After a procedure doctors said was extremely safe, something went terribly wrong. An otherwise alert and healthy patient isn't better and in fact, she's a lot worse. She's in a coma, or she may die, or at best, spend months in intensive care.
No one at the hospital explains to the patient's family what happened. Or why. Or how. It's a shock. The family thinks someone has screwed up.
Busy nurses won't answer questions, saying "you'll have to talk to a doctor." The doctors can't be found, or don't have much to say, or answer in vague, impenetrable jargon.
Enter frustration and anger. I know this because I've been in this situation with a loved one, getting crazier and angrier by the hour. And I know lots of others who have too.
"For a long time, organizations have really been in a 'deny and defend' mode," says Thomas Gallagher, MD, Director of the Hospital Medicine Program at the University of Washington Medical Center in Seattle. Gallagher, an internist who has had his share of these conversations, has spent the last 10 years working on the science and appropriateness of adverse event disclosure.
What should providers say and when should they say it? How much information is too much? What if no one is at fault?
And while healthcare organizations have written policies requiring disclosure, especially when a patient is harmed, how they implement those policies and what support they give to the communication process varies enormously, says Gallagher.