The handwritten doctor’s order was just eight words long, but it solved a problem for Dundee Manor, a nursing home in rural South Carolina struggling to handle a new resident with severe dementia.
David Blakeney, 63, was restless and agitated. The home’s doctor wanted him on an antipsychotic medication called Haldol, a powerful sedative.
“Add Dx of schizophrenia for use of Haldol,” read the doctor’s order, using the medical shorthand for “diagnosis.”
But there was no evidence that Blakeney actually had schizophrenia.
Antipsychotic drugs — which for decades have faced criticism as “chemical straitjackets” — are dangerous for older people with dementia, nearly doubling their chance of death from heart problems, infections, falls and other ailments. But understaffed nursing homes have often used the sedatives so they do not have to hire more staff to handle residents.
The risks to patients treated with antipsychotics are so high that nursing homes must report to the government how many of their residents are on these potent medications. But there is an important caveat: The government does not publicly divulge the use of antipsychotics given to residents with schizophrenia or two other conditions.
With the doctor’s new diagnosis, Blakeney’s antipsychotic prescription disappeared from Dundee Manor’s public record.
Eight months following his admission with a long list of ailments — and after round-the-clock sedation, devastating weight loss, pneumonia and severe bedsores that required one of his feet to be amputated — Blakeney was dead.
A New York Times investigation found a similar pattern of questionable diagnoses nationwide. The result: The government and the industry are obscuring the true rate of antipsychotic drug use on vulnerable residents.
The share of residents with a schizophrenia diagnosis has soared 70% since 2012, according to an analysis of Medicare data. That was the year the federal government, concerned with the overuse of antipsychotic drugs, began publicly disclosing such prescriptions by individual nursing homes.
Today, 1 in 9 residents has received a schizophrenia diagnosis. In the general population, the disorder, which has strong genetic roots, afflicts roughly 1 in 150 people. Schizophrenia, which often causes delusions, hallucinations and dampened emotions, is almost always diagnosed before the age of 40.
“People don’t just wake up with schizophrenia when they are elderly,” said Dr. Michael Wasserman, a geriatrician and former nursing home executive. “It’s used to skirt the rules.”
Some portion of the rise in schizophrenia diagnoses reflects the fact that nursing homes, like prisons, have become a refuge of last resort for people with the disorder. But unfounded diagnoses are also driving the increase. In May, a report by a federal oversight agency said nearly one-third of long-term nursing home residents with schizophrenia diagnoses in 2018 had no Medicare record of being treated for the condition.
For nursing homes, money is on the line. High rates of antipsychotic drug use can hurt a home’s public image and the star rating it gets from the government. Medicare designed the ratings system to help patients and their families evaluate facilities using objective data; a low rating can have major financial consequences. Many facilities have found ways to hide serious problems — like inadequate staffing — from government audits and inspectors.
One result of the inaccurate diagnoses is that the government is understating how many of the country’s 1.1 million nursing home residents are on antipsychotic medications. According to Medicare’s webpage that tracks the effort to reduce the use of antipsychotics, fewer than 15% of nursing home residents are on such medications. But that figure excludes patients with schizophrenia diagnoses.
To determine the full number of residents being drugged nationally and at specific homes, the Times obtained unfiltered data that was posted on another, little-known Medicare webpage, as well as facility-by-facility data that a patient advocacy group got from Medicare via an open records request. The figures showed that at least 21% of nursing home residents — about 225,000 people — are on antipsychotics.
Medicare and industry groups said they had made real progress toward reducing antipsychotic use in nursing homes, pointing to a significant drop since 2012 in the share of residents on the drugs. But when residents with diagnoses like schizophrenia are included, the decline is less than half what the government and industry claim. And when the pandemic hit in 2020, the trend reversed, and antipsychotic drug use increased.
A Doubled Risk of Death
For decades, nursing homes have been using drugs to control dementia patients. For nearly as long, there have been calls for reform. In 1987, President Ronald Reagan signed a law banning the use of drugs that serve the interest of the nursing home or its staff, not the patient.
But the practice persisted. In the early 2000s, studies found that antipsychotic drugs like Seroquel, Zyprexa and Abilify made older people drowsy and more likely to fall. The drugs were also linked to heart problems in people with dementia. More than a dozen clinical trials concluded that the drugs nearly doubled the risk of death for older dementia patients.
In 2005, the Food and Drug Administration required manufacturers to put a label on the drugs warning that they increased the risk of death for patients with dementia.
