NEW YORK — George LaRocca Jr. and his dad ran a Brooklyn auto shop together. Even when Alzheimer’s robbed the elder LaRocca of his memories and ability to work, his son brought him to work. But one day his dad wandered off and the younger LaRocca found him near some scrap yards. When LaRocca rolled up in his car, George Sr. said with a laugh, "I don't know your name but I know you belong to me."
LaRocca knew his dad needed more care than he or his mother could provide. So they made the difficult decision to admit him to Regeis Care Center, a nursing home in the Bronx with manicured lawns. Their motto: “The Road Back Home Begins with Regeis.”
{sidebar id=8 align=right}
Within a week at Regeis, his son says, his dad could no longer walk. Less than a year after being admitted on May 15, 2007, LaRocca was dead from a bloodstream infection brought on by severe bedsores. In testimony for a lawsuit brought by his family against the nursing home and later settled, Regeis’ own medical expert testified that antipsychotics given to LaRocca had “predisposed” the 78-year-old man’s skin to break down, which led to the bedsores.
Medical records show that soon after being admitted to the nursing home, staff began to administer two antipsychotic medications to LaRocca — even though he had no medical need for the drugs.
George LaRocca Jr., believes the antipsychotics killed his father. "They had him so drugged out he couldn't talk or eat,” LaRocca said.
For decades, researchers and regulators have known that nursing homes are prone to use antipsychotic drugs as a crutch to control patients. Research shows that the drugs — sometimes called “chemical restraints” because they can be the mental equivalent of strapping residents to wheelchairs and beds — can lead to falls, strokes, and even death. They are particularly dangerous for dementia patients. And regulators, while speaking out against the rampant practice, are failing to stop it.
An investigation into the use of antipsychotics at nursing homes in New York City shows the practice is widespread at facilities in the five boroughs — and loosely regulated. Among the findings:
{sidebar id=1 align=left}
• In New York City, about one-in-four nursing home residents – more than 9,400 people – were given antipsychotics in 2011, according to an analysis of the most recent data released by the Centers for Medicare & Medicaid Services. That’s out of a total of roughly 40,200 nursing home residents.
Antipsychotics are meant as a last resort, and are illegal if administered for the convenience of the staff. But the line is blurry because appropriate use is left to caregiver interpretation, so it is not always illegal. Abuse of residents with the drugs is difficult to prove, yet best practices mean they can often be avoided. Some nursing homes greatly reduce their dependence on the drugs to the point that almost none of their patients take them.
• An analysis of the CMS data also showed that one-in-three New York City nursing homes dose more than a third of their residents with antipsychotics. The loosely regulated use of antipsychotics is even more extreme in some of New York City’s 172 nursing homes.
At Riverdale Nursing Home in the Bronx, 59 percent of the 137 residents were given antipsychotics, including 16 percent of new residents, which is more than five times the national rate. Riverdale’s administrator, Mark Solomon, did not return calls for comment.
More than half of the 205 residents at Oxford Nursing Home in Brooklyn were administered the potent drugs. Oxford’s administrator, Norman Motechin, said he was not familiar with the numbers and declined to discuss them.
And, at the University Nursing Home in the Bronx, 49 percent of the 44 residents were taking antipsychotics, including 9 percent of new residents, which is more than three times the national average. Jennifer Capleton, the home’s director of nursing, claimed the data is wrong and said the facility was going through a state audit. She refused to elaborate. Medicare officials did not speak about the facility’s data specifically, but said the antipsychotic data is accurate.
• Analysis of Medicare data also shows that nursing homes with the highest rate of chemical restraints were associated with fewer nursing hours per patient, and higher rates of bedsores and depression.
• A review of inspection reports for the past three years for the 10 facilities in New York City that had the highest percentage of patients on antipsychotic drugs without medical justification revealed not a single citation for inappropriate use of the medications.
It’s impossible to tell from the Medicare data alone whether antipsychotic drugs are being abused by a nursing home. It’s possible that some of a nursing home’s patients, for instance, suffer from serious psychiatric disorders that would warrant the drugs.
When contacted for this story, however, the city’s nursing homes with the highest percentages of patients on antipsychotic drugs did not report significant populations of psychiatric patients.
