DAVID GREENE, HOST:
For many people, one of the work fears is ending up in a nursing home. For some there's an even worse fear - ending up in a nursing home drugged into a stupor. This morning we have the first of two stories that show that fear is not necessarily misplaced. Almost 300,000 nursing home residents are currently receiving antipsychotic drugs. The drugs are meant to suppress the anxiety or aggression that can go with Alzheimer's and other forms of dementia. Antipsychotics are approved mainly to treat serious mental illnesses like schizophrenia and bipolar disorder. When it comes to dementia, the drugs have a health warning. They can increase the risk for heart failure or infections or death. NPR's Ina Jaffe covers aging and has spent months looking into this issue. Today, she introduces us to two families whose loved ones received antipsychotic drugs in nursing homes and suffered consequences.
MARIE SHERMAN: Did you have a hard night?
BEATRICE DELEON: I had a really hard night.
SHERMAN: You had a hard night where you couldn't sleep?
INA JAFFE, BYLINE: The woman who had the hard night is 75-year-old Beatrice DeLeon. Her daughter, Marie Sherman, is asking the questions. As Sherman tells it, her mother's nights aren't nearly as hard now as they were a few months ago when she was in a nursing facility near her hometown of Sonora, California. She didn't go there because of her Alzheimer's disease, says Sherman. She'd had some falls.
SHERMAN: We didn't want my dad to try to lift her, and we wanted to make sure she was safe.
MANUEL DELEON: I wasn't for it, really, but it was the best thing to do.
JAFFE: That's Manuel DeLeon, who's been married to Beatrice for 55 years. Nursing home staff told him that his wife was agitated, and they wanted to give her some medication for that. So he said, OK.
MANUEL DELEON: They kept saying that she was making too much noise, and they'd give her this medicine to quiet her down.
JAFFE: Federal law prohibits the use of antipsychotic drugs for the convenience of staff. It's called a chemical restraint. There has to be a documented medical need for the drugs.
MANUEL DELEON: But they gave her more and more, and I noticed when I used to go see her, she'd just kind of mumble like she was, like, lost.
JAFFE: Daughter Marie Sherman says that when her mother wasn't lost she was, quote, "out of her skin."
SHERMAN: I mean, she was calling for help. She was praying, our father, who art in heaven, please help me, please take me, please get me out.
JAFFE: It turned out Beatrice DeLeon was given Risperdal and Seroquel, which are approved to treat bipolar disorder and schizophrenia. But Professor Bradley Williams, who teaches pharmacy and gerontology at the University of Southern California, says antipsychotics should only be used as a last resort, and just for a month or so before gradually being eliminated.
BRADLEY WILLIAMS: They change behaviors. They blunt behaviors. They can cause sedation. It increases their risk for falls.
JAFFE: And in the vast majority of cases, the drugs aren't necessary.
WILLIAMS: And if you just want to get to the very basic bottom line, why should someone pay for something that's not needed?
JAFFE: But residents or their guardians may not know the drug's not needed, and they're rarely told about the serious risks, says elder law attorney Jody Moore. She's sued nursing homes in California for failing to get informed consent when they use antipsychotic drugs, as required by law.
JODY MOORE: And we learn that the families really weren't told anything other than the doctor has ordered this medication for you. Please come sign a form, and families did.
JAFFE: One of her clients is Kathi Levine. Her mother, Patricia Thomas, had Alzheimer's, but she had been doing fine living in a memory care facility near Santa Barbara, walking and talking, dressing and feeding herself. Levine remembers that in 2010, she visited her mother one day when there was a party going on with a Hawaiian theme.
KATHI LEVINE: And my mom was standing up with a lot of the other ladies doing the hula, imitating the women on the stage, and it was hysterical. And she pulled me up off the chair and said, hula with me, it's fun. And I think that was about the last time I remember her having that, you know, I-love-my-life kind of a look on her face.
JAFFE: Not long after that, Patricia Thomas fell, fractured her pelvis. After a brief hospital stay, she went to a nursing home for rehab.
LEVINE: But within a week, she was in a wheelchair, slumped over, sucking on her hand, mumbling to herself, completely out of it, not even aware that I was there.
JAFFE: Her mother was so out of it, she couldn't do the rehab work that was the reason she went to the nursing home in the first place, so they discharged her. That's when Levine first saw a list of her mother's medications.
LEVINE: I literally freaked out. I couldn't believe all of these drugs on the list for my mother.
JAFFE: Among them were Risperdal and Haldol, both powerful antipsychotics. Levine tried to slowly wean her mother from the drugs, but Patricia Thomas remained in her wheelchair. She never had another conversation. She was dead in two months.
LEVINE: When you're your parent's caretaker and their guardian and things like this happen, you feel terribly guilty. I know the medication they gave her weren't my fault, but the guilt's still there. It's always going to be there.
JAFFE: So Levine and her attorney, Jody Moore, brought a first-of-its-kind class-action lawsuit against the nursing home, charging wholesale violation of informed content. Moore is a seasoned attorney, but she was amazed at a deposition she took from one of the doctors who said...
MOORE: Not only do I not get informed consent, but I don't know of any doctor who does, and you're crazy to think that that's my job.
JAFFE: The nursing home settled, but this facility really wasn't out of the ordinary when it came to dispensing unnecessary antipsychotic drugs. In 2011, a government study found that 88 percent of nursing home Medicare claims for antipsychotics were for treating symptoms of dementia, even though the drugs aren't approved for that. So the next year, the federal government started a campaign to reduce nursing homes' use of antipsychotics. Dr. Patrick Conway is the chief medical officer for the Centers for Medicare and Medicaid Services.
PATRICK CONWAY: And we set a goal - a 15 percent reduction.
JAFFE: Which was supposed to take less than a year. It took almost two. And it still left almost 300,000 nursing home residents on risky antipsychotic drugs. But Beatrice DeLeon is no longer one of them.
BEATRICE DELEON: Am I all right now?
SHERMAN: You are all right, Mama.
JAFFE: DeLeon is now home again with her husband. The family found a state program that sends health aids to the house. These days she doesn't take anything but her Alzheimer's medication. It seems to be enough.
BEATRICE DELEON: Can you kiss me?
SHERMAN: Of course I can kiss you.
BEATRICE DELEON: I love you guys.
SHERMAN: I know you do, Mama, we love you, too.
BEATRICE DELEON: Thank you.
JAFFE: Ina Jaffe, NPR News.
STEVE INSKEEP, HOST:
Many people are listening to this and wondering if it applies to a nursing home where they have a loved one or have thought of going. Go to npr.org. We have information on antipsychotic drug use at thousands of nursing homes around the country.
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