms, but a solution. In 1995, the physician that had discovered and named this disorder had also developed a treatment. McLeish contacted the doctor, had the procedure and his life is now back to normal.
What doctors could not diagnose for over twenty years, McLeish uncovered in a few minutes on the Internet.
Interesting isn't it? These stories both fascinate and infuriate me. When I express my amazement that doctors can't seem to find the information that patients discover with the click of a mouse, people say to me "Well, doctors are too busy to be doing that." Really? Well, yes they are busy...but a few minutes on line for the occasional case that doesn't fit neatly into a common diagnosis? After all, that is a physician's job, is it not?...to evaluate a patients symptoms and find a diagnosis? And if the doctor can't come up with a quick diagnosis off of the top of his head, isn't he obligated to do a little research or discuss it with colleagues?
Even if the doctors themselves are too busy, most doctors I know have physicians assistants, nurse practitioners and nurses on staff. Couldn't they pay them for an extra half an hour at the end of the day to do a little on line research once in a while?
Maybe my anger and frustrations is misplaced. Perhaps my complaint shouldn't be with the over-worked doctors but with the health care system that makes them that way. I'm not sure who is to blame, but I do know this; I've been dealing with the same symptoms for the last ten years and haven't gotten an answer to my problems yet. So, the next time my doctor tells me to stop reading stuff on the Internet, I'll tell her "when you start reading stuff on line, I'll be more than happy to stop."
Need to do some medical research on line? Here are some of the more reliable places to look for accurate medical information:
I share your frustration with this, and it's hard to know who to blame. I know my doctor's office routinely schedules more than one patient in the same time slot with the same doctor and it is rare to spend more time with the doctor than you spend in the waiting room. You would think that under these circumstances doctors would be happy to have well-informed patients who have researched their symptoms, but that often isn't the case.
Not too long ago, I went to the doctor having done my research, reasonably certain that I knew what was wrong. I explained my symptoms and my suspicions as to what the underlying problem was, but as soon as she heard the first few symptoms she stopped listening and shuffled me out the door with a prescription for a secondary problem but no treatment for the underlying cause. Weeks later, I saw another doctor and discovered that I had been right all along. I might have avoided further problems if she had simply listened in the first place.
I rarely go to the doctor, and it would be nice, on those occasions when I do, to feel like she is actually listening to me and carefully considering my situation instead of feeling like she is just waiting to slap a convenient diagnosis on me and move on to the next rushed appointment.
Posted by: Deb | March 17, 2008 at 09:23 PM
Deb,
Thanks for your input. Some doctors seem more attentive than others, but the desire to slap a quick diagnosis on you remains. My primary care physician is a good listener, but I saw a neurologist recently who would ask me questions and then cut me off mid-sentence as I was trying to answer. After a while, I figured out that he had read my paperwork and formulated a diagnosis before he ever spoke to me. When I would get to the part of my answer that seemed to confirm his theory, he would stop listenting.
Consequently, he only has part of the information and I will likely end up with ineffective treatment (unless I arm myself with plenty of information, which I plan to do). I also plan to be more assertive at my next appointment insisting that if he is going to ask me questions, he needs to wait and actually listen to my answers.
I'm sure that'll go over well!
Posted by: Lori@betweenusgirls | March 18, 2008 at 06:08 AM
Lori,
Lawyers are in my experience akin to doctors when it comes to their expertise. Often, they rely on client to suggest and/or write documents and they then use that as working document. It's amazing to pay someone over $100 an hour to find out that their expertise is nowhere near what I pay them for.
Great post.
Shilpan
Posted by: Shilpan | successsoul.com | March 18, 2008 at 08:32 PM
Shilpan,
It is frustrating when you pay such a high price and then don't get your money's worth!
I have had doctors and dentists discuss options and them ask me "Well, what would you like me to do?" While I am not the type to do whatever a doctor tells me, following along blindly, I also don't like it when a doctor refuses to recommend what he or she believes is the best course of action. Sometimes I have said,"You're the expert, what do you think I should do?" only to be answered with ambiguity.
In the US, where we spend more on health care than any place in the world, I expect better than this.
Posted by: Lori@betweenusgirls | March 19, 2008 at 06:59 AM