The LaRocca family sued Regeis Care Center for negligence, because of the bedsores that led to his infection. There is no mention of antipsychotics in the case.
Regeis lawyer, Stephen Weiner, said the nursing home “followed the dictates of the doctors and psychiatrist management of the patient's medications, which were appropriate in his declining condition.” Weiner declined to discuss details of the case, and cited a confidentiality agreement related to the settlement, in which they admitted no guilt or liability.
Medicare contracts with individual states to license and inspect nursing homes. In New York, the state Department of Health is responsible for administering fines, or for shutting down repeat offenders (the city DOH has no oversight of nursing homes). Jackie Pappalardi, director of nursing homes at the NYSDOH, was asked to explain how publicly available Medicare data could show such a high rate of antipsychotic use, and yet the problem does not seem to show up in inspection reports by her agency. She would only say that her inspectors are trained to look for unnecessary drugs.
The Long Term Care Ombudsman Program also purports to protect the public, but shows no sign of addressing the problem of chemical restraints. The Ombudsman program, a partnership between the federal and state government, says it is “dedicated to protecting people” who live in nursing homes. In New York, the system cost taxpayers roughly $3 million in 2011.
Mark Miller, the New York state ombudsman, did not respond to multiple requests for comment over several months. Finally, he said through a spokesperson that “antipsychotics is outside their sphere of responsibility.”
Alice Bonner, director of the division of nursing homes for U.S. Centers for Medicare and Medicaid Services CMS, says the regulatory process to fix the issue is slow, but in motion. In March 2012, under mounting public and political pressure, Medicare started a campaign to reduce antipsychotic drug use from a national average of 24 percent to 20 percent by the end of that year. Results of the campaign are expected next month.
“I know I’m not going to wake up and the problem will be gone,” Bonner said. “We're putting in the infrastructure to see the improvements over the next several months.”
“CHEMICAL STRAIGHT JACKETS”
As early as 1975, legislators were using the term “chemical straight jackets” to refer to the ongoing problem of drugging the elderly for convenience. Chemical restraints — defined as drugs used to control behavior or restrict movement that are not a treatment for the patient’s medical condition — were banned in the landmark 1987 Nursing Home Reform Act.
Dr. David S. Sherman, who studied geriatric pharmacology at Harvard University, was testifying before a Senate committee when he compared chemical restraints to the use of electroshock treatment as means to punish mentally ill patients. “I think that at some time in the not too distant future we will similarly look back at this time, the routine drugging of our elders, as an equally barbaric form of treatment,” he told the elected officials.
Sherman spoke those words in 1991.
The most common and unchecked chemical restraints are the 22 antipsychotics with names like Seroquel, Risperdal, Haldol, and Zyprexa. Decades of studies have concluded that these drugs can be lethal when used on seniors who do not suffer from a serious psychiatric diagnosis. In 2005 and 2008, the Food and Drug Administration issued “black box” warnings to physicians, saying antipsychotics increase the risk of strokes and death in people with dementia. {sidebar id=5}
A November 2012 study by Dr. Dilip Jeste, a geriatric psychiatrist at the University of California San Diego, showed that one-in-four patients given antipsychotics over the long term were rushed to emergency rooms for life-threatening conditions or died. One commonly prescribed drug had to be cut from the study because it was associated with twice as many severe health problems than even the other antipsychotics.
Experts and some nursing home employees say the drugs are being used to control patients, not to treat serious mental health problems.
Studies show serious mental health problems are rare at nursing homes. A 2005 study by Harvard Medical School showed only 2.3 percent of newly admitted nursing home residents have a serious psychotic diagnosis like schizophrenia or bipolar disorder. And just 3 to 6 percent of long-term nursing home residents are diagnosed with schizophrenia or other serious mental disorders, according to a separate 2005 study by the Kaiser Commission. Only 1.1 percent of the U.S. population is diagnosed with schizophrenia, according to the National Institute for Mental Health. And yet an investigation by the Office of Inspector General in 2007 revealed that 88 percent of the Medicare claims for antipsychotics contradicted the FDA “black box” warning and were used for dementia.
