On taking my mother to the emergency department recently, I was given a binder filled with 32 pages of orientation materials, privacy notifications, descriptions of patient rights and responsibilities, and other paraphernalia, in addition to a five-page consent form for general medical care. I read it only out of sheer boredom while waiting 6 hours for test results to come back. The 47 pages of information in the discharge packet 2 days later were never read. But what I really wanted was a CD copy of her MRI to take to her follow-up appointment with a different doctor. That, I was told, could be obtained only from Health Information Services, which wasn’t open on a Sunday.
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ACEP News: Vol 30 – No 08 – August 2011This experience has strongly reinforced my prior belief that idolizing autonomy can become counterproductive. Some people have the notion that maximizing autonomy is achieved by increased information sharing, or more practically, adding another form. The word camouflage comes to mind. You can’t see the forest for the trees. A hospital a few years ago wondered whether it should notify patients that a surgical resident might perform part of the procedure. The best advice seemed to be yes, include a sentence about that on the consent form. Almost no one will ever see it.
Medicine desperately needs its own version of the Paperwork Reduction Act of 1995 (PRA). I say this not to reduce the burden on the physician, but as a patient advocate hoping to improve the focus on important facts, thereby actually enhancing decision making rather than obfuscating it.
Per Wikipedia:
“The PRA mandates that all federal government agencies must obtain a Control Number from OMB [Office of Management and Budget] before promulgating a form that will impose an information collection burden on the general public. Once obtained, approval must be renewed every 3 years. In order to obtain or renew such approval, an agency must fill out OMB Form 83-I, attach the proposed form, and file it with OIRA [Office of Information and Regulatory Affairs]. On Form 83-I, the agency must explain the reason why the form is needed and estimate the burden in terms of time and money that the form will impose upon the persons required to fill it out.”
Having government paperwork to reduce paperwork seems a little, no, a lot oxymoronic. However, the administrator of the OIRA appointed by President Barack Obama is Cass R. Sunstein, one of the authors of a book called, “Nudge: Improving Decisions about Health, Wealth, and Happiness.” Advertisers have accumulated a vast science on how to influence people to buy things they don’t need. “Nudge” suggests it is time to use that research in behavioral economics to nudge people to default toward making good decisions. This approach, called libertarian paternalism, may also seem like an oxymoron. But then, lately, so is the term informed consent.
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