Ascension Wisconsin patients navigate uncertainty, delays and faxes in cyberattack's wake
As national health system Ascension slogs through setbacks prompted by a May 8 cyberattack that crippled many of its systems, patients are forced to navigate a complex web of changes.
The system disruptions mean some Ascension Wisconsin patients waiting to find out if they have breast cancer or multiple sclerosis; doctors faxing orders for medical procedures to their patients' homes; patients confused about how to contact their doctor; radiologists giving patients computer disks with test results.
Since the cyberattack was detected, health care workers at Ascension facilities in Wisconsin and across the country have not been able to access the electronic medical records system, called Epic, critical for documenting patient histories and taking care of patients. Patients also do not have access to MyChart, the portal used to check lab and test results, communicate with doctors and schedule appointments.
Ascension doctors and other health care workers now use paper to write orders for procedures, make prescriptions and keep track of patients' conditions.
The system shutdowns have not been resolved and Ascension — which is one of the largest nonprofit health systems in the country — has given no timeline for them to be restored. In statements, Ascension says it will take "some time" before its hospitals, clinics and other facilities return to normal operations.
Ascension hospitals, clinics remain open
In public statements, Ascension says its hospitals, urgent cares, clinics and other sites are open and that patients can and should go to scheduled appointments. The company advises patients to call ahead of appointments and that if rescheduling is needed, they will be contacted. Patients are asked to bring notes of their symptoms, lists of current medications and their prescription bottles to appointments.
Ascension operates hospitals, clinics and other health care sites across 18 states. The health system has 17 hospitals and many other health care sites in Wisconsin.
The Milwaukee Journal Sentinel asked patients to share their experiences with Ascension since the cyberattack and received dozens of responses.
While some patients have had success navigating this new landscape, others have run into more difficulty getting the care that they need.
Some Ascension patients unable to reschedule appointments
Krista Sokolski, of Bristol, has not been able to reschedule a diagnostic mammogram after her May 8 appointment at Ascension All Saints Hospital in Racine was canceled as a result of the cyberattack, she said. Her OB-GYN ordered the procedure after finding a lump under her armpit.
Sokolski received a call nearly a week after the cancellation advising her to go elsewhere for the mammogram, she said. She had already waited two weeks for the May 8 appointment.
"It’s frustrating because something could be wrong, but you don’t know," she said. "You’re just in limbo."
She does not feel Ascension was as prepared for this kind of event as the health system's management is claiming.
"It’s been a week now, and I still haven’t had any service and they only just called back," she said in a Wednesday interview.
Ascension is working with cybersecurity experts to safely bring its systems back online. In a notice to bondholders, Ascension said it shut down some of its systems "as a precautionary measure" once the cyberattack was detected and that the systems would be "analyzed, sanitized and carefully monitored before being restored."
Ascension says its health care workers are trained in procedures for when systems are down.
"Our dedicated doctors, nurses and care teams are demonstrating incredible thoughtfulness and resilience as we utilize manual and paper-based systems during the ongoing disruption to normal systems," said a statement from Ascension. "We want to express a sincere thank you to our patients and community for your patience and support through this difficult time."
Patient waits to learn if she has multiple sclerosis
Kim Lagroone, of Racine, had an appointment scheduled on May 8 to discuss the results of multiple tests to determine if she has multiple sclerosis. But the appointment was canceled. She was told May 8 she would get a callback, but a week later, she has received no call.
More: What we know about the cyberattack on Ascension hospitals and clinics in Wisconsin, across the U.S.
The day before Ascension's systems went down, Lagroone saw enough of her results on MyChart to be "pretty certain" she has MS. But she has not been able to reschedule the appointment with her doctor at the Center for Neurological Disorders at Ascension St. Francis Hospital in Milwaukee. She is left to wait and wonder.
"It just freaks you out and now you can't talk to anybody," she said.
Lagroone acknowledges the difficulty of the situation, but says she is in a "terrifying" place. Everything she has read about MS has emphasized the importance of starting treatment early. She has resorted to watching online videos about MS to try to educate herself.
Lagroone is a full-time caregiver for one of her adult sons, who has physical and cognitive disabilities.
"What’s going to happen to me? Am I going to be able to take care of my son?" she said. "Mostly I'm afraid for him. I'm afraid what this means for us."
Other Ascension patients see success in getting care, with extra steps
Other patients have been able to get care, but only after going through a labyrinthine set of steps that take longer, aren't always obvious and often rely on doctors and other health care workers going the extra mile.
Evelyn Defatte-Singh, of Kaukauna, finally went to her doctor's office on Wednesday after her repeated phone calls over the prior week didn't go through. She was recovering from shingles but started experiencing new symptoms that were only getting worse, including extreme pain in her right arm, chest and head; trouble closing one eye; and difficulty moving her lips.
