There are few more focused, fearless advocates than parents with very sick children.
You'd think that people running a hospital for children would know that better than most.
But for some reason neither Dr. Michael Karpf, the smart, driven CEO of University of Kentucky Healthcare, which includes the children's hospital, nor those who advise him seem to understand that.
And that's why these days UK is getting national media attention and is the subject of an online petition that's drawing signatures from across the country for its refusal to release mortality data for pediatric cardiothoracic surgery patients, and not for its recent designation as a National Institutes of Health Cancer Center.
It's a bad decision to withhold the information, which other hospitals release, insulting to both the public that provides funds for UK, and the parents who have taken their seriously ill children to UK for care.
UK Healthcare should give up this fight, release the numbers and the results of an internal investigation into the program and get on with the work of medicine.
Remarkably, in an interview aired over the weekend with a CNN reporter, Karpf brushed aside parent and media demands to release information about mortality rates of pediatric cardiothoracic surgery patients at UK. First he insisted that parent requests had "not gotten to me" and then that "most of them would have a hard time understanding" the data.
This is remarkable, in part, because UK has been told by the attorney general's office, which has enforcement authority over open records requests in Kentucky, to release the data.
The order came after stories by former WUKY reporter Brenna Angel and other media reacting to the abrupt announcement that UK's star, $700,000-a-year cardiothoracic surgeon, Mark Plunkett, would no longer be doing the surgeries. Plunkett, who was on paid leave before returning to UK, never resumed the surgeries there and has since taken a job at the University of Florida. An investigation into the program has been going on since last year but UK says it isn't complete and it hasn't been released.
UK has never fully complied with the open records request or the attorney general's instruction to honor it, choosing instead to challenge that legally binding decision in court.
And Karpf didn't know people wanted this information?
That's bothersome but can be chalked up to ill-advised verbal gymnastics. More disturbing is Karpf's condescending insistence that the data might just be too complicated for the parents to understand.
Reverting to a patient-physician model that we thought went out with Leave it to Beaver, Karpf told CNN reporter Elizabeth Cohen, "you may be sophisticated and ask about data; most of our patients want to come in and want to be assured that we're committing to doing the very best we can."
Sadly, this feeds into every negative stereotype of physicians, especially surgeons, riding on some godlike cloud far above common mortals.
There's no excuse for withholding information from patients and their families. And there's no excuse for physicians who don't take the time to explain what's going on when terrified parents, sophisticated or not, must make life-or-death decisions about care for their critically ill babies.