Doctor patient relationships,, information limbo, -Your Doctor and You - Second in a Series

Information Limbo

“Limbo is not a good place to be.”

Bill Joy (1954- ), Chief Scientist and Co-Founder in 1982 of Sun Microsystems

• You’re confused.

• You have a chronic disease, not curable but controllable.

• You’re taking a drug to treat the diseas.and you have read the long list of side effects.

• You have seen the drug advertised on TV.

• You have googled the disease and the drug.

• You have joined an Internet disease support chat group.

• You remain befuddled about what to do.

Things aren’t going well. You’re still feeling ill. You’ve seen multiple doctors, each of whom has a slightly different opinion and who may have prescribed another drug. You’ve obtained a second, third, and fourth opinion.

You’re in disease information limbo.

Information Overload

You’re suffering from information overload. It’s nobody’s fault in particular. You’re doing the best you can to find straight answers. You want to understand the options. Your friends, spouses, and relatives are trying to help, but there is simply too much information to absorb and digest.

You’d like to trust the drug companies, but those long lists of side effects frighten you, and drug costs are becoming prohibitive. And even though drugs are field-tested and marketed at considerable expense and are Federal Drug Administration approved, you’re aware drugs like Vioxx harbor unexpected complications.

Your doctors are doing their best to prescribe the right drug, which to the best of their knowledge, works. But the media is telling you drug companies are unduly influencing doctors with luncheons, gifts, and consulting fees.

The Internet web sites – some containing neutral information, some biased with information relating to their product, much of it unfiltered by editors or experts – are trying to keep you informed – or to sell you something.

Parts of the Information Limbo Problem

Parts of your limbo problem are,

• No precise “scientific” answer exists for each individual patient for every problem. Everybody has a different set of genes and reacts differently.

• Much medical knowledge lies in the “gray zone.” Anecdotal stories may say something works, but solid unequivocal scientific evidence is lacking or conflicting.

• A subtle and sometime profound interaction exists between mind, body and spirit. This is the “placebo effect.” If you trust doctors, you respond better. If you believe a drug is helping, it will. Prayer may work but sometimes not(“Long-Awaited Medical Study Questions the Power of Prayer, New York Times, March 31, 2006).

• Then there is Internet misinformation. Internet vendors have a product to sell an ax to grind, and they grind it – whether it holds scientific weight or not. Infomercials hype products with “antioxidant” powers to destroy those “dangerous free radicals,” and you wonder if this is too good to be true.

• The “fragmentation” of the system contributes to your problem. Medicine is divided into 50 or so different specialties. Many specialties function apart from one another, and some specialists do not know what other specialists are recommending or prescribing. Presently no common patient record is accessible to all doctors that keeps all caregivers across the health care spectrum coordinated and informed.

• You may not be complying with the doctors’ instructions. As many as 30 percent of patients never fill their prescriptions, stop taking the medicine, fail to follow the dosage schedule, or randomly take the pills of spouses.

Next blog -- Ending information limbo