Complaints about long-term care in Illinois are usually dismissed. One woman’s case sheds light on how the system works

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Complaints about long-term care in Illinois are usually dismissed. One woman’s case sheds light on how the system works
© John J. Kim/Chicago Tribune/TNS A person walks past Symphony of Evanston nursing home on Tuesday, Oct. 26, 2021, in Evanston, Illinois.

CHICAGO — One morning in March 2021, at a nursing home in Evanston, resident Velta Saint registered an alarmingly low 44% oxygen level in her blood. Normal levels range from 95% to 100%, and one study recommends hospitalization for any patient with a reading below 90%.

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Medical workers tried to improve Saint’s respiration, then sent her to a hospital — which sent her back to the nursing home, before she was returned to the hospital, where she died. Saint’s ordeal came after her daughter, a registered nurse, said the home had been slow, in her opinion, to diagnose her condition and failed to treat it aggressively. The daughter, Marlene Bryan, filed a complaint over her mother’s treatment with the Illinois Department of Public Health.

“What gets me is, I told them,” Bryan said. “There were so many things that are so wrong. If somebody had said, ‘This is not right,’ my mom would still be alive today.”

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But a state inspector found the complaint unsubstantiated, meaning he found insufficient evidence to give it credence. As a result, state regulators took no action against the nursing home — a common occurrence with complaints about long-term care.

In 2021, state inspectors found about 64% — nearly 2 out of 3 — of overall complaints and abuse or neglect complaints unsubstantiated. In 2020, 66% of overall complaints were unsubstantiated, and 90% of neglect allegations.

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The issue isn’t new nationally. As far back as 2009, the U.S. Government Accountability Office reported that concerns had been raised about the timeliness and adequacy of complaint investigations and federal oversight. GAO found 19% of investigated complaints nationally were substantiated and led to a citation, and that many state agencies had difficulty meeting performance standards for handling complaints.

Illinois had the second-highest rate of complaints and number of substantiated complaints compared with peer states, according to a consultant’s report that generally found lax state oversight and poor quality of care. Still, the dismissal of most cases has come as residents and loved ones have increasingly complained about conditions in nursing homes. Complaints rose 29% from 2014 to 2019, the report found, and last year, the state failed to investigate the most serious complaints for three months.

The state is required by law to conduct general inspections annually and to respond quickly to specific complaints. One of the prime drivers of complaints, officials say, is a shortage of nursing home workers, which has only grown more severe during the COVID-19 pandemic. To make matters worse, the state has been chronically short of inspectors.

In response to the Chicago Tribune’s questions, spokeswoman Melaney Arnold said the health department is not able to comment about individual cases, and she did not address questions about whether the number of complaints that are substantiated is low. But she said the agency has overhauled its Office of Health Care Regulation, hiring a new management team and 40 new nurse surveyors and five supervisors since September 2020 to eliminate a backlog of complaints.

The health department also hired a manager to coordinate the use of proceeds from fines to improve the quality of care at nursing homes, and the state is proposing major changes to tie funding to staffing and performance.

For their part, nursing home industry officials defended their performance, saying regulatory inspections often unnecessarily result in citations and fines, when working together would produce better results.

A rare look inside the complaint process

Saint lived at Symphony Evanston Healthcare, which Medicare rates at four out of five stars overall, based on health inspections, staffing and quality of resident care. It had 13 complaints that resulted in fines in the past three years, federal records show.

Responding to the Tribune’s questions about the case, Symphony issued a statement noting that after an inspection and an administrative review, state inspectors did not find any deficiency in the treatment the home provided.

“Patient privacy laws limit what we can share on the care provided,” the statement read, “but we do want to express our heartfelt condolences to (Ms. Bryan) and her family for their loss.”

Because Bryan was willing to share the state inspection report with medical records of her mother’s experience, the case offers a rare glimpse inside proceedings that typically remain secret due to health privacy laws.

Velta Saint was born in Jamaica and immigrated to the United States as a teenager, according to her daughter. She herself worked as a certified nursing assistant at nursing homes for about 20 years and cared a great deal for her patients, Bryan said.

She married and divorced, and as a single mother raised three children in Evanston. Bryan fondly recalled her mother taking her kids to fly kites and buy caramel apples at the nearby Affy Tapple store, and always emphasizing the importance of education.