BETTER CARE IS POSSIBLE, BUT ELUSIVE
If it’s well known that chemical restraints are dangerous, then why are they so common? The answer is ignorance, sometimes willful, on the part of the caregiving team, combined with a fragmented care system that makes it easy to rely on drugs to subdue patients.
Family members may unknowingly be part of the problem. Take the case of Abigail Dennis, who was struggling to take care of her mother, Anita Dennis, who has Alzheimer’s. The elder Dennis argued and screamed at her home health aide, so Abigail Dennis asked her doctor for help. He prescribed heavy doses of the antipsychotics Seroquel and Zyprexa. He gave no warnings.
“They turned my mom into a vegetable,” Dennis said of the drugs. “I had no idea about the risks, I just wanted her to be nice and not cause trouble for the aide.”
Dennis admitted her mom to Cobble Hill Nursing Home in Brooklyn, a facility that’s reduced its percentage of patients on antipsychotic drugs to 13 percent. Cobble Hill’s caregivers were shocked at the high dosages of the drugs, said Liza Long, head nurse of the dementia unit. They weaned the elder Dennis off them entirely. The nurses added that the elder Dennis went from kicking, biting, and screaming when she came off the drugs — to laughing and hugging everyone after proper care.
“I asked the staff what drugs they gave her and they said vitamins,” Dennis said.
Sufferers of dementia and Alzheimer’s are not just forgetful. In the later stages of these diseases, people can't express simple needs like hunger and pain. As a result, confused and frustrated, people lash out or behave in ways that are difficult to understand. Antipsychotics mute that behavior. But they’re not a safe solution, and less drastic measures are more effective.
Tony Lewis, the Cobble Hill administrator, described a resident who baffled staff when he regularly overturned tables at meals. It later turned out the large man was accustomed to being served his meal first in his Italian family. A dose of antipsychotics could have controlled the outbursts — but then again, so did bringing him his tray of food first.
Administrators like Lewis may be the nursing home insiders with the greatest influence on antipsychotic use. They set the standard of care, and the tone for caregivers. But Lewis said that without motivated administrators and caregivers, nursing homes settle for the status quo, which is geared for the use of chemical restraints.
Pharmacists who distribute the antipsychotics are spread thin – sometimes bouncing between four or more facilities across different boroughs. They can make recommendations about using such drugs, but have no authority over a nursing home’s medical staff.
Dr. Din Shah, who has been the pharmacist for 37 years at Providence Rest Nursing Home in the Bronx, said the facility's antipsychotic rate was at about 30 percent a decade ago. In 2002, a new medical director made lowering the dependence on the drugs a top priority. The rate dropped to 2 percent. That’s not the case at other nursing homes where Shah works, which have rates ranging up to 40 percent. He declined to comment about those facilities.
“I review the physician orders to make sure they comply with the regulations, but it’s a constant battle for behavior and for the safety of the resident and the other residents,” Shah said. “It has to be a team approach.”
Nursing home medical doctors often split their time among many facilities, overseeing hundreds of patients. Thus, they depend heavily on reports from nurses about patient health and may feel pressure to fulfill the requests of nurses who want help controlling patients.
Dr. G. Allen Power, a medical director at St. John’s Home in Rochester, said it’s difficult to respond to nurses who just want him to prescribe pills, and that antipsychotics are not the solution that they may seem. Power said nurses are often handed prescriptions for use on an "as needed basis" — which roughly translates to an open-ended license for nurses to administer such drugs. “In a lot of ways we’re creating excess disability,” Power said.
Rosanna Luna, the former director of nursing at The Buckingham at Norwood nursing home just west of Manhattan, said it’s not surprising that nurses often consider dosing patients with antipsychotics, because they often mistake the drugs as a safety measure, not a chemical restraint. Luna found a simple solution that dramatically reduced her nursing home’s rate of antipsychotic use. She forced her nurses to end their dependence on chemical restraints by requiring that they call Luna “day or night,” whenever they wanted to call the doctor for a prescription. She never got a call.
Medicare data show the use of antipsychotics at The Buckingham dropped to about 5 percent in 2010, a 66 percent reduction in a five-year period. Nursing homes too often lean on antipsychotic drugs to control behavior, Luna said.
