State clears doctors, parents protest
By Carol Gentry
9/25/2009 © Health News Florida
Two doctors who are being sued over the high-profile death of Boca Raton teen-ager Stephanie Kuleba will not have to worry about the Board of Medicine, confidential state documents show.
The West Boca High cheerleader died in March 2008 from an acute reaction to anesthesia given during routine surgery. The case became widely known when the parents appeared on national news shows to raise awareness about the condition that killed her, malignant hyperthermia.
Letters dated April 29 from the Department of Health say complaints against the surgeon and anesthesiologist were dismissed because there was “insufficient evidence” that the physicians violated standards of medical practice.
This came as a shock to the girl’s parents, Joanne and Tom Kuleba, because they say they knew nothing about a state inquiry being started, let alone concluded. They say the secrecy makes them suspect that the medical establishment is just protecting its own.
“How is this possible?” Tom Kuleba said. “They never even contacted us.”
The letters were addressed to Stephanie Kuleba, even though by then she had been dead for more than a year. Joanne Kuleba found that disturbing and “stupid.”
The DOH official who sent the letters, Assistant General Counsel Juanita Powell-Williams, wrote that she was advising Stephanie of the dismissals as the filer of the complaint.
But that was impossible, the Kulebas say, because Stephanie became critically ill during the procedure, breast implant surgery. Her heart rate sped up, muscles became stiff and body temperature spiked, causing organ failure. She went into cardiac arrest on her way to the hospital and had to be resuscitated, according to their lawsuit. She was dead in less than 24 hours.
An autopsy by the Palm Beach County Medical Examiner’s Office found that the 18-year-old, who had always been healthy and active, harbored a hidden genetic sensitivity to certain types of anesthesia.Her death was ruled an accident.
The Kulebas, who filed the malpractice suit this week in Palm Beach County Circuit Court, contended that surgeon Steven Schuster’s office surgery suite wasn’t properly equipped for an emergency, that he and anesthesiologist Peter Warheit were too slow to recognize what was happening and administered too little of the antidote, the drug dantrolene.
(Neither physician responded to telephone calls and e-mails from Health News Florida. An attorney sent an e-mail indicating that he ordered them not to.)
When the Kulebas read the letters addressed to Stephanie five months ago, they realized that state medical authorities had accepted the doctors’ view that Stephanie’s death was an unavoidable tragedy. Presumably, they based that decision on some documents or medical opinions.
But the Kulebas wondered: Which documents? Whose opinions? They became determined to find out.
The system works this way: DOH investigators look into complaints and then, if warranted, send them to the legal division for presentation to a committee that screens cases for the Board of Medicine.
That committee of members and former members of the board – usually two doctors and one “consumer member” -- determines whether there is “probable cause” that a violation of the medical practice act has occurred. The panel votes on whether to proceed with an administrative complaint against the doctor.
If the vote is yes, the administrative complaint becomes a public record 10 days after it is drawn up and filed. However, if the panel finds insufficient evidence to proceed, the records remain secret.
That’s what happened to the complaints brought against Drs. Schuster and Warheit.
The Kulebas kept running into brick walls. They couldn’t even find out who filed the complaint.
”You fall behind this black wall of secrecy,” Tom Kuleba says. “They literally will tell you nothing.”
The DOH letter to Stephanie had said that as the complainant in the case – which she wasn’t – she could seek a rehearing of the dismissals. Tom and Joanne Kuleba seized on that. They told DOH that as next of kin, they should be able to request a rehearing on her behalf.
They collected documents they felt were significant and bound them into notebooks they sent to Tallahassee.
The response from Powell-Williams was positive. She wrote that prosecutor Ephraim Livingston had “reviewed the information you submitted and we have concluded that it does warrant it (sic) to be presented back before the probable cause panel for them to consider.”
A date for rehearing was set for Aug. 28. But on July 22, the Kulebas were informed that the rehearing had been canceled.
DOH attorneys had been looking through the statutes, Powell-Williams wrote, and could find nothing that gives patients and their survivors legal standing in such cases. Only the doctors and the person who filed the complaint could intervene, she said.
The Kulebas wanted to talk to the person who filed the complaint, in the hope that he or she would submit the documents for them. But DOH wouldn’t tell them who filed the complaint, saying that was secret under the law. DOH hinted it was someone from within the agency itself, probably someone who had seen the publicity and flagged it.
Stunned, the Kulebas realized the law considered them outsiders. They had no more right to give or receive information about their daughter’s death than any other member of the public. In other words, no rights at all.
“The Department must follow the statutes…,” Powell-Williams wrote, citing the relevant sections of law. “Please forgive me…”
Now, the file is sealed. DOH’s press office says that since the panel did not find probable cause that the law was violated, DOH cannot even confirm there ever was an investigation.
Florida law extends the DOH public-records exemption to complaint investigations by the Department of Business and Professional Regulation, as well. They remain secret forever if the probable-cause panel dismisses them.
It’s different for government employees, according to the Commission on Open Government Reform. Complaints about them become public when the investigation is complete or no longer active, whatever the decision.
This inconsistency prompted the open-government commission, which filed its final report in January, to call on the Legislature to lift the exemption in DOH and DBPR cases.
“There is insufficient constitutional justification for providing a higher level of secrecy” for professional licensees, the report said.
As for the Kulebas, they have thrown themselves into raising awareness about the condition that killed their daughter (see their Web site, www.StephanieJudeKuleba.org.) And they want the Legislature to fix the law that shuts patients and families out of the DOH process, that keeps information secret even from those most affected.
“We are forever broken,” said Joanne Kuleba. “But to try to right a wrong and be shut down on a technicality….that’s ridiculous.”
And the lawsuit? That’s not about the money, Tom Kuleba insists. “This is about justice.”
--Carol Gentry, Editor, can be reached at 727-410-3266 or by e-mail.