Antipsychotic drugs have helped many people with serious mental illnesses like schizophrenia or bipolar disorder. But for older people with Alzheimer's or other forms of dementia, they can be deadly. The Food and Drug Administration has given these drugs a black box warning, saying they can increase the risk of heart failure, infections and death. Yet almost 300,000 nursing home residents still get them.
So in 2012, the federal government started a campaign to get nursing homes to reduce their use of these drugs. But an NPR analysis of government data shows that the government rarely penalizes nursing homes when they don't get with the program.
Take Texas for example. More than a quarter of nursing home residents there still get antipsychotic drugs. Since the beginning of the federal initiative, the nationwide average has dropped below 20 percent. That puts Texas in last place compared with other states and the District of Columbia.
So Texas is playing catch-up. The state recently conducted a series of trainings to teach nursing home employees that there are alternatives to giving residents powerful drugs. Nursing home activities director Roxanne Stengel attended a session in Houston. She's been in the business for a long time. So it was not a surprise to her that Texas was in last place.
Check NPR's interactive database below to see the history of antipsychotic drug usage at nursing homes in your area and how they compare to national and state averages.
"I saw my fair share," Stengel says, of seeing the drugs used as a "form of control [and] restraint" in some of her previous workplaces.
"That's pitiful," she says. "There's got to be a better way."
In fact, the point of the Houston training event was to show that there is a better way to manage the anxiety or aggression that sometimes goes with dementia. It's one element of the national campaign started by the federal Centers for Medicare and Medicaid Services to reduce the use of antipsychotics in nursing homes.
The approach being taught is sometimes called individualized care. The idea is that if nursing home employees know enough about a resident, they can figure out the reason behind challenging behavior and deal with it without resorting to antipsychotic drugs.
For example, what should you do if you're caring for a resident who won't go to sleep and wanders the halls all night? Well, if you know he used to be a night watchman, you can just continue to treat him like one. The world won't come to an end if you deviate from the schedule and let him sleep during the day.
These principles should not have come as a surprise to the people at the training session in Houston. CMS sent out a series of DVDs with similar training to every nursing home in the nation two years ago.
But, for whatever reason, most Texas nursing homes lost the DVDs, according to Carmen Castro, the nursing home ombudsman for Harris County. She has offered to bring her DVDs to nursing homes and conduct on-site training, but she's had few takers. "Maybe less than 10," Castro says, "and we have 96 nursing homes here in Harris County."
The federal government calls its campaign to reduce nursing homes' use of antipsychotic drugs a "partnership." And the partners are the states, like Texas, as well as nonprofit groups, and the nursing home industry itself.
"I think the program is an example of a real success between the government and the private sector," says Mark Parkinson. He's the president and CEO of the American Health Care Association, which represents more than two-thirds of the nation's nursing homes.
The statistics in Texas may not be good, but Parkinson is focused on the bigger picture. Nationally, the use of antipsychotics in nursing homes has dropped by more than 15 percent since the partnership with the federal government began.
"I think that the data will continue to show that collaboration works," says Parkinson, "and that conflict and fighting don't work."
But considering the poor showing in Texas, maybe collaboration doesn't always work either. An NPR analysis of federal government data found that even though Texas nursing homes have the highest rate of antipsychotic drug use in the nation, they are less likely to be censured for it than nursing homes in most other states.
No surprise there, says Toby Edelman, a senior policy attorney with the Center for Medicare Advocacy. "We haven't seen any evidence that, in this particular area of antipsychotic drugs, the CMS is taking action against states."
Edelman says that what the government needs to do is enforce the Nursing Home Reform Act that was passed 27 years ago. That law says residents have a right to be free from "chemical restraints." It also says that nursing home residents should only receive antipsychotics if the drugs are medically necessary. And remember, the drugs are not approved by the FDA to treat symptoms of dementia. Edelman says the government needs to stop thinking of the nursing home industry as a partner.
"The initiative has been all about training, teaching, cajoling, encouraging, but not enforcing the law," she says.
But Dr. Patrick Conway, chief medical officer of the CMS, says that the government takes its regulatory and enforcement duties "incredibly seriously. It's the strongest lever we have."
The penalties for giving residents unnecessary medication can range from a "plan of correction," to civil fines, to being kicked out of the Medicare and Medicaid programs. "We try to use the full array of enforcement," Conway says, "including harsh penalties."
But again, NPR's analysis of CMS data found that harsh penalties are almost never used when nursing home residents get unnecessary drugs of any kind. Inspectors grade these deficiencies according to the severity of the offense. And only 2 percent of the infractions were ranked at a level that might trigger a fine or worse.
Conway's explanation: "There are many near misses, whether it's hospitals or nursing homes, where medication might be given that's not needed and doesn't cause permanent harm. We view that as a learning opportunity."
Conway points out that the initiative is ongoing. The agency's new goal for nursing homes is an additional 15 percent reduction in antipsychotic drug use by the end of 2016. But even if that goal is met, it will mean that after a five-year effort, almost a quarter of a million nursing home residents will still be getting largely unnecessary and potentially lethal antipsychotic drugs.
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Transcript
RENEE MONTAGNE, HOST:
Today, the second part of our look at the hundreds of thousands of nursing home residents who are given powerful antipsychotic drugs.
STEVE INSKEEP, HOST:
Those drugs are approved mainly to treat serious mental illnesses like schizophrenia and bipolar disorder. For patients whose only problem is dementia, the FDA has given warnings. The drugs can increase the risk of heart failure, infections and death. So in 2012, the federal government started a campaign to get nursing homes to reduce their use of these antipsychotics.
