It was sometime in the mid-nineties that parents started showing up in my office with reams of paper. Inkjet printouts of independently unearthed information pulled from AltaVista and Excite. Google didn’t exist. In the earliest days of the web, information was occasionally leveraged by families as a type of newfound control.
A young father and his inkjet printer
One case sticks clearly in my mind. It was that of a toddler with medically unresponsive acid reflux and chronic lung disease. After following the child for some time, the discussion with the family finally moved to the option of a fundoplication (anti-reflux surgery). On a follow-up visit the father had done his diligence and appeared in the office with a banker box brimming with printed information. He had done his homework and his volume of paper was a credible show of force.
At the time in Houston the Nissen and Thal fundoplication were the accepted fundoplication procedures in children. Deep from the bottom of one of the boxes the father produced a freshly reported method of fundoplication from Germany. He had compared the potential complications with other types of fundoplication and this was the procedure he wanted.
What he didn’t understand was that an experimental technique used on a limited numbers of adults didn’t necessarily represent the best option for his toddler. I gave it everything I had but didn’t get very far. The tenor of his argument was slightly antagonistic. Ultimately there was nothing more I could do. I deferred the remainder of the discussion to one of our best ‘talking’ surgeons but knew the father wouldn’t get the time and consideration that I had offered.
I never saw the child again. As they say, the father voted with his feet.
Information is the new third party in the exam room
I recall this so vividly because it was the first time that a parent insisted that their own information should supercede better clinical judgment and the clear individual needs of a child. In hindsight, I believe, there was more to the encounter than a dialog surrounding a procedure. This visit was about a young father’s newfound capacity to defy a system that for years has marginalized patients.
This was the first of many encounters involving a theme that has come to define my work with patients: the contrast between information and good information. Information is the new third party in the exam room.
Since the mid-nineties I have worked with thousands of empowered young families. Any success that I’ve enjoyed stems from respect of the relationship that my patients have with their information. Despite the rare case where the encounter is seen as a struggle of perceived control, my vantage point of the patient’s evolving relationship with information has been remarkable.
Sometimes I feel like a witness to history.
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Great story. The inkjet printer will be replaced by an iPhone and some bookmarking app.
It is historical. The two main barriers are medical professionals who want to put Pandora back in the box (not gonna happen) and patients who don’t understand medicine (much easier to deal with than wrestling Pandora).
Oddly, with my daughter, I’ve not done any Googling. I have simply gone off her symptoms. For myself, Google has been priceless as has going back to school. I actually saved my grandmother’s life with what I know.
I wonder if we are going to see on a bigger scale what I observe in my health as a result of the internet and education; that I am much more accurate than any physician when it comes to my body.
M
I think as a patient, it will be up to me to try to “wade through” what is responsible information and what is general mainstream thought put out as scientifically/research backed information. However, even before the advent of Google et al, as a professional you still had to “fight” cultural/social/Aunt Margaret’s time honored info with your duty to educate patients.
Now, the pressure is further upon us as patients because we are forced to look at medicine as consumerism in a death match situation. If, we don’t *get* our problem from the beginning, what kind of doctors fees/specialist fees/Rx/imaging/labs etc are we going to waste? Doctors that we visit only have so much time, we are told, to see us. We have to be prepared with questions to get the most out of this time. We have to understand what may be going on so that we don’t get misdiagnosed (a big fear – time, money,pain,death). Doctors are educated people that follow well learned algorithms that lead them to such insurance allowed labs, treatments etc.
Our choice as patients are to just accept this, or try to understand and mediate between what we feel is going on with our bodies, and translate that with what you say is going on, and what we hope is the answer. Hopefully, as patients and doctors we can learn ways to get to these answers with less frustration and more communication on what is the best way to navigate this world.
And historically, as well as currently, I fight in the ICU as a Respiratory Therapist, the acceptance that medicine can cure all. That the television shows CPR, ventilation and life support as the be all end all – great bandage of life. But how can you explain to the grandchildren that chest compressions on Grandma’s ribcage will break all the ribs, CPR is violent, and that just because we placed them on the vent, they will not be fixed. Because TV shows like General Hospital or Grey’s Anatomy will “fix” anyone within their alloted time, and all will be well.
We fight mis-information in many ways, and it will always be so. Before or after the media. Good Luck.
In my part of world, the ‘mid nineties’ is just arriving ! People do come to the clinics with some homework. I don’t know what websites they are referring, but most of them are with almost half of the (and wrong) information they should have, that creates more problem than solution.
Our hospital has WiFi, and more than a few parents of children in the PICU sit at the bedside and surf the net for information in real time. I’ve been handed instruction manuals for the ventilators, guides to blood gas analysis, what a white blood cell count means, all sorts of things. I’m really fine with all that and never belittle it because it can serve as a useful springboard for discussion. Parents who do this a lot invariably come away with a feeling for the complexity and the many unknown (and unknowable) things in critical illness. For some kinds of parents, it does give them a real feeling of participation in their child’s care.
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