Before patients can become savvy consumers of healthcare, they need information about their healthcare choices. Too often, such information is nearly impossible to get, especially when it requires doctors to give patients useful statistics about things like treatment side effects.
Since publishing Critical Decisions this fall, I have received a number of emails from readers who have recognized their own medical histories in the pages of my book. I received a particularly entertaining email from a professor in Canada, who relayed the following story.
He was in an emergency room suffering from kidney stones. And for those of you who have never experienced kidney stones, take it from my mother: they are insanely painful. “Worse than having twins,” she told me. (And this from a woman who, when I asked her how much it hurt to give birth to me, answered: “Ever tried to fart a football?”)
Suffice it to say, then, that Professor Mike was in a whole lot of pain, at least until they gave him a dose of morphine. Then they decided they needed to further diagnose his problem.
“You need a kidney x-ray,” he was told by the emergency room physician. Such an x-ray can show whether a huge stone is causing a dangerous blockage of urinary flow. Professor Mike nodded obediently. Then an x-ray tech showed up at his bedside and the conversation went something like this:
“You need to drink this dye before your x-ray.”
“The dye does have some side effects. It could cause a rash or it could cause death,” the tech continued. “Just sign here and we can take you to radiology.”
“Umm, are you telling me that the chance of a rash is the same as a chance of death?,” Professor Mike asked.
“Umm, there is a small probability of either one happening.”
“What, exactly, are those probabilities?”
The tech turned and left the room, frazzled by the professor’s unwillingness to sign the informed consent document without more information. A couple minutes later, the radiologist returned: “I understand you want more information. But we are reluctant to give patients specific probabilities of side effects, because we have learned that such numbers confuse them.”
Professor Mike, with his advanced training in statistics, was unlikely to be confused by a few simple probabilities, so he pushed back and asked the doctor to give him estimates: “I don’t know them,” the radiologist responded.
“Don’t know them? So what’s the real reason you don’t tell patients—you think the probabilities will confuse them, or you don’t know the probabilities?” Professor Mike, even with morphine coursing through his system, kept a clear head in the face of this absurd situation. He decided to help the radiologist think through the issue:
“Approximately how many x-rays like this has your hospital done in the last few years?,” he asked.
“Oh, at least 350,” the radiologist responded.
“And how many deaths?”
“Ok,” said Professor Mike. “I will sign the form. But if I die, my wife will sue the hell out of you, because this is not informed consent!”
Peter Ubel is a physician and behavioral scientist who blogs at his self-titled site, Peter Ubel and can be reached on Twitter @PeterUbel. He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together.