An internal review of the University of Kentucky's pediatric cardiothoracic surgery program does not address why the program was voluntarily shut down last fall, despite numerous calls for transparency from affected parents, some of whose children died.
The only clues are in the task force's recommendations, which call for a total revamping of pediatric cardiac care at UK, including the creation of a new, dedicated intensive care unit for pediatric heart patients, staffed by doctors and nurses with special training.
The new report's contents surprised Tabitha Rainey, whose son, Waylon, was operated on at UK. The Raineys moved him to another hospital where he survived more surgery. Despite numerous questions, they were never told why the surgery program was halted.
"That explains nothing to parents or the public for that matter," Rainey said. "Once again, they're finding a way around the truth. How can you restore trust if you're not even doing what you said you would do? I don't trust them, and I don't think the full story of what happened is going to be told."
William Thro, UK's general counsel, said officials could not speak to what went wrong because of federal statutes on patient privacy — The Patient Safety and Quality Improvement Act and The Health Insurance Portability and Accountability Act. Thro also said that any public discussion of problems in the cardiac division could hinder the peer-review process.
"We fully understand that people want to know details," Thro said. "We fully understand and believe in transparency as much as possible."
But he said there are other values at stake, such as the importance of an effective peer-review system.
"We have to have a system in which an orderly or a scrub nurse have to feel perfectly safe to call out a doctor, to call out a senior nurse, to say 'this is wrong, I think we're doing something wrong,'" he said. "The peer review process is enormously important."
Arthur Caplan, director of the division of medical ethics at New York University's Langone Medical Center, said hospitals often try to hide behind federal laws, but as happened in the UK case, people are often willing to waive their HIPAA rights.
"They should be giving the public a sense of 'here's the main problems, here's the steps we've taken,'" Caplan said. "I do think there's an obligation to be transparent in a general way. Do hospitals do that? I've never seen them do that."
Average to exemplary
The saga at UK has been going on for almost a year.
A former WUKY reporter, Brenna Angel, filed a Kentucky Open Records Act request in December 2012 for mortality rates and other information about the program, which UK largely denied. Attorney General Jack Conway's office said UK had violated the state Open Records Act, but UK appealed the ruling in circuit court.
However, after CNN published a lengthy story on UK's cardiothoracic program, identifying at least two children who died, UK decided to release mortality rates for the program. Those rates were slightly above the national average, and saw a sharp uptick in 2012.
"Our program was a program that had reasonable results for our size, but I want a program that excels," UK HealthCare CEO Michael Karpf said Thursday.
Karpf declined to be more specific about why the surgeries were stopped.
"I wanted to go from an average program to an exemplary program, and the most prudent thing was to call a time-out," he said.
The task force report was scheduled for official release Friday, the same day UK was expected to be named a "Rising Star" by the University HealthSystem Consortium. UK's ranking among 118 academic medical centers went from 56th in 2012 to 12th this year.
"We are committed to a program that meets the standards of the Rising Star announcement," Karpf said.
Bernard Boulanger, UK's chief medical officer, chaired the review task force and said its goal was to recommend whether UK could and should create a pediatric cardiac program that met its own standards. The task force had 14 members and involved about 30 people — none from outside UK HealthCare.
"It's clear that we recognize we need to do things differently in order to be great," Boulanger said.
Karpf had worked with Plunkett at the UCLA medical center and hired him in 2007 as an endowed chair. According to Karpf, Plunkett built the pediatric cardiothoracic surgery program from scratch, doing complex surgeries that had never been done at UK.
The program's second act calls for the creation of a four-bed cardiac intensive care unit within the pediatric ICU at Kentucky Children's Hospital and to hire at least 13 new people, including a senior pediatric cardiac surgeon, four ICU doctors, four nurses for the new ICU, an anesthesiologist with pediatric cardiac training or experience, and an administrator.
The report also calls for UK to explore possible alliances with other organizations, such as Kosair Children's Hospital.
Boulanger said the investment would amount to several million dollars. Karpf will make the final decision about how to move forward.
The unit would start with simple surgeries and move forward as resources became available. It's also possible UK would decide not to do the most complicated surgeries, called Level 5, Karpf said.
Issues surrounding UK's pediatric cardiac program raise larger questions about UK HealthCare's rapid growth, said Kevin Kavanagh, a Somerset doctor who chairs Health Watch USA, a medical watchdog organization.
In the past decade, Karpf has expanded UK's medical center at a blistering pace, with plans for nearly a billion dollars in new construction in an attempt to create a one-stop regional center for the state and beyond. It's possible that the hospital began offering highly complicated surgeries before it had a support structure in place, Kavanagh said.
"If you expand too soon or in the wrong way, then you can become stressed," Kavanagh said.
Shannon and Miranda Russell's son, Jaxon, survived after what they describe as a "botched" heart surgery at UK, according to their nonprofit Lil' Heart Sluggers. He was later operated on successfully at Nationwide Children's Hospital in Columbus, Ohio.
"I think they messed up big time with not having an ICU dedicated to the heart babies," Shannon Russell said. "For the second go round, it sounds like they're on the right path. It sounds good that they're going in that direction in having all that speciality stuff, but it shows the lack of development they had in place before."
Jennifer Allen's baby, Kalyn, underwent three complicated surgeries at UK before doctors told the Allens to take their daughter to C.S. Mott Children's Hospital at the University of Michigan, the same hospital where Waylon Rainey was successfully treated. Kalyn had one surgery at Mott but died in Kentucky on Jan. 3, 2012, at the age of 2.
"I'm glad they're taking steps in the right direction, that's a good thing," Allen said of UK. "However, if they're still withholding information, then that indicates to me they know mistakes were made and they're trying to do everything they can to keep them covered up. If nothing else, we as parents should be given the courtesy of knowing what, if anything, went wrong."
Pediatric cardiothoracic surgical procedures
Surgeon Mark Plunkett performed hundreds of pediatric cardiothoracic surgeries at UK each year.
These are mortality rates for UK's pediatric cardiothoracic surgery patients as reported to the Society of Thoracic Surgeons. National mortality rates range from 4.0 percent to 5.3 percent, according to the National Institutes of Health.
2010 5.2 percent
2011 5.7 percent
2012 7.1 percent