The Daily - A Hidden Shame in Nursing Homes

Episode Date: September 14, 2021

For decades, the law has sought to restrain nursing homes from trying to control the behavior of dementia patients with antipsychotic drugs, which are known to have adverse health effects. An alarming rise in schizophrenia diagnoses suggests some homes have found a way to skirt the rules.We hear the story of David Blakeney, a dementia sufferer whose health declined rapidly after he was placed in a South Carolina nursing home.Guest: Katie Thomas, a reporter covering the business of health care for The New York Times. Sign up here to get The Daily in your inbox each morning. And for an exclusive look at how the biggest stories on our show come together, subscribe to our newsletter. Background reading: A Times investigation into the widespread use of antipsychotic drugs in nursing homes. For more information on today’s episode, visit nytimes.com/thedaily. Transcripts of each episode will be made available by the next workday.

From The New York Times, I'm Michael Barbaro. This is The Daily. Today, a Times investigation finds that nursing homes across the U.S. are diagnosing and treating their elderly residents for schizophrenia at alarmingly high rates, even when there's no evidence of the illness. I spoke to my colleague, Katie Thomas, about the government loophole that allowed it to happen.

It's Tuesday, September 14th. Katie, tell me about David Blakeney. Tuesday, September 14th. Katie, tell me about David Blakeney. What I know about David Blakeney... How long were you two married? 42 years. Okay. Is through his wife of 42 years, Yvonne Blakeney. And she lives in South Carolina.

And how did you guys meet? I met him at my mama's house. Oh, okay. That was way back in the 70s. And she told me that they met through family. And at the time, she had four young children. One was just a baby. My youngest at the time was six months old. My oldest said she was six at that time. Wow. So that is a lot of work. And what drew her to him was that he said he would take care of them. He would take care of her and the children.

With four kids and you don't have nobody to help you. And he said, well, I'll help you with them, you know. And he told me he'd help me raise them and get me a house. And he did, too. And he did. They spent the next 40 years together. And he raised those kids as if they were his own. And tell me just more about him.

You know, what was he like? He was good. He worked every day. He would work every day. He worked for four decades as a farmhand. And she said he was a big, muscular guy. When he was like a young man. 250 pounds. Okay.

She said, you know, he once thought nothing of just scrambling up on the tops of those big irrigation rigs. You know, these farms, they got these big hot things that water the crops and stuff. And he would go up them things every day. To fix something and then right back down. He worked them hot every day. Yeah. You know, so he worked hard for most of his life. But when he was in his early 60s, his health just started declining.

And he developed dementia. his health just started declining, and he developed dementia. He became increasingly confused, forgetful. He would wander out of the house. People would bring him back home. He got so bad, you know, you couldn't keep him in the house. And he just walked away. He just did stuff that I was scared he was going to get hurt. Ms. Blakeney really struggled to take care of him. And eventually she just, you know, to her own heartbreak,

she concluded that she couldn't care for him herself. And so she brought him to a nursing home in South Carolina in October of 2016. So at this facility, she was really shocked at how quickly he declined. He was sleeping all of the time. I got pictures of him on my phone where I would take him and he would be sitting up in that wheelchair asleep. Yeah. That was sad. You know, even when she brought his favorite meals,

he wouldn't wake up. He just kept losing weight, kept losing weight. She started to see, you know, this once robust man. She could see his ribs sticking out. And, you know, he developed bed sores because he was just always in his bed or in his wheelchair asleep. Several months after he arrived, he actually had to have one of his feet amputated because the bed sores got so bad and then by eight months after he was at the facility he went from over 200 pounds to 128 pounds and eventually he died His death shattered his family, and they were heartbroken.

But Mrs. Blakeney was also really upset about the way he had been cared for in the last eight months of his life. She had seen what had happened to him and how quickly he had declined, and she felt like he hadn't been treated well there. And she wanted answers and accountability from the nursing home. So she hired a lawyer to sue the nursing home. And it was only after she hired the lawyer that she learned something that really shocked her, hired the lawyer that she learned something that really shocked her, which was that while he was in the nursing home, he was receiving a powerful antipsychotic drug. And not only that, but he had a diagnosis of schizophrenia. And why was that so shocking to her? Well, because she had been married to him and known him for more than 40 years.

