Fight Over Medical RecordsBy Kim S. Nash Print
The information management problems that beset Kaiser Permanente's kidney transplant program.
Patients vs. Kaiser: Get a Transplant Before It's Too Late
Bernard Burks' luck ran out in 2004. His kidneys, which had been temporarily knocked out in 2001 by treatments for the hepatitis he'd acquired as a young man, failed again. He was back on dialysis.
By the time Burks made his unannounced visit to Kaiser's transplant center in 2006, to sit, unbudging, in front of the receptionist, he says he had been battling Kaiser almost from the first day he was sent there from UC-Davis in January 2005. The year had been full of frustrations, according to his lawsuit filed last June in state Superior Court in Sacramento. Kaiser denies Burks' charges. But the experiences he relates in the suit and in interviews mirror many of the problems state and federal regulators would later find.
In addition to losing his records and his time on the transplant waiting list, Burks' lawsuit says, Kaiser lost track of his daughter, Leatha Sims, after she volunteered to give him a kidney. In February 2005, he got a letter from Kaiser asking if he knew anyone who would donate a kidney, even though Kaiser had already assigned a transplant coordinator to Leatha. Upset, he complained to transplant director Inokuchi. "If I ran my business in the same manner, I would have been out of business years ago," says the letter, dated March 8, 2005, in his court file. Burks' lawyer, Michael Bidart, who leads the HMO litigation practice for Shernoff, Bidart & Darras in Claremont, Calif., says he doesn't yet know the cause of Burks' problems with Kaiser. But, he says, the Kaiser kidney transplant cases are "as bad as anything I've seen." Kaiser attorney Lamb did not return a call seeking comment.
Setbacks continued for Burks. He thought he had a transplant date in July 2005, but the month came and went, and in October of that year, he got a letter from Sherman, his transplant coordinator, informing him of several obstacles to surgery. Some were disputes with Kaiser about his treatment, but one chronic lung disease he claims he never had. Furious, he fired off a reply, this time copying Inokuchi; his congresswoman, Doris Matsui; and Sen. Barbara Boxer.
"If you are so busy, Mary-Pat Sherman, hire some help!" says the letter in his court file. "You have lives on the line!"
That second letter produced a small flurry of activity. Pending more tests, he says, he was promised a transplant date in January or February 2006. But those dates also passed with no surgery. And even though Kaiser at some point did find the records of his transfer from UC-Davis, he says, Leatha couldn't get her calls to Kaiser returned, either. By now, she had moved to Texas but continued to be tested for surgery.
Meanwhile, Burks was spending three afternoons a week in dialysis getting a machine to clean his blood because his kidneys couldn't, a process that he says left him feeling "like a limp piece of spaghetti." His lawsuit, which charges negligence, asks for unspecified punitive damages for physical injury and severe emotional distress. "Your body's always racing, trying to replace those nutrients [that, along with the waste the machine sucks out of you," he says. "I think this is what kills you."
Every so often a patient at his clinic, often a friend, would die waiting for a kidney. "All of us are hoping to get a kidney; most of us will not due to our health conditions and the shortage of kidney donors," he wrote about his dialysis experience to Inokuchi on May 1, 2006, 12 days before Kaiser shut down the transplant center. "It's the dead pool, a group of people that meet three times a week and befriend each other, and about every 60 to 90 days one of them dies."
Kaiser is fighting to move Burks' lawsuit to arbitration, but the first ruling favored Burks. In October, a Superior Court judge in Sacramento ruled that when Burks joined Kaiser, he unfairly signed away his Constitutional right to a trial by jury because the arbitration notice Kaiser gave him as a new member was in unobtrusive 7-point type at the bottom of his enrollment form without italics, highlighting or bolding. The notice violated a "prominence" standard of the California Health and Safety Code, the judge ruled. Kaiser has appealed.
Four days before Kaiser's shutdown announcement, Burks was summoned to San Francisco by Kaiser surgeon Dr. Craig Lubbock, who offered to set up a surgery for him within the month, according to his lawsuit. Burks refused. "After what happened,
I didn't want Kaiser operating on me or my daughter," he says.
Now he's a patient at Stanford University Medical Center. But in September, once again his luck ran out. Three days before his transplant was supposed to take place, he says, tests on his daughter revealed high blood sugar, and his doctor said she could no longer donate.
Like 71,311 other people in the U.S., Burks now waits for a cadaver kidney. Stanford called UNOS and got his prior wait time restored, he says, which will put him higher on the waiting list. But his health is uncertain. Concerned about how well his kidneys are working, his doctor may lengthen Burks' dialysis sessions from 3 to 3 1/2 hours, three days a week, if his test results continue to decline.
Burks hopes to live long enough to see his lawsuit through, and win. Fingering the brim of a cap that reads "Panama Canal," he says he'd like to buy a motor home and travel. "Money never helped a dead man," he says.
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