In its 111-year history, the Food and Drug Administration (FDA) has never deemed antipsychotic drugs an appropriate treatment for dementia. In fact, the FDA has gone as far as cautioning against administering the drug to elders, who could experience, among other side effects, blood clots, low blood pressure, and a nearly doubled risk for death.
This information either escaped the attention of certain U.S. nursing homes, or they consider antipsychotics a deadly risk worth taking.
An astounding, 157-page Human Rights Watch report published this week exposed dozens of these so-called “death prisons”: Nursing homes that not only dole out antipsychotic medications to residents with dementia, but overprescribe them. In a typical week, it estimates, more than 179,000 nursing home residents are given the drugs without approved diagnoses, their informed consent, or any idea of the risks.
Patients Harmed by ‘Unnecessary’ Antipsychotics
Between October 2016 and March 2017, Human Rights Watch researchers visited 109 nursing homes in 6 states: New York, California, Florida, Texas, Kansas, and Illinois. Besides the 24 facilities that denied researchers entry, the report is based on interviews with nurses, social workers, family members, pharmacists, long-term care experts, and residents, totaling 323 people altogether.
In these interviews, and a special report by CNN, family members described the drugged residents as “zombies,” “totally incoherent,” and “sleeping all the time,” unable to talk, read, remember anything, or recognize anyone.
That’s because these patients do not have schizophrenia, nor do they necessarily have other serious mental illnesses for which antipsychotics are approved to treat. Antipsychotics are defined as “chemical restraints,” which Health Care Financing Administration (HFCA) guidelines warn nursing home residents should be free from.
But we can only assume, by family members’ accounts, that nursing homes ignored the dangers of prescribing or overprescribing controlled substances. Some families were not informed of them; others felt forced into agreeing to administration, scared their loved ones would otherwise face eviction; a few had to persuade staff to take their loved ones off the drugs. And according to researchers, “chemical restraint” was the drug’s only purpose. To nursing homes, they said, antipsychotics are a cost-effective way to make patients easier to handle.
How Could Such a Thing Be Happening?
Wrongful prescription is just the type of scenario the Nursing Home Reform Act of 1987 was enacted to protect residents from. HRW researchers blame the government for doing little to monitor and regulate long-recognized and persistent problem of misusing antipsychotics.
The group found that between 2014 and 2017, although CMS inspectors issued more than 7,000 citations for violations tied to antipsychotics, they issued no meaningful penalties. But let’s step back for a moment. Should meaningful penalties ever be necessary?
“The U.S. government pays nursing homes tens of billions of dollars per year to provide safe and appropriate care for residents,” Hannah Flamm, a New York University Law fellow at Human Rights Watch, told CNN. “Officials have a duty to ensure that these often vulnerable people are protected rather than abused.”
The problems we see in HRW’s report – facilities’ reluctance to take responsibility for vulnerable elders’ needs, their readiness to silence rather than address complex conditions, and their failure to keep residents’ loved ones in the loop – are nothing new. They point to a much wider, far more persistent problem beyond medication.
The Larger Scope of Abuse
Powerful antipsychotic drugs aren’t the only tools nursing homes use to control their residents. Regulations prohibit physical restraints, as well as chemical, unless needed in extreme circumstances. But in nursing homes, extreme circumstances include patients who are simply prone to wandering.
Both forms of restraint, or any unnecessary force against a patient’s will, constitute abuse – an epidemic that plagues 1 in 3 nursing homes across the country. This abuse takes many forms, but usually materializes in understaffed, underfunded, and unsafe environments, where elder abuse lawsuits and CMS reports have uncovered countless cases of profit-driven neglect. Giving patients treatments they don’t need, for example, pays dividends in for-profit nursing.
Sadly, there are many more cases investigators are unable to expose. Nursing home abuse is severely underreported by both nursing homes and their residents. Some patients are too vulnerable or frightened to come forward. Nursing homes, meanwhile, keep these incidents under wraps fear of closure or gaps in funding.
HRW’s report was released within hours of a separate investigation by the Government Accountability Office (GAO), which examined the physical and sexual abuse, prescription errors, inappropriate discharge, and unexplained death among Medicaid enrollees in 2014. GAO confirmed just how serious underreporting has become: 26 states did nothing to track these “critical incidents.”
How Do Authorities Plan to Act?
The American population of 50 million over-65s is due to more than double by 2050. As America ages, Alzheimer’s disease and other forms of dementia are expected to follow a similar trend. Also by 2050, Alzheimer’s could affect 16 million people, up from 5 million today.
These are statistics nursing homes will need to keep in mind as the industry paid to care for our elderly loved ones. The HRW report outlines plenty of pharmaceutical-free ways to deal with dementia – geared toward encouraging relationships with familiar staff, reducing loneliness, creating routine, and offering activities and opportunities to exercise – that will require a complete overhaul of current standards.
The government can also claim responsibility for basic necessities, the report suggests, like ending inappropriate administration of antipsychotics, enforcing penalties, requiring informed consent, and ensuring care facilities’ sufficient staffing and training. GAO also outlined recommendations to CMS in its report, such as clarifying state reporting requirements.
“CMS appreciates the work done by the Human Rights Watch on this vital issue and is working towards a goal that ensures America's nursing home residents receive safe, high-quality care that is clinically appropriate,” the division said in a statement. Among those goals is reducing nursing homes’ overuse of antipsychotic medications by 15 percent before 2019. It’s a somewhat comforting forecast. But again: Should it even be necessary?