And schizophrenia is something that is usually diagnosed in young adulthood. And there had never been any evidence that he had had schizophrenia or any other serious mental illness, you know. So to see that he had been diagnosed with this at the end of his life came as a surprise to her and just didn't seem right to her. So what exactly is happening here? Well, what happened to David Blakeney has been happening to nursing home residents for over 50 years, where nursing homes have been giving these antipsychotic drugs to dementia patients as an effort to control their behavior. And when you say control their behavior.

And when you say control their behavior, what do you mean? Well, you know, they've really been leaned on by the doctors and nursing homes to effectively kind of sedate them and to kind of make them easier to deal with. You know, some dementia patients have some really, really challenging behaviors. You know, they can wander. They can become agitated. They can strike out at staff and residents. And it's a really hard thing to manage, especially if you don't have the resources and the staff to deal with it. And so for a very long time, some nursing homes and the doctors that prescribe these drugs have used them as almost like a shortcut or a crutch in order to make it

easier to care for these patients. Almost sedating people into submission. Yes. And during all these decades that nursing homes have been doing this, has this been an acceptable and understood protocol? Well, it's certainly been a widespread practice, very, very common in nursing homes. But almost as soon as it became widespread, there was also pushback against it and people asking if this was the right thing to do. You know, there's a number of reasons to be concerned about it. It can deprive people of their dignity to basically control them, perhaps against their will. If you sedate someone, it can be harmful to their health, right? They can be more likely to fall. They can develop bed sores. They don't eat. They can lose

weight. They can become dehydrated. There's all sorts of medical reasons why it's bad for them. And it's also why it's been called by doctors and government officials and others who have objected to it, a chemical straitjacket. And, you know, in the 1970s, there was a congressional investigation and a report that outlined, you know, the harms of using these drugs in nursing homes. And then in the 1980s, President Reagan passed a law that essentially barred the use of any drug in a nursing home if it was what they called a chemical restraint, which they defined as a drug that was being given to somebody to meet the needs of the staff that was taking care of them instead of treating the patient himself or herself. And does that law work?

Well, despite the law, the problem persisted. And the Food and Drug Administration in 2005 put a warning on antipsychotic drugs and told doctors that there was nearly double the risk of death in older dementia patients for antipsychotics, which was kind of an unusual warning because there's no FDA approval for antipsychotics in older dementia patients for antipsychotics, which was kind of an unusual warning because there's no FDA approval for antipsychotics in older dementia patients. So it was also a nod to the fact that these drugs were being widely prescribed, you know, outside of their approved use.

Right, and a nod to the fact that that Reagan-era law probably hadn't really done its job. Yeah, that's right. And then years go by, and the problem is still bad enough that by 2012, there's a new groundswell to do something about this issue. And so the idea that they come up with this time is to require nursing homes to report how many of their residents are taking these drugs. And the idea there is transparency, you know, that any member of the public or the government could rely on these statistics in order to kind of evaluate whether a nursing home is a good place to put their loved one.

So the logic is disclosure would discourage nursing homes from abusing these drugs. Yes, that was the plan. But in doing so, the government created a pretty big loophole. And that loophole was that nursing homes wouldn't have to disclose people who are using the drugs if they had a small list of conditions. And one of those conditions was schizophrenia. And that might create a different incentive structure, potentially, which is it would allow nursing homes to diagnose people with schizophrenia and never have to report it, which might lead to people diagnosing schizophrenia maybe when it's not there. report it, which might lead to people diagnosing schizophrenia maybe when it's not there.

That's right. That's right. If they had a schizophrenia diagnosis, then it could potentially justify their use and that patient wouldn't be counted and wouldn't have to be reported in the public data. Okay. So what happens after this 2012 effort with this very big loophole is put into place? So even though these diagnoses are supposed to be excluded, you know, we got curious about what the number would be if they weren't. And so we wanted to investigate exactly that. And after a little bit of digging around, we found that since 2012,

the number of nursing home residents who were diagnosed with schizophrenia has soared by 70%. Wow. It's a huge increase. Yeah. And, you know, to put that into perspective, that's one out of nine nursing home residents. Hmm. Now, I mean, there could be some reasons why there would be more patients with schizophrenia in nursing homes. But we found lots of other evidence that these false diagnoses were helping to drive this increase. And just to compare that to the general population, the best estimates are that one in 150 people have schizophrenia. Compared to one out of nine in these nursing homes. Yes, that's right.

And once we saw those numbers, we wanted to dig in more. And that's what led us to the Blakeney family. We'll be right back. they never went over his medications with you? No, I didn't even know he was on no medicine. I want to know, you know, if he was on medicine, they should have told me he was on medicine. I would go see him every day, and I ain't never seen nobody give him medicine. When he was low, I fed him, and when he was asleep, I didn't bother.

Yeah. I knew he would sleep a lot, you know, and I couldn't wake him up, but I thought, you know, he would just, you know, just sleep, you know. I didn't know they was dumping him up like, you know, they was. Yeah. Because there was nothing wrong with him. He just had dementia, all I knew. Right. Katie, you had told us that the Blakeney family had a lot of questions about David's death.

They had hired a lawyer and they had sued. So what exactly did they learn through that legal process? So the lawyer got all of Mr. Blakeney's medical records. And then once he got them, he and his team started just going through them. he and his team started just going through them. And one of the things that he learned was that Mr. Blakeney had been getting Haldol, which is an old antipsychotic that dates to the 1960s that has long been used on nursing home patients to control their behavior. And how long had David Blakeney been getting Haldol? his home in Lancaster, South Carolina, where he was getting Haldol and a doctor there had given him a diagnosis of schizophrenia as well, even though his lawyer has said that there's no evidence

that he was ever evaluated for schizophrenia. And then he went home. He lived with his wife for a time until his condition declined again and his wife felt she couldn't care for him. He went into a hospital where he continued to get the drugs and where the hospital did not give him any diagnosis of schizophrenia. He had a lot of different diagnoses and conditions, but that was not on the list. And then eventually he ended up at the nursing home, And then eventually he ended up at the nursing home, Dundee Manor, where he would then spend the last eight months of his life. And it was there that again, a doctor gave him a diagnosis of schizophrenia, despite the fact that, you know, there was no evidence that he had ever had a psychiatric evaluation for the condition. Hmm. So two nursing homes are independently,

but without any psychological evaluations that the lawyer can find, diagnosing him with schizophrenia and treating him with this very powerful antipsychotic Haldol. That's right. And, you know, it's also worth just mentioning again that schizophrenia is a lifelong condition. It's something that you get in early adulthood. And, you know, in the medical records for Dundee Manor, the last nursing home, in his records, it says that he had an onset of schizophrenia while he was at the nursing home. Which you're saying doesn't really make sense,

because that's not how schizophrenia works. Exactly. The medical experts that I spoke to said that an elderly person getting a new diagnosis of schizophrenia is just extremely uncommon. Which raises the possibility that he was getting these diagnoses because that was a routine way that these nursing homes handled patients with dementia. They just wanted to sedate them. That's right.

records, he and his team found that there were several people at the home who started to raise questions about the medications that he was getting and the effect that they were having on his health. Like what? What were some of the questions they raised? Well, for example, a physical therapist who was seeing him in the medical records said that she was having a hard time doing her work because he was sleeping all of the time. You know, in kind of one memorable record, she talks about actually using a washcloth to try and wake him up, but not being successful. You know, another time a dietician, you know, he was losing weight very quickly. You know, he lost at one point 12 pounds in a single week.

Wow. And the dietician actually wrote a note to the doctor asking him to consider adjusting his medications because she said he was sleeping all day through his meals. So he wasn't waking up enough to eat. And perhaps most notably, an outside pharmacist whose job is to review the medications that nursing home residents are getting raises concerns about Haldol and another antipsychotic that he was getting. pharmacist, whose job is to review the medications that nursing home residents are getting, raises concerns about Haldol and another antipsychotic that he was getting, and writes in a note to the nursing home doctor that was treating Mr. Blakeney and said,

you know, hey, you should taper him off of these drugs. And the pharmacist actually referred back to that 2005 FDA warning, you know, about being really careful about using these drugs in older patients. And so on this form, there's a box for the doctor to check and that box is checked, disagree. And then there's a note below it that says staff feels need, There's a note below it that says, staff feels need. Huh. Which seemed to also call back to that early Ronald Reagan era law that warned nursing homes against giving patients drugs to meet the needs of the staff and not the needs of the patient. Right. The whole point was that this was not supposed to be about staff needs, but about what was best for Blakeney. Yes.

So after this doctor overrules the pharmacist, what happens next? Well, over the next several months, you know, despite the concerns that were raised by these different people, Mr. Blakeney continues getting