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Understanding Treatment: The Communication Disconnect Between Doctors And Patients

Over the long week­end I caught up on some read­ing. One arti­cle* stands out. It’s on informed con­sent, and the stun­ning dis­con­nect between physi­cians’ and patients’ under­stand­ing of a procedure’s value.

The study, pub­lished in the Sept 7th Annals of Inter­nal Med­i­cine, used sur­vey meth­ods to eval­u­ate 153 car­di­ol­ogy patients’ under­stand­ing of the poten­tial ben­e­fit of per­cu­ta­neous coro­nary inter­ven­tion (PCI or angio­plasty). The inves­ti­ga­tors, at Baystate Med­ical Cen­ter in Mass­a­chu­setts, com­pared patients’ responses to those of car­di­ol­o­gists who obtained con­sent and who per­formed the pro­ce­dure. As out­lined in the article’s intro­duc­tion, PCI reduces heart attacks in patients with acute coro­nary syn­drome — a more unsta­ble sit­u­a­tion than is chronic sta­ble angina, in which case PCI relieves pain and improves qual­ity of life but has no ben­e­fit in terms of recur­rent myocar­dial infarc­tion (MI) or survival.

The main result was that, after dis­cussing the pro­ce­dure with a car­di­ol­o­gist and sign­ing the form, 88 percent of the patients, who almost all had chronic sta­ble angina, believed that PCI would reduce their per­sonal risk for hav­ing a heart attack. Only 17 percent of the car­di­ol­o­gists, who com­pleted sur­veys about these par­tic­u­lar patients and the poten­tial ben­e­fit of PCI for patients fac­ing sim­i­lar sce­nar­ios, indi­cated that PCI would reduce the like­li­hood of MI.

This strik­ing dif­fer­ence in patients’ and doc­tors’ per­cep­tions is all the more sig­nif­i­cant because 96 percent of the patients “felt that they knew why they might undergo PCI, and more than half stated that they were actively involved in the decision-making.”

What we have here is a study of informed con­sent, set up in a way that the doc­tors knew the study was ongo­ing — because they and their patients were par­tic­i­pat­ing, all in one divi­sion of one hos­pi­tal — and pre­sum­ably spent, if anything, more time and not less than usual talk­ing with patients and answer­ing ques­tions about the pro­ce­dure. (Note: this par­tic­u­lar point is an assump­tion on my part, sup­ported by the reported fact that 83 percent of the patients reported that their ques­tions had been answered.)

The cen­tral find­ing is a fail­ure of com­mu­ni­ca­tion between doc­tors and patients about the poten­tial ben­e­fit of the pro­ce­dure: 88 percent of the patients, who’d signed con­sent, thought that PCI would pre­vent heart attacks and only 17 percent of the car­di­ol­o­gists at the same med­ical cen­ter thought the same. This mat­ters, first, because over a mil­lion peo­ple in the U.S. undergo angio­plasty each year and, more broadly, because it rep­re­sents an every­day out­growth of the  phe­nom­e­non of ther­a­peu­tic mis­con­cep­tion — when patients think a pro­ce­dure has a greater poten­tial ben­e­fit than it does.

The con­cept of  ther­a­peu­tic mis­con­cep­tion, as was ini­tially defined nar­rowly in the con­text of clin­i­cal tri­als, applies to all areas of med­i­cine. In can­cer treat­ment it’s a big deal but, in my expe­ri­ence, under-addressed. A com­mon mis­con­cep­tion among breast can­cer patients, for exam­ple, con­cerns the ben­e­fit of adju­vant chemother­apy, which gen­er­ally reduces the odds of recur­rence by about a third. So if you have a stage II tumor with good mol­e­c­u­lar fea­tures and the odds of recur­rence are some­where around 15 percent, that comes down to around 10 percent with the treat­ment, which does bear sig­nif­i­cant side effects and risks. Another fairly com­mon mis­un­der­stand­ing in oncol­ogy is in the area of Phase I clin­i­cal tri­als, in which the drugs are tested for toxic effects in humans, and to see how much peo­ple can with­stand, and not for ther­a­peu­tic effect.

This topic is wor­thy of lots more dis­cus­sion than I can afford here. I do rec­om­mend read­ing the full arti­cle, includ­ing the meth­ods about how the sur­vey was done, and the edi­to­r­ial* in the Annals, which accom­pa­nied the paper, which like so many other provoca­tive and sig­nif­i­cant reports in the med­ical lit­er­a­ture, didn’t get much atten­tion in the lay press.

One point the edi­to­r­ial con­sid­ers is that, per­haps, the PCI con­sent form used by the study authors and said to be at a 12th-grade read­ing level, should instead be pro­vided at an 8th-grade level, as some insti­tu­tions rec­om­mend and require. I’m not so sure about this, because I think a lot of med­ical ideas and deci­sions sim­ply can­not be com­mu­ni­cated at a lower level with­out loss of con­tent, i.e. nuanced information.

I’m eager for read­ers’ views on this: How often is it that doc­tors effec­tively con­vey why a pro­ce­dure should be done or a treat­ment be given, and what might be done to improve the process?


*sub­scrip­tion required

*This blog post was originally published at Medical Lessons*

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2 Responses to “Understanding Treatment: The Communication Disconnect Between Doctors And Patients”

  1. I suspect that we physicians tend to sanitize our speech when we are having informed consent discussions. When we believe that a procedures is the right choice, I suspect this affects how we package it to the patient. The converse is also true. Nice post, Elaine.

  2. Thanks, Michael. I agree – it happens both ways.

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