Her doctor at the Ascension clinic in Kaukauna recommended she go to urgent care or to the emergency room reportedly because the clinic didn't have a way of running labs or other tests, Defatte-Singh said.
She went to an Ascension urgent care in Appleton, where a health care provider physically examined her but did not run any tests or labs, she said. She was diagnosed with Bell's palsy, a condition that causes sudden weakness in the muscles on one side of the face. There is no specific test for Bell's palsy, though doctors may order tests to rule out other conditions, according to the Mayo Clinic.
Defatte-Singh was sent home with prescriptions for a steroid called prednisone, an antibiotic and eyedrops.
"The stress is phenomenal," she said. "I understand they’re doing the best they can, but still I'm very concerned with the added stress, and am I going to know what to do and where to go."
On top of everything, Defatte-Singh had to figure out how to get prescription refills for her husband, who is diabetic and recently had a pacemaker implanted. She had to make repeated trips to the doctor's office to provide information on her husband's medications and to help resolve confusion between the doctor's office and the pharmacy.
"This is exhausting me," she said. "I know it's no one's fault. It's just cumbersome."
Trying to get a MRI for a broken hip
Todd Switzer, of Thiensville, got an X-ray and a CT scan at Ascension Columbia St. Mary's Hospital in Mequon the day before the cyberattack for a broken hip. Thankfully, his doctor, part of Madison Medical Affiliates, a group affiliated with Ascension, took a look at the results before the systems went down the next day, and told Switzer he needed an MRI.
After the cyberattack, Switzer didn't hear back about scheduling the MRI and took it upon himself to call his doctor.
When his doctor wasn't able to fax a handwritten order for the MRI to the Ascension radiologists, the doctor faxed it to Switzer's home. Switzer then hand-delivered it to the radiology clinic. He waited for the clinic to manually get approval from his insurance before getting the MRI that day.
He left the appointment with a physical disk containing his MRI results, which he took to an appointment with his orthopedist. The orthopedist was able to read the results and tell Switzer he didn't require surgery.
Switzer praised his doctors for going "above and beyond," but also acknowledged not everyone has a fax machine at home or as good of a relationship with their doctor as him
"The doctors and everybody else, at least from my experience, have been outstanding with doing what they can with the limited resources that they have," he said. "They've been fabulous."
Ascension acknowledges that some patients may experience delays and longer wait times because of the slowdowns caused by the records system being down, along with other systems used to communicate across hospital departments and to page doctors.
Tracey Schwerdtfeger, a registered nurse at St. Francis Hospital in Milwaukee and an official with the union representing health care workers there, said the rate of patients leaving the emergency department without being seen has gone up since the cyberattack, likely because of longer wait times.
Some Ascension patients left in limbo without test results
Other Ascension patients who had lab work or scans done in the days immediately preceding the cyberattack or since say they are in limbo, waiting for results that neither they nor their health care provider can access. Some patients report checking MyChart daily or near daily for test results but either not being able to log in or not being able to see any results.
Elizabeth Franczyk, of Bay View, went to Ascension Columbia St. Mary's Hospital in Milwaukee on May 8 for an abdominal ultrasound. Her doctor had ordered the procedure after finding high levels of liver enzymes during routine bloodwork, a potential sign of liver damage.
Franczyk remembers the hospital being in a state of disarray when she arrived the day of the cyberattack. She had to tell the ultrasound tech exactly the kind of ultrasound she needed. She was not asked for her ID or insurance information. She wrote her name and date of birth on a piece of paper.
"I walked out of there like, 'What just happened?' " she said.
She hasn't heard anything about the results, and when she checked with her doctor's office, they didn't know anything about them either, she said. She feels "it will be a miracle" if the results ever get read and make it to her doctor.
"It's certainly disconcerting," she said. "It’s the first time I‘ve had this kind of weird health scare in my life."
When she went back for another appointment, this time for a mammogram, it was a "much more comfortable experience."
"It seemed like they had a handle on the situation," she said.
Still, she is unsure when she will get those results or how.
Patients and health workers alike reported being in the dark about how long the system disruptions might last.
With the outage in its second week, some patients report wanting more answers than simply "we don’t know" or "wait and see."
"I understand it’s got to be a really stressful situation, but it’s been a week (since the ultrasound) and I would just like to know something more concrete," Franczyk said.
Lagroone, the Racine woman waiting on a possible MS diagnosis, had similar feelings.
"I thought somebody would know something by now," she said. "I was trying to wait, ... but at some point you have to tell people more than, 'It could take some time.' "
This article originally appeared on Milwaukee Journal Sentinel: Ascension Wisconsin patients face uncertainty, delay after cyberattack