Seven years later, with antipsychotics still widely used, nursing homes were required to report to Medicare how many residents were getting the drugs. That data becomes part of a facility’s “quality of resident care” score that contributes to a home’s star rating.
The only catch: Antipsychotic prescriptions for residents with any of three uncommon conditions — schizophrenia, Tourette syndrome and Huntington’s disease — would not be included in a facility’s public tally. The theory was that since the drugs were approved to treat patients with those conditions, nursing homes should not be penalized.
The loophole was opened. Since 2012, the share of residents classified as having schizophrenia has gone up to 11% from less than 7%, records show. The diagnoses rose even as nursing homes reported a decline in behaviors associated with the disorder. The number of residents experiencing delusions, for example, fell to 4% from 6%.
Caring for dementia patients is time- and labor-intensive. Workers need to be trained to handle challenging behaviors like wandering and aggression. But many nursing homes are chronically understaffed.
Studies have found that the worse a home’s staffing situation, the greater its use of antipsychotic drugs. That suggests that some homes are using the powerful drugs to subdue patients and avoid having to hire extra staff. (Homes with staffing shortages are also the most likely to understate the number of residents on antipsychotics, according to the Times’ analysis.)
The pandemic has battered the industry. Nursing home employment is down more than 200,000 since early last year. As staffing dropped, the use of antipsychotics rose.
‘Hold His Haldol’
Blakeney’s wife of four decades and one of his adult daughters said in interviews that he had never exhibited any mental health problems. Then he developed dementia, and his behavior became difficult to manage. His wife, Yvonne Blakeney, found that she could no longer care for him.
Over the next several months, Blakeney was in and out of medical facilities, where he was treated for problems including a urinary tract infection. He became increasingly confused and upset.
In April 2016, he went to the Lancaster Convalescent Center, a nursing home in Lancaster, South Carolina, where a doctor labeled him with schizophrenia on a form that authorized the use of antipsychotic drugs. That diagnosis, however, did not appear on his subsequent hospital records.
Six months later, Blakeney arrived at Dundee Manor, a 110-bed home in Bennettsville, South Carolina. When Blakeney was admitted, schizophrenia did not appear in his long list of ailments, which included advanced dementia, according to medical records disclosed in a lawsuit that his widow later filed against the home.
Two weeks after his arrival, Dundee Manor’s medical director, Dr. Stephen Smith, instructed the home to add the schizophrenia diagnosis so that Blakeney could continue to receive Haldol. He was also prescribed Zyprexa as well as the sleeping pill Ambien and trazodone, which is often given to help patients sleep.
Blakeney, who had worked for decades as a farmhand, was once tall and muscular. But the drugs left him confined to his bed or wheelchair, exhausted. When his wife and sister visited, they could not wake him. Over eight months, his weight dropped from 205 to 128 pounds.
Blakeney’s medical records show that several people warned that he was too sedated and receiving too many drugs.
Three weeks after he arrived at Dundee Manor, a physical therapist noted his extreme lethargy. In mid-November, after Blakeney lost 12 pounds in a single week, a dietitian left a note for the doctor. “Consider medication adjustment,” she wrote, adding that he was “sleeping all day and through meals.”
That month, an outside pharmacist filled out a form recommending that Blakeney’s doses of Haldol and Zyprexa be reduced to comply with federal guidelines.
On a form with Smith’s name and signature, a box labeled “disagree” was checked. “Staff feels need” for the continued doses, the form noted.
It was exactly the sort of decision — prescribing powerful drugs to help the nursing home and its staff, not the patient — that the 1987 law was supposed to ban.
Dundee Manor did not respond to requests for comment.
Yvonne Blakeney said that only after hiring a lawyer to sue Dundee Manor for her husband’s death did she learn he had been on Haldol and other powerful drugs. (Dundee Manor has denied her claims in court filings.)
In his first few months at Dundee Manor, David Blakeney was in and out of the hospital. During one hospital visit in December, a doctor noted that Blakeney was unable to communicate and could no longer walk.
“Hold the patient’s Ambien, trazodone and Zyprexa because of his mental status changes,” the doctor wrote. “Hold his Haldol.”
Blakeney continued to be prescribed the drugs after he returned to Dundee Manor. By April 2017, the bedsore on his right heel required the foot to be amputated.
In June, after weeks of fruitless searching for another nursing home, Yvonne Blakeney found one and transferred him there. Later that month, he died.
“I tried to get him out. I tried and tried and tried,” his wife said. “But when I did get him out, it was too late.”
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