MONTAGNE: But an NPR analysis of government data shows the feds rarely penalize nursing homes when they don't. Ina Jaffe covers aging and found this report.
INA JAFFE, BYLINE: There has been progress. When the government program began, almost 1 in 4 nursing home residents were receiving antipsychotic drugs. Now it's less than 1 in 5. But that's still nearly 300,000 people getting potentially dangerous medication. And around the country, progress has been far from even.
(SOUNDBITE OF ARCHIVED RECORDING)
JOANNE MURTAGH: We are 51st in the nation. Why is Texas here?
JAFFE: In Houston recently, state official Joanne Murtagh told a hotel ballroom full of nursing home employees that Texas has the worst record in the country when it comes to using antipsychotic drugs in nursing homes.
(SOUNDBITE OF ARCHIVED RECORDING)
MURTAGH: Aripiprazole, which is Abilify. Olanzapine, which is Zyprexa.
JAFFE: More than a quarter of Texas nursing home residents still get these drugs.
ROXANNE STENGEL: Yeah, I saw my fair share of the drug use as a form of control, restraint.
JAFFE: Roxanne Stengel is a nursing home activities director.
STENGEL: That's pitiful. There's got to be a better way.
JAFFE: The point of this event was to show that there is a better way to care for nursing home residents with dementia. It's part of the national campaign to reduce the use of antipsychotics in nursing homes started by the centers for Medicare and Medicaid services known as CMS.
FRANK BARBER: Five minutes to put some ideas together and come up with a plan.
JAFFE: Frank Barber from the Texas Medical Foundation was teaching participants that if they treated each nursing home resident as an individual, they might not feel the need to use drugs.
BARBER: Ten seconds left.
JAFFE: Participants divided into groups and each had to show how they'd deal with a fictional nursing home resident.
UNIDENTIFIED MAN #1: He wandered the halls, refusing to go to bed, resisting care - appears distressed.
JAFFE: Digging a little deeper, this group discovered that their fictional resident was sleepless in Houston because he used to work as a night watchman. So they decided to keep treating him like one and not force him to go to bed at night.
UNIDENTIFIED WOMAN #1: Clipboard.
UNIDENTIFIED MAN #1: Oh, yeah. He'd have a clipboard, so he'd make sure he's checking off everything, and he'd have a flashlight. During the day, we let him sleep far away from the...
JAFFE: The federal government calls its campaign to reduce nursing homes' use of antipsychotic drugs a partnership. And the partners are states, like Texas, as well as nonprofit groups and the nursing home industry itself.
MARK PARKINSON: I think the program is an example of a real success between the government and the private sector.
JAFFE: Says Mark Parkinson. He's the president and CEO of the American Health Care Association, which represents more than two-thirds of the nation's nursing homes. The statistics in Texas may not be good, but Parkinson's focused on the big picture. Nationally, the use of antipsychotics in nursing homes has dropped by more than 15 percent since the partnership with the federal government began.
PARKINSON: And I think that the data will continue to show that collaboration works and that conflict and fighting don't work.
JAFFE: But considering the poor showing in Texas, maybe collaboration doesn't always work either. An NPR analysis of federal government data found that even though Texas nursing homes have the highest rate of antipsychotic drug use in the nation, they are less likely to be censured for it than nursing homes in most other states. No surprise there, says Toby Edelman, a senior policy attorney with the Center for Medicare Advocacy.
TOBY EDELMAN: We haven't seen any evidence that in this particular area of antipsychotic drugs that CMS is taking action against states.
JAFFE: Edelman says what the government needs to do is enforce the Nursing Home Reform Act that was passed 27 years ago. It says residents have a right to be free from chemical restraints. It also says that nursing home residents should only receive antipsychotics if they're medically necessary. And remember the drugs are not approved by the FDA for treating dementia. Edelman says the government needs to stop thinking of the nursing home industry as partners.
EDELMAN: The initiative has all been about training, teaching, cajoling, encouraging but not enforcing the law.
PATRICK CONWAY: We take the regulatory enforcement side of CMS incredibly seriously. It is the strongest lever we have.
JAFFE: That's Dr. Patrick Conway, the chief medical officer of The Centers for Medicare and Medicaid services or CMS. Nursing homes that are cited for giving residents unnecessary medication face a range of penalties says Conway.
CONWAY: Everything from a plan of correction to civil monetary penalties.
JAFFE: It does happen very rarely though compared to the bulk of the citations.
CONWAY: We try to utilize the full array of enforcement including harsh penalties.
JAFFE: But again, NPR's analysis of CMS data found that harsh penalties are almost never used when nursing home residents are given unnecessary drugs of any kind. Inspectors grade the deficiencies according to the severity of the offense, and just 2 percent of the infractions were ranked at a level that might trigger a fine. Conway's explanation.
CONWAY: There are many near misses, whether it's hospitals or nursing homes where medication may be given that's not needed, and it doesn't cause permanent harm. We view that as a learning opportunity.
JAFFE: Rather than an opportunity for punishment. Conway points out that the initiative is ongoing. The agency's new goal for nursing homes is an additional 15 percent reduction in antipsychotic drug use by the end of 2016. But even if that goal is met, it will mean that after a five-year effort, almost a quarter of a million nursing home residents will still be getting largely unnecessary and potentially lethal antipsychotic drugs. Ina Jaffe, NPR News. Transcript provided by NPR, Copyright NPR.
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