Years ago, Saint suffered a stroke that partially paralyzed her left side. Bryan said she took care of her at home starting in 2007, preparing meals, getting her medicine, and testing her blood sugar due to her diabetes. But her mother’s health declined. She went from using a cane to needing a walker, and one day she fell down the stairs in her home. Eventually, she could not be left alone, and in 2019, she moved into Symphony nursing home.

Bryan said she visited her mother several times a week, bringing her favorite foods, including Jamaican beef patties. When COVID-19 became widespread by March 2020, visitors were prohibited. Bryan could only see her mother on video calls.

On Feb. 19, 2021, on a FaceTime call, Bryan said, she noticed her mother’s face appeared swollen. She sounded congested and was having trouble breathing, and said she was not feeling well. Bryan said she made repeated calls to the director of nursing, and left messages explaining that something was wrong with her mother and she needed diagnostic testing, according to Bryan’s complaint.

Later that day, according to the complaint, officials at the home called back to say an X-ray showed that Bryan’s mother had pneumonia, an infection that causes fluid to build up in the lungs. Bryan said that in her opinion, the medical professionals at the home should have noticed her mother’s condition and found the pneumonia before she alerted them.

At age 64, Saint had numerous underlying conditions, including heart failure, being overweight, high blood pressure and chronic obstructive pulmonary disease.

Patients with comorbidities who acquire pneumonia in a health care facility such as a nursing home, where the infection might be resistant to treatment, generally should be treated aggressively with intravenous antibiotics to attack any drug-resistant bacteria, according to recommendations from the American Thoracic Society. Medical records show Saint instead was given an oral antibiotic Augmentin for a week.

Nursing home records collected in the state inspection show repeated detailed updates about Saint for March 2, 3, 4 and 5, but appeared to show only vital signs for March 6, the day immediately preceding her being hospitalized.

The records indicated no major complications until before dawn March 7, when Saint suddenly was measured with a dangerously low 44% blood oxygen level after being on a continuous positive airway pressure machine, or CPAP, which is supposed to blow air into a patient’s airway to prevent sleep apnea.

Saint’s medical record from the home states, “Incoming nurse on duty went immediately to assess resident. Resident was alert and oriented … but very tired and weak. Resident reinstructed to keep her CPAP on. Nurse on duty observed that resident was noncompliant on keeping CPAP on. Resident’s voice sound was moist and audible sound as she were drowning in her own secretion.”

Bryan said she believes this should have been considered a medical emergency that required an immediate call for an ambulance.

Instead, according to the complaint, the nurse on duty told Saint to take deep breaths with a measuring device called a spirometer, and got her oxygen level up to 72% — still far too low. She was given Tylenol for her fever, and coughed up thick white mucous. She was put on portable oxygen, and 30 minutes later her blood oxygen was at 70%, nursing home records indicate.

About 2:30 that morning, records show, Saint was taken to Evanston Hospital with shortness of breath, cough and fever.

“At present, patient denies any complaint,” hospital records stated. “At the time her symptoms seemed attributable to HFpEF,” the record stated, referring to a form of ongoing heart failure. A chest X-ray found congestion and fluid in her lung, but there appeared to be no mention in the records of diagnosing or treating her pneumonia on that initial visit to the hospital.

According to the complaint, Saint was given Lasix, a diuretic, to help eliminate some of the excess fluid in her body, which she’d also been prescribed at the nursing home, and required help breathing with a bi-level positive airway pressure machine, or BiPAP. She tested negative for COVID-19, but told doctors she’d had shortness of breath and a cough for a week.

Saint was given several medications, measured oxygen levels above 90%, and was discharged back to Symphony of Evanston. There, she was seen by a doctor, who had her taken back to the hospital that night for admission and treatment of pneumonia.

The second time at the hospital, she was diagnosed with acute respiratory failure, exacerbation of chronic obstructive pulmonary disease or COPD, and pneumonia, records show. She was treated in the emergency department with IV antibiotics and steroids and a nebulizer to deliver medication to her lungs. She was first admitted to a room, and later put in intensive care on a BiPAP.

But, according to the complaint, she continued to decline the next day, with diminished breathing and increasing levels of carbon dioxide in her blood.

At 6 a.m. the following day, hospital records show, she was found unable to answer, with coarse breathing sounds and crackles. The family was called to her bedside, and requested a morphine drip. A priest from her parish was called to administer last rites. Saint had a do-not-resuscitate order. Her breathing apparatus was removed, and records indicate she “passed away peacefully.”

Bryan said she believes Evanston Hospital also failed her mother by initially sending her home without resolving her pneumonia. “So many people dropped the ball,” she said she believes. NorthShore University HealthSystem, which includes Evanston Hospital, declined to comment, citing privacy regulations.

In response to Bryan’s complaint about her mother’s care, the Department of Public Health sent inspector Rick Ramos, a health facility surveillance nurse and a licensed nursing home administrator, to the home March 17. He interviewed the nursing home administrator and director of nursing.

“Records show the facility put (Saint) on BiPAP machine to manage her COPD and respiratory needs and was assessed by staff throughout her stay,” his report stated. Nursing home officials were interviewed “with no concerns related to improper nursing care.

“Based on observation, interview and record review, the allegation of improper nursing cannot be substantiated,” Ramos wrote. “No deficiency cited.”

Following Department of Public Health rules, “A complaint is considered ‘invalid’ if the Department determines that there is no credible evidence that there has been a deficiency.”

In order to cite a violation, health department spokeswoman Arnold said, there must be evidence that a facility’s policies were not followed or didn’t meet regulations, or that a doctor’s orders were not followed. If anyone questions a physician’s orders, they can make a complaint against that physician.

Saint’s daughter disputed the findings, saying she believed her mother was not properly assessed, as indicated by the fact Bryan had to ask for an X-ray that found her pneumonia.

Bryan is appealing the findings of the inspection.

As a nurse, Bryan she said was able to understand the medical issues involved, navigate the system and file a detailed report challenging the inspection. The average person without medical training, she said, would never get that far through the daunting and emotional process.

Noting a Tribune report that Black and brown nursing home residents in Illinois died at a higher rate than whites, Bryan said in her view her mother’s case is an example of why Black people are skeptical of their medical care. “How would her treatment have been if she was white?” she asked.

As complaints mount, regulating roughly 1,200 nursing homes in Illinois is a gargantuan task. Each year, health department inspectors conduct about 10,000 surveys, including annual licensing inspections and complaints, which can be reported by phone at 800-252-4343.

In 2020, 161 cases were cited for putting residents in “immediate jeopardy,” and 329 plans of correction were imposed. Both numbers mark large increases from 2019, which state officials attributed to inspections for COVID-19 infection control.

More feedback is sought

Pat Merryweather, executive director for Project Patient Care, which advocates for patients, reviewed Saint’s treatment for the Tribune and said there were many unknowns in the case.

In general, Merryweather advocated for nursing homes to use rapid response teams, as do many hospitals, a tactic advocated by the World Health Organization. When a resident’s condition seriously worsens, the team is activated to keep the patient from crashing.

In case a physician isn’t immediately available in person, Merryweather suggested, nursing homes should be able to reach one quickly through a telehealth consultation.

“We need to move away from a wait-and-see mode,” she said, “to contacting a health care provider that can assess and if necessary, prescribe treatment and (an) intervention plan.”

In response to Tribune questions, Matt Pickering, executive director of the Health Care Council of Illinois, which represents more than 300 skilled nursing facilities in the state, said they have experienced strict regulation.

“IDPH surveys and citations have actually increased in frequency and severity,” he said. “From what we can tell, this is one anecdotal example being used to highlight a trend that our members simply aren’t experiencing.”

Instead, Pickering said, the state is increasing citations and fines, without providing substantive feedback for how to improve, as was found in a recent taxpayer-funded report.

“We would welcome the opportunity to partner with the department,” Pickering said, “to identify ways we can better work together to ensure quality care in a collaborative manner.”

Dr. Michael Wasserman, a former nursing home administrator and past president of the California Association of Long Term Care Medicine, said the inspection process needs to be reworked.

“The system is not effective and also hasn’t lent itself to bringing about significant improvements in quality of care,” he said.

Rather than pressuring nursing home workers, whom he called “incredible people,” he said the system should ensure the public funding that goes into nursing homes ends up improving patient care.

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