Delores Fleming's relatives tried to keep her in her house as long as they could. But her Alzheimer's disease made that impossible.
Placed in a nursing home near Decatur, Ill., she scored 23 out of 30 on a mental exam and was deemed to be "moderately impaired," state inspection records show. Nurses found the grandmother to be pleasant and talkative.
But after she repeatedly had crying spells and tried to wander away, her doctor prescribed two antipsychotic drugs, even though she was not psychotic. The doctor doubled the dosage of one medication no fewer than four times, putting her above the recommended limit, the records state.
A neurologist, called in after Fleming's family complained, found that she was glassy-eyed and "catatonic," scoring zero on the mental test.
The neurologist urged that Fleming be weaned off the drugs. Once again, she became aware and responsive. "A new person," the neurologist told investigators.
State regulators cited the nursing home, Heritage Manor of Mount Zion, in November 2008 for the misuse of psychotropic drugs.
Yet in cases like these, the people primarily responsible for the patients' medication -- the doctors who prescribed the drugs -- typically emerge with no citations, no penalties and spotless public records, a Tribune investigation has found.
When the Tribune reviewed 40,000 state and federal inspection reports filed since 2001 on 742 Illinois nursing homes, numerous instances emerged in which regulators cited facilities for misusing psychotropics even though the patients' doctors had created the problems.
When physicians or psychiatrists prescribe a drug for a patient, facilities must administer it as long as the order is consistent with state and federal nursing home regulations. If inspectors determine a violation occurred, they cite the nursing facility, not the doctor.
"There's no downside for the physicians" who order inappropriate psychotropics, said Robert Hedges, a former regulator with the Illinois Department of Public Health who now co-owns five nursing facilities.
"Physicians aren't being fined," he said. "Physicians don't have any citations against them."
The Tribune found that inspectors documented many cases in which doctors prescribed powerful antipsychotic drugs without adequate justification or in doses that were too high.
The doctors also sometimes failed to provide adequate follow-up care, the inspection records show. They are required to see their nursing home patients only once every 60 days, though some do not visit even that often.
The difficult task of monitoring for side effects is left to nurses, some of whom, the records show, are poorly trained in the use of psychotropic drugs.
The Department of Public Health enforces nursing home regulations by issuing citations against facilities based on inspectors' visits. It cannot discipline doctors, though it can report alleged wrongdoing to the Illinois Department of Financial and Professional Regulation.
That agency can fine physicians and suspend or revoke their licenses, but its enforcement actions against dangerous doctors have been criticized in recent years as slow and weak. Problems identified in a 2006 Illinois auditor general's report include inadequate staffing, inconsistent disciplinary actions and excessive time prosecuting cases.
Agency spokeswoman Susan Hofer said it does not track how many nursing home doctors have been disciplined, and she could not immediately think of any.
Suddenly, a new doctorWhen families place a loved one in a nursing home, one of the first things they often must do is choose a new doctor. Many people's regular doctors do not make rounds in nursing homes, and the patients may be too frail to go to their offices.
Nursing homes supply families with a list of physicians who visit their facilities. Families might choose from the list knowing little about the doctors. Likewise, the doctors often take on medically complex patients they have never met.
Experts say the situation can affect quality of care, and the Tribune's review of inspection reports shows that is true -- sometimes with tragic consequences.
Take the case of the Fondulac Rehabilitation and Health Care Center in East Peoria, where in January a 74-year-old woman who was not psychotic was placed on the antipsychotic drug Risperdal, grew extremely weak and eventually died, records show.
According to inspection reports, a family member told investigators that when the patient was admitted to the home, she was assigned to a doctor who had never cared for her before.
The woman had no history of mental illness, but on her second day in the nursing home the doctor put her on Risperdal for " agitation," records show.
A family member complained to the nursing staff about her reaction to the medication and told inspectors she was difficult to awaken, couldn't hold her head up and was slobbering. But the doctor canceled a meeting to discuss the matter, the family member said.
On the woman's 20th day in the home, a nurse wrote in her notes that the woman was "lethargic, extremely limp, eyes rolled back in head," records state.
The family called the next morning to complain again about the drug, and the director of nursing pulled the woman's file. But 25 minutes later, the director called the family back with bad news: The woman had just died.
The state health department cited the nursing facility for failing to "medically justify" the administration of the drug, but Fondulac spokesman Greg Wilson said in an interview that the nursing home was not at fault.
"Nobody here at the facility makes any decisions on what medications that patients are on," Wilson said. "We follow the physician's orders."
Several nursing home owners interviewed by the Tribune said they have struggled with doctors who rarely make time to visit patients.
For instance, nursing home owner Stephen Miller said he fired one of his medical directors in 2007 for being "chronically inattentive" to patients, some of whom were taking psychotropic drugs. Miller owns 10 facilities in Illinois, several of which have been cited for violations involving psychotropics in the last eight years.
Miller said the medical director visited patients only after Miller threatened to call the department of professional regulation. Even then, he said, the director performed only a cursory check.
"He dashed through the orders, signing them without processing what they were," Miller said. "He flew through that, then blasted around the building and spent just minutes with each patient."
Nursing homes are required to have pharmacists visit the facilities regularly and review prescriptions. If they discover irregularities, such as a patient placed on a drug without cause, they notify the nursing staff and doctor.
But the Tribune found that when pharmacists recommended that a psychotropic be discontinued or the dosage reduced, physicians sometimes ignored the advice.
The inspection reports -- and the facilities' written responses to citations -- also show that doctors have disagreed with the inspectors, who usually are nurses. Many doctors argued that their patients do better on psychotropics than off. Others said families demanded the medications. Some said they were puzzled that inspectors would urge patients be taken off drugs that have eliminated unwanted symptoms.
When inspectors at a facility in central Illinois in March reported finding a woman on an antidepressant who showed no signs of depression, they cited the home for not trying to reduce her medicine. Contacted by the inspectors, the doctor pointed to his medical expertise.
"How do you assess her for depression? She doesn't talk," he said. "She has lots of things wrong with her and lots of reasons for being depressed. It is my clinical judgment, all of that would make anyone depressed. I will not go by pharmacist recommendations."
Once, happy-go-luckyDelores Fleming, who likes to be called "Dee," lived in the same two-story house in Decatur for 40 years, and for a decade she had the same doctor. But in early 2008, her Alzheimer's disease worsened. She would leave the stove on or try to shovel snow without shoes.
Her six children decided that their mother, then 76, would be safer in the nearby Heritage Manor nursing home.
Family members said officials at the facility encouraged them to choose its medical director, Dr. Hima Atluri, as Fleming's new doctor. Her family would come to blame Atluri -- more than the nursing home -- for what transpired there.
"I can't believe what she did to my mom," daughter Jill Lorentz said. "My mom used to be so happy-go-lucky."
Atluri declined to be interviewed for this article and did not respond to written questions.
Fleming had few problems her first week in the nursing home, according to her medical records, which her family provided to the Tribune. But several weeks later, when she repeatedly tried to leave the facility and became aggressive when redirected, Atluri doubled her dosage of the antipsychotic Seroquel, records show.
Her family had given consent for the Seroquel, but the medical records show the permission sheet erroneously described the drug as an anti-anxiety medication. Seroquel is an antipsychotic drug intended for serious mental illnesses, such as schizophrenia.
Daughter Sue Kinney said the family did not know the drug was an antipsychotic and didn't fully understand the risks.
"We're not doctors," she said. "We're not nurses."
Records show that Fleming briefly improved on the Seroquel, but over the next three months she had episodes of extreme anxiety. Once she thought she was possessed, nursing notes state. Another time she thought her brother had left her $50 million.
"She is walking all over nursing home telling them she is giving them thousands of dollars," a nurse wrote.
Her doctor ordered multiple injections of the antipsychotic drug Haldol and the anti-anxiety medication Ativan, state inspection records show. Fleming's dose of Seroquel also was repeatedly doubled, putting her above the recommended limit for that drug.
After Fleming's family complained that she had grown lethargic, the staff referred her to a neurologist. According to a state inspection report, the neurologist found her catatonic and believed she had developed tremorlike "Parkinson's symptoms, due to the Haldol."
When he gave her the same mental exam she had previously taken, she scored zero out of 30. The neurologist recommended that her drugs be curtailed, and her condition dramatically improved. When she retook the test, she scored a 30 out of 30.
But weeks later, back at the nursing home, Fleming continued to wander off. Both her family and the facility decided she should live elsewhere. The family wanted her in a home that specialized in Alzheimer's care; Heritage Manor believed Fleming was endangering other residents, records show, and gave her 30 days to leave.
In September 2008 the family moved her to a facility in nearby Monticello and filed a complaint with the state health department. After an investigation, the department cited Heritage Manor for failing to document the physician's rationale for giving an antipsychotic drug above the recommended limit.
The home denied wrongdoing. In a letter to regulators, it said Fleming had displayed "extreme excited states with delusional behavior -- behaviors that even family could not calm."
In fact, the home said, it had worked hard to protect Fleming. Despite her aggressive behavior, it noted, she never harmed herself by wandering away or falling. The home asked regulators to drop the violation, but they did not.
Family members also complained about Atluri to the state's professional regulation department, which would not comment when contacted by the Tribune. The agency's Web site shows no disciplinary action on the doctor's record.
"I think there's been no justice there," Lorentz said.
In April, Atluri left her position as medical director of Heritage Manor after 11 years, according to Heritage Enterprises, the facility's operator. Heritage Enterprises spokeswoman Melissa Beaver declined to say why Atluri left.
Fleming's children, meanwhile, have consulted a lawyer and said they are considering suing Atluri and the nursing home, saying her tremors have not gone away.
On Wednesdays, members of Fleming's family take her to Dairy Queen, where on a recent visit she shuffled into the restaurant and, with some coaching, ordered her favorite: a hamburger and vanilla shake.
She was alert but unable to be interviewed because of her medical condition. She showed no tremors, but her children said they come and go.
"We got her back," daughter Sandy Born said. "As far as can be expected."Copyright © 2015, CT Now