When a Result is Not a Result
My husband reached a milestone a few months ago – his first screening colonoscopy. The prep and procedure went surprisingly well; he looked good and seemed “with it” when he came out of the procedure room (although I found out later he remembered next to nothing!). According to the nurse who reported out, he had one polyp; they removed it. It was small, about 5 mm in diameter. She showed me a picture of it. She said they would biopsy it and let us know the results.
About three days AC (After Colonoscopy), a letter arrived. It seemed to be an informational letter about Tubular Adenoma Polyps, what they are, how they may be pre-cancerous. The last line of the letter said my husband was recommended for re-screening in five years.
We were both confused by the letter. Was his polyp a Tubular Adenoma Polyp or some other kind? It says they MAY be precancerous – that’s a scary sentence. Was his polyp pre-cancerous? If it was, does that make a difference? Why was “polyp” plural throughout the letter when the nurse said he only had one polyp? Did he really have more than one? Did they biopsy it/them? What was the result of the biopsy?
The letter did NOT say, “Your polyp was not cancerous.” The letter did NOT say “The results of the biopsy on your polyp were negative.” The words results and biopsy weren’t anywhere in this letter. My husband was perplexed. His exact quote was “My little engineer brain is looking for a test result. I can’t find it in this letter.” So we waited a few more days, assuming that a “results” letter or phone call would arrive.
When none was forthcoming, he called the office to ask for clarification. Now, we’re not sure whether he was speaking to the receptionist, a nurse, a CNA, a PA or a physician. They don’t really make the distinction when you call and my husband didn’t think to ask. He called the office and assumed, like most of the population, that he’d get a thoughtful, medically appropriate answer. The response was stunning, and not in a good way. The person told my husband, “The name of the polyp tells you it’s benign.” Really? We re-read the letter. It didn’t say benign tubular adenoma polyps. So, exactly how should my engineer-brained husband be able to ascertain that tubular adenoma polyp means benign? Especially when the text also says that they may be pre-cancerous? She offered one other helpful bit of advice. “You can look it up on WebMD and see what it means.” Really? Really? We go to the physician; they do tests and procedures; they send us a letter but we, the people with little engineer brains, the paying customer (!), have to go online and interpret the results ourselves?
An aside: I entered “tubular adenoma polyps” into the search box on WebMD. It returned an overview of colon polyps. No mention of tubular adenoma polyps. I had much better results on Wikipedia.
The reporting of the results was incongruous to the prep. There were four phone calls prior to the colonoscopy to make sure he did the prep just so; they canceled two scheduled colonoscopies because he had taken a medication they deemed unsuitable. They put a great deal of time and effort into making sure he understood everything leading up to his colonoscopy; too bad they couldn’t put a little more effort in reporting out the results so that the “little engineer brains” of the world would understand.
I have two suggestions. First – don’t let your front-line staff direct patients to a third-party website for medical information, especially if you are not 100% sure of the website content. Second – carefully review the discharge instructions and reports you give patients. We aren’t physicians or nurses. We have no clue what “tubular adenoma polyp,” or many other common medical words mean. We can, however, understand “You had one polyp and we removed it. Your polyp was a tubular adenoma polyp. The biopsy of your polyp was negative and showed no evidence of cancer. Sometimes tubular adenoma polyps can be pre-cancerous, but yours was not. We recommend you for re-screening in five years.” Trust me; it’s much better to personalize the result, be succinct and direct; and it’s impossible to overstate the obvious for the non-medical brains out there.
Shelley Burns is the Director of Knowledge Management for HMC, Inc.
