Even though I’m notoriously healthy, I once had symptoms, leading to a test that appeared to show bad news. The hospital told me I needed to have an in-person meeting to discuss the test results. I refused. We compromised on a virtual meeting with a very tired resident who couldn’t answer my questions. I changed doctors and hospitals and vowed never to do this again. The news turned out to be not bad at all.
The memories of this experience came back when I read an article in MedPage Today: Is Getting Test Results Online Right Away a Good Idea? Yes, Patients Say.
Doctors were nervous about releasing test results via the portal. The patients loved it.
They’d already been standing by, knowing the results could be bad. Many of them had resources at home. (Quite honestly, I think my cat was a better support source than what the hospital could provide.)
My favorite part of the MedPage article was a quote from a patient advocate Grace Cordovano, Ph.D., of Caldwell, NJ. She points out that patients get outrageous, large, and sometimes erroneous bills every day.
“They open those bills, unsupported. But we don’t stop sending bills because they might cause harm and I can assure you, the bills are causing harm to patients. I’ve watched people contemplate divorce, want to flee the country, contemplate bankruptcy, forgo treatment.”
What the article doesn’t say: Even if you react to the news with dismay and you’ve got loads of questions, nobody’s there to help you. It’s rare to get immediate contact with a doctor in the relevant specialty.
Your contact person will spout the party line. They’ll tell you the official treatment guidelines. They often don’t have a full understanding of the outcomes associated with the guidelines. You still have to do your own research.
How it really works: Every medical professional should read Dr. Moshe Frenkel’s article in The Oncologist. He describes a woman who questioned the guidelines. Diagnosed with Stage 3B invasive breast cancer, she wanted to avoid hair loss and other side effects following surgery. Digging deeper, she learned that chemotherapy would reduce her risk of survival by only 6%. She turned down the chemo and (despite her oncologist’s dire warning) was still alive and thriving more than 15 years after the surgery.
Lessons to learn:
(1) The medical establishment tends to infantilize patients, assuming they can’t handle bad news or second-guess the guidelines. It’s important to know your rights.
(2) Every time you take a test, you risk getting bad news, especially if your test was given following a symptom. You’ll need a plan to receive the news as well as a plan to research the outcomes of recommended treatment.
(3) And there appears to be a massive disconnect between what patients want and what the medical establishment thinks patients want. That’s the real message of the Medscape article.