“It’s easier to give residents a pill than sitting with them a few minutes to find out what’s bothering them and what’s causing them the distress,” Luna said.
LAX OVERSIGHT
Chaim Stern, the administrator at Bezalel Rehabilitation and Nursing Center in Queens, did not seem concerned that about half of his 117 residents were on antipsychotics in 2011. He refused to discuss the high rate of antipsychotic use. Instead, he pointed to Bezalel’s “five star” rating – the highest possible – on Medicare’s Nursing Home Compare website. Chaim said, “That's a whole picture of a facility."
But Medicare doesn’t include any metric to account for antipsychotic abuse in its rating system.
Regulators are sending mixed messages about the use of chemical restraints. They say they are most concerned about the safety of residents and that the use of antipsychotics must be reduced. But the oversight is toothless. Inspections that focus on the use of chemical restraints are virtually nonexistent. Penalties are rare, and some agencies intended to protect the public do not even concern themselves with the problem.
{sidebar id=6}
Modifying the data being reported by nursing homes is a big step in the process, said Alice Bonner of CMS, who worked 20 years as a nurse in nursing homes. Currently, Medicare requires nursing homes to report all “off label” use, which means the use of antipsychotic drugs in cases where patients do not have a psychiatric condition that warrants the use of such drugs. In addition, nursing homes must now report the percentage of new residents prescribed antipsychotics, which she said could signal inspectors earlier about problems.
Training inspectors has also been an important step, Bonner said, so they can identify when chemical restraints are being used and evaluate whether nursing homes have a process for weaning residents off the drugs.
Toby Edelman, senior policy attorney for the Center for Medicare Advocacy, says training is not enough. Even when inspectors flag these problems, the citations are weak. Nursing homes only need to respond to problems if inspectors mark violations as urgent. Nationwide, Edelman said, there were only four cases in the past six years of appeals by nursing homes for enforcement of antipsychotics used inappropriately. And the penalties were not severe. In one case, an Illinois nursing home accidentally killed a resident with an overdose of antipsychotics and was fined $4,400.
“Everyone should be outraged this is still happening. They have hearings about this every ten years,” Edelman said. “The standard has been around a long time and it just won’t happen without stiffer penalties.”
Richard Mollot, executive director of the Long Term Care Community Coalition, an advocacy group in New York City, said there’s no excuse for the overprescribing. “They're professionals paid to provide care,” Mollot said. “They have no idea how to not give dangerous drugs that sedate them and might kill them?”
And he said the ombudsman’s office should be speaking out about the problem. They may not because they’re too cozy with the industry, he said. In New York City, the ombudsman's office is housed with the New York Foundation for Citizens, a provider of senior services and operator of adult care facilities. The foundation receives grants from the New York State Office for the Aging to fund the ombudsman.
Paula Goolcharan, director of New York City's ombudsman system, says the relationship does not compromise the integrity of their work. Goolcharan would not speak specifically about antipsychotics or the ombudsman program, which is overseen by the state, and refused to continue the interview after a few minutes on the phone.
Without regulators paying close attention to the use of chemical restraints, patients and their families have little recourse when harm occurs.
Attorneys do not focus on the issue. Suzanne Flanagan, the lawyer who represented the LaRocca family, has worked on nursing home cases in New York City since 2003 and said families often complain that their loved ones are "drugged up," but it’s hard to prove.
"By the time we get cases, we don't have a witness because most people are deceased." Flanagan said. "The family just tells us what they think happened and we have to piece this together."
George LaRocca Jr. still tears up when he looks at the empty chair in the auto shop office where his dad once sat. It reminds LaRocca of better days.
"You'd blink and he'd be gone and walk a mile no problem,” LaRocca said. “He'd just be be-bopping down the road with his cane, but he'd always head home."
____
Elbert Chu is a science and education journalist. He’s worked for The New York Times, Popular Science, Fast Company, and ESPN. His documentary photography has spanned Lubavitch Jews and Orphans in Nepal, to the devastation of Haiti’s earthquake and a school shooting. He and his wife live amazed by grace in New York City. www.elbertchu.com | @elbertchu
