“It’s a well-documented human rights violation—and yet it persists in the 16,000 or so nursing homes throughout the U.S.,” says Hannah Flamm, author of a report, “How Nursing Homes in the United States Overmedicate People With Dementia.” The report was undertaken for Human Rights Watch, an international research and advocacy organization that expanded its focus to include older adults. The abuse of antipsychotics has been well documented by medical groups for years. But Flamm served as boots on the ground, visiting more than 100 nursing homes around the country and collecting anecdotal evidence from residents, their family members, administrators, ombudsmen, and long-term care experts.

The research was instigated on the heels of an alert issued by the Center for Medicare Advocacy, a nonprofit legal organization that branded the overuse of anti-psychotics in nursing homes “a national scandal.” The Human Rights Watch study focused on six states—California, Florida, Kansas, Illinois, New York, and Texas—chosen for reportedly high proportions of residents on antipsychotic drugs in skilled nursing facilities there.

And it found the scandal shows no sign of abating. In an average week, nursing facilities around the nation administer antipsychotic drugs to more than 179,000 people who have not been diagnosed with any condition the drugs have been approved to treat. Serious medical complications are common—including loss of independence, over-sedation, confusion, increased respiratory infections, falls, and strokes. What’s worse, most of those drugged have Alzheimer’s or another form of dementia—and another well-documented fact is that antipsychotics nearly double the risk of death in older people with dementia.

Drugs of First Resort

More than one in five nursing home residents in the United States are given antipsychotic drugs, a medication rate [https://mississippitoday.org/2024/09/19/mississippi-nursing-home-antipsychotic-drug-use/] that is more than ten times the rate of the general population. The rate is even higher in states like Mississippi, where one in four residents receive antipsychotics.

It is difficult to believe that so many nursing home residents suffer from conditions that antipsychotics treat, given that those conditions do not become more common with age. An experienced social worker who works in Mississippi’s nursing home industry suggests that nursing homes are misdiagnosing symptoms of dementia as psychosis and are trying to “drug away” problematic behaviors.

The concerns that Human Rights Watch raised in its 2018 report were echoed in a 2022 report prepared by the Department of Health and Human Services’ Inspector General. The report credited CMS with reducing the use of one category of psychotropic drug —antipsychotics — while noting that the nursing home industry responded by increasing its reliance on another type of psychotropic drug — anticonvulsants. As a result, the overall use of psychotropics remained constant.

The American Psychiatric Association issued a revised practice guideline on the use of antipsychotics to treat agitation or psychosis in patients with dementia in 2016. It states that “after eliminating or addressing underlying medical, physical, social, or environmental factors giving rise to manifestations of distress associated with dementia,” antipsychotics can be appropriate “to minimize the risk of violence, reduce patient distress, improve the patient’s quality of life, and reduce caregiver burden.”

The problem is the reality that, in nursing homes, where much of the caretaking behavior is hidden behind closed doors, many of the providers leapfrog past the requirement of taking a hard and honest look at why a person is agitated and fixate on “reducing caregiver burden.” What keeps the deadly dosing of antipsychotics coming, especially at understaffed facilities, is that it also makes the drugged residents “easier to manage”—uncomplaining, compliant, docile.

Uninformed Nonconsent

Another problem is that residents are often given the drugs without knowing it. Federal regulations mandate that nursing home residents have the rights to be fully informed about the treatment they receive there, and to refuse any treatment they don’t want. And the laws in many states have piled on added strictures, requiring that residents—or their family members or power of attorney agents—specifically give informed consent before being given antipsychotic medications.

But these protections are, so strong on paper, are widely ignored in practice.

• An 81-year-old resident in a Texas facility said: “Too many times I’m given too many pills. I ask them not to. When I say that, they threaten to remove me from the nursing home. They get me so I can’t think. I don’t want anything to change the person I am.”
• Admitted one long-term care pharmacist in Kentucky: “I don’t think antipsychotic drugs are presented well to the family in informed consent conversations. Because if it were, they’d all reject it. And when staff don’t inform them beforehand, then the family is not having a real choice.”
• And the daughter and power of attorney of a resident in a California nursing home said: “I had no idea, not at all, that the drugs were dangerous. I’m guessing most people have no idea.”
• And according to a long-term care ombudsman in Kansas: “It’s not explained to the family. I wanted them to explain the side effects. They weren’t going to tell the family that. The nursing home just said, ‘The resident could get aggressive.’ So the family agreed to it.”

Enforcement: Notoriously Lax

There are no shortage of laws and regulations prohibiting dispensing antipsychotics without medical diagnoses and without the informed consent of nursing home residents receiving them. But the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for ensuring that facilities comply with them, has been historically and notoriously lax in enforcement.

Under the lens of renewed public criticism, it created the National Partnership to Improve Dementia Care in Nursing Homes in 2012. The group, composed of state and federal agencies, care providers and various experts and advocacy groups, voiced the goal of reducing the use of antipsychotics. Since then, CMS has reported a decrease, along with an increase in alternative methods of treating the underlying difficult behaviors, without medication.

Some experts are skeptical about the alleged improvement, though, noting that the incidents are self-reported by the care facilities. And Human Rights Watch concluded CMS “is not using its full authority to address this issue”—and in fact, has recently limited both the regulatory standards controlling antipsychotics and the severity of financial penalties imposed on nursing homes that violate them. Tellingly, 97% of the citations given for the use of antipsychotic drugs found neither “actual harm” nor “injury” caused by them, which flies in the face of eyewitness reports. Inspectors just seem to be turning their backs on the problem.

Like most agencies, the regulatory philosophy that CMS follows depends on the administration holding office. Some administrations view nearly all regulations as an unnecessary burden on the regulated industry while others believe that regulations protect consumers from harms caused by corporate greed.

A longstanding regulation prohibits physicians from prescribing antipsychotic medications to nursing home patients for more than fourteen days, a period that may only be extended after a new examination of the patient and a physician’s determination that the medication is still necessary. In 2019, CMS proposed a new rule that would have allowed physicians to extend the fourteen-day period without performing a new evaluation of the patient.

CMS argued that the fourteen-day review is “overly burdensome” for nursing homes. Human Rights Watch opposed the change and recommended that CMS instead enforce regulations prohibiting the prescription of unnecessary drugs to nursing home patients, including antipsychotic medications. The proposed rule was withdrawn in 2021, after a new administration took office.

How to Take Action

Largely as a response to the pandemic, the current administration launched a nursing home reform initiative in 2022 that directed CMS “to identify problematic diagnoses and refocus efforts to continue to bring down the inappropriate use of antipsychotic medications.” Unfortunately, the initiative was not supported by regulations requiring nursing homes to obtain informed consent before administering the drugs. Given industry resistance to federal regulation, advocates for the rights of seniors are urging states to pass more robust informed consent laws.

Robyn Grant, director of Public Policy and Advocacy at the National Consumer Voice for Quality Long-Term Care says the biggest hope for change will come from insiders—residents, family members, and other caregivers—voicing their complaints directly to legislators and government agencies. “Legislators need to hear what consumers rather than industry and advocates have urged,” she says. “And CMS needs to hear from consumers on the receiving end of care.”

Those moved to agitate for change can find a storehouse of information on the misuse of antipsychotics in nursing homes in addition to talking points to include in advocacy letters on Consumer Voice’s campaign page.

(This article has been updated October, 2024 since it originally published March, 2018.)