PHOENIX – Caitlin Secrist can’t eat, can’t work, can barely go to school online and is in constant pain from a severe illness. Now, the 21-year-old college student could die because she can’t get copies of her own medical records.
The files are locked away in a repossessed electronic-records system while creditors of bankrupt Florence Hospital at Anthem and Gilbert Hospital bicker over who should pay for access to them.
More than 300 patients have requested medical records without success since the hospitals shut down in June 2018, court records showed. Secrist’s family has asked for hers repeatedly.
Former patients need the documents to deal with chronic conditions or pursue medical malpractice lawsuits. Prospective employers of nearly 200 doctors and hospital staffers looking for new work have been unable to check their employment histories.
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But Secrist’s case might be the most urgent.
The medical records are the only thing standing between her and a life-saving surgery by a top physician at Johns Hopkins Hospital. The doctor has refused to perform the operation without a complete understanding of her health history, she said.
Every week that goes by, the danger increases of another attack of acute pancreatitis that could cause her organs to shut down.
“Without those records, we can’t go forward. We can’t make me better,” said Secrist, who lives with her parents in Florence, Arizona. “Having my life, practically, in the hands of a judge and people I don’t even know, who don’t even know my situation, it’s upsetting.”
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Secrist and her primary care physician sent letters this week to Maricopa County Superior Court urging swift release of her records. Federal and state laws require medical facilities to send patients copies of their medical records within 60 days of a request.
“It’s really hard to watch your daughter go through (pain), knowing there is a surgery that can fix this and we can’t (do it) because we’re missing stupid medical records,” said her mother, Suzette Secrist. “There’s just one thing holding us back.”
A knot of attorneys with competing interests have tied up the case for nearly nine months, arguing over who bears financial responsibility for maintaining former patient files.
Even Judge Roger Brodman admitted shutting down the hospitals has been more complicated than he anticipated.
“A major problem has been the issue of patient records,” he wrote in December. “Everyone acknowledges that, as a matter of law and public policy, the patient records need to be preserved. … At multiple hearings, the Court has repeatedly sought proposals to resolve the document retention/patient record problem. … If the Court errs, it will do so in the public’s interest.”
‘I thought I was going to die’
The first time Caitlin Secrist had an attack of pancreatitis in 2017, the stabbing pain in her stomach was so intense she crawled to her mother on her hands and knees.
“It hit me like a truck,” Secrist said. “I thought I was going to die, it was so bad.”
Suzette and Bill Secrist rushed their daughter to the nearest emergency room at Florence Hospital.
They learned her pancreas, which helps the body digest food and regulate blood-sugar levels, was malfunctioning. The tube connecting her organ to the small intestine is so small that digestive juices reflux back into the pancreas every time Secrist eats. Her pancreas, in essence, is digesting itself.
Secrist no longer eats by mouth. A feeding tube attached to her belly pumps liquid nutrients straight to her intestines from a backpack she wears 24/7.
Nothing Secrist’s doctors tried has worked.
Multiple surgeries to widen the tube have failed. Removing her gallbladder didn’t help. Her daily medication bottles — including drugs for digestion, pain and nausea — overflow a large, plastic box.
Secrist has been hospitalized more than a dozen times, her mother said. Twice she has nearly died.
The fatality rate for patients with severe acute pancreatitis can be as high as 50 percent, according to a 2016 study.
“It’s just like a ticking time bomb,” Secrist said.
‘My life is on hold’
Before she was diagnosed, Secrist carried a full course load at Central Arizona College, went out with friends and worked full time at Safeway as a cashier. Now she stays at home. She only has enough energy to take one online class a semester, she said.
“I was able to do everything like a normal teenager. And suddenly, my life just stopped because of the pancreatitis,” Secrist said. “I feel like my life is on hold. It’s not going anywhere.”
It’s rare for a person as young as Secrist to get acute pancreatitis.
The illness typically afflicts the elderly or people who smoke, drink or take drugs excessively — which doesn’t apply to Secrist, her parents said. Preliminary testing suggests her condition is caused by genetic and congenital defects, they said.
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Once treatment after treatment failed, Secrist’s gastroenterologist in Phoenix made a tough decision. He recommended she seek a drastic surgery to remove her pancreas, spleen and appendix. The procedure would require three months of recovery and could render her diabetic.
It’s the first time in the physician’s 20-year career that he has referred a patient for a total pancreatectomy with autologous islet transplantation, Secrist’s parents said.
Few surgeons in the United States perform the operation. Although Mayo Clinic in Arizona can do it, Secrist’s insurance won’t cover the facility, her parents said.
So Secrist and her family flew to Baltimore in December to prepare for surgery at Johns Hopkins.
They brought as many medical records as they could. But Secrist was missing her first scans at Florence Hospital, despite requesting the files months earlier from a court-appointed receiver handling the hospitals’ affairs.
The Johns Hopkins surgeon told a crestfallen Secrist that he couldn’t operate without the full medical file. He needs to study the images to make sure the original diagnosis was correct and the proposed surgery is appropriate, her parents said. The doctor believes bowel disorders are often mistaken for pancreatitis.
No one wants Caitlin Secrist to go through a risky surgery only to find out it didn’t fix her, Suzette Secrist said.
The surgeon is “erring on the side of caution,” she said. “He’s not going to just jump in and start pulling out her parts.”
The fallout of hospital bankruptcy
Years of rocky finances at Florence and Gilbert hospitals preceded the medical-records dilemma affecting Secrist and hundreds of other Arizonans. The health centers had declared bankruptcy once before, in 2014.
As the medical facilities faced imminent closure last summer, the judge appointed a receiver, Resolute Commercial Services, to independently manage affairs.
Resolute rushed to find other hospitals to take patients; safely dispose of radioactive medical equipment, narcotics and hazardous waste; collect final payments from insurers; handle patients’ medical records; and tie up other loose ends, court documents showed.
Florence and Gilbert hospitals owed many companies, but the largest debt was more than $13 million in loans to New York investment company Indigo-DLI Holdings.
Other creditors included Medhost, which maintained the hospitals’ electronic health records, and Somerset Capital Group, which provided computer servers to host records.
It didn’t take long for Resolute, Indigo, Medhost and Somerset to begin quarreling over getting paid.
All parties expressed sympathy for patients in interviews with The Arizona Republic — except Indigo.
When asked whether the lender planned to do anything to help Secrist obtain records to undergo vital surgery, an attorney for Indigo repeatedly said he would not discuss ongoing litigation.
“My client does not object to any patient obtaining a copy of his/her records at the patient’s expense,” Indigo attorney Kyle Hirsch later said in a written statement. “My client does object to being forced to pay the cost of patient record fulfillment.”
Waiting for the judge
Even if Secrist wanted to pay for her medical records, she couldn’t, said Bradley Cosman, an attorney for Resolute.
It is too technically difficult to reactivate the entire electronic-records system to respond to an individual request, he said.
“The Receiver empathizes with former patients and has been working since his appointment to preserve and protect medical records,” Cosman said in an email. “Unfortunately, circumstances outside the Receiver’s control — including the estate’s lack of funding, unilateral actions taken by creditors, technological challenges associated with migrating electronically-stored medical records, and other factors — have significantly complicated and delayed the issue.”
In January, Resolute finally brokered a compromise with Medhost. But the money would come out of Indigo’s proceeds. The lender tried to block it in court.
The plan now awaits the judge’s decision.
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Under the proposal, the court would authorize paying Medhost $45,000 to reopen the electronic health files for 90 days. Resolute would spend an additional $47,000 to hire a PR firm to alert patients to the limited window for requests and hire staffers to respond.
Medhost has gone to extreme lengths to help the parties comply with medical record requests, Medhost attorney Bryan MacKenzie said.
“We provided Gilbert and Florence with access to our software and systems … more than six months after termination (of their contract) and more than two months after the receiver was appointed,” MacKenzie emailed. “Since then, we have continued to work with the facilities, and have agreed on a plan with the receiver that would allow the facilities to access the necessary records. Unfortunately, in an apparent effort to protect their own financial interests, the senior creditor is standing in the way of this plan, forcing us to wait for the receivership court to work through their opposition.”
Somerset lawyer Larry Hirsch said he feels bad for patients who are waiting and hopes the proposed deal goes through.
“Everybody truly wants to come up with a system to get the patients their records,” he said in an interview.
A chance to plead her case
Secrist hopes to ask the judge for help in person Wednesday at a hearing on the proposal to end the impasse.
She wants to share why the medical records amount to more than pieces of paper. They are potentially her ticket to a more normal life.
Secrist promises the opportunity would not be wasted. She is taking pre-med courses to become a nurse.
“I want to pay back for all those nurses that made me happy when I was in the hospital,” Secrist said. “I want to make that kid feel special in the ER.”
She hopes the parties in court will listen.
“I wish they would just look into my case, and do what’s best for me, and do what’s best for all the other people who need their records,” Secrist said. “That way I can get them to my doctor, and I can get the help I need.
“As soon as possible would be great.”
Follow Rebekah L. Sanders on Twitter: @RebekahLSanders