December 20, 2012 -- Pancreatic cancer is often a deadly diagnosis. Statistics indicate that 25 percent of people live less than a year.
So when a CT scan revealed a malignant mass in her mother’s pancreas last June, Elizabeth Schneider and her sister were determined to do everything possible to keep their mother alive. What ensued turned into a contentious battle over quality of care with Kaiser Permanente, her mother’s insurance plan.
Major surgery was the best option, she’d been told – the Whipple procedure. It involves removing the head of the pancreas, the gall bladder, the common bile duct and part of the stomach, and is a very difficult operation but could prolong her mother’s life.
About the same time, one of her mother’s friends had received the same diagnosis, underwent the surgery and died shortly thereafter. That convinced Schneider her mother needed a second opinion. After researching the best pancreatic cancer centers in the country, she asked Kaiser to allow her mother to be seen at the University of Washington, which has an excellent track record for treating such patients.
But Kaiser turned down the request. Earlier, its new president and medical director, Dr. Jeffrey Weisz, had decided to cut down on the number of outside referrals in an effort to reduce costs.
Schneider wasn’t willing to take no for an answer. After helping her mother switch to ODS Health Plan, she made an appointment for her mother with a pancreatic vascular surgeon in Washington. Examining the CT scan done by Kaiser, he told her the recommended surgery was not a good fit and, instead suggested she undergo chemotherapy.
“The cancer had clearly spread into mom’s liver and her abdomen, and the surgeon couldn’t understand why the Kaiser surgeon hadn’t seen those spots,” Schneider heard him say. Her mother also had an infection from the plastic stent inserted into her bile duct to relieve the jaundice that had gone undiagnosed by Kaiser.
Now, seven months later, her mother’s cancer has stopped growing and been stabilized, her blood cancer markers have been cut in half and her white blood count is normal, according to her latest CT scan and blood work. And, she’s been having chemotherapy at Oregon Health & Science University.
Schneider’s asking Kaiser to acknowledge they made mistakes and reverse its decision not to allow outside referrals. “Their system is flawed,” she said. “I want an apology for the way that treated us. I don’t think they should be in business treating pancreatic cancer if don’t have the skills they claim they do. Kaiser says they’re as good as anyone else, but it’s just not true.” That stent never worked and Kaiser never did any follow-up to see if it was working.”
In response, David Northfield, media relations manager for Kaiser issued this statement: “Kaiser Permanente is unable to provide comment on the case due to HIPAA patient privacy laws. Patients who wish to raise issues with their Kaiser Permanente health care services have an avenue to do that through the Membership Services department."
Schneider said she’s telling her story so other people don’t end up in a similar predicament.
“I want people to put pressure on so that Kaiser does the right thing rather than being inclusive and trapping people; Kaiser says there as good as anyone else but it’s absolutely not true,” said Schneider. “I feel like we got out in time, and Kaiser didn’t harm our mom. We didn’t let them. But everyone’s not as tenacious as my sister and I. Had we not fought to leave Kaiser, my mom would be recovery from a botched Whipple procedure and unable to receive chemotherapy.”
Today her mother is doing “amazingly well” for her age and the stage of her cancer. “One doctor commented she appeared to be in her early 60's rather than the 75 that she is. They’ve ordered 22 more rounds of the chemo (Fulflorinox) and that could take her out another 11 months. She’s tolerating the chemo very well, has not been sick and has not lost her hair. She’s back to eating and starting a mall-walking routine.”
Now that Schneider’s had a chance to contrast the care given at OHSU and the University of Washington, she can barely believe the difference. “Their doctors aren’t part of a big corporate bureaucracy and they come across as professional and compassionate compared with Kaiser, which is sub-par,” she said.
After Kaiser turned down her request for a second opinion, Acumentra Health, the agency that does independent reviews on behalf of Medicare patients, also looked at the case, and reached the same conclusion. There was no need for her mother to been seen by another surgeon, Schneider was told. “I believe they just rubber-stamped Kaiser's decision,” she said.
Although Acumentra Health could not discuss the details of its findings because of HIPAA laws, its Medicare review manager, Denise Phillips, RN, CHC, defended its decision. The agency works with independent board-certified physicians who review the patient’s clinical records to determine if there are any quality of care concerns, and their findings are evidence-based, she said.
“We don’t want any conflict of interest; the physician that reviews the medical record addresses our questions on whether there are any quality of care concerns,” she said. “It’s a very fair process and if we find any potential concerns, we send them back to Kaiser and they have an opportunity respond to see if their care met the standards.”
Acumentra Health has served as Oregon's Medicare Quality Improvement Organization for nearly 30 years through a series of three-year contracts with the Centers for Medicare and Medicaid Services, according to its spokesman, Greg Martin, and has performed medical case reviews since the 1970s.
FOR MORE INFORMATION
To review the annual report of medical reviews performed by Acumentra Health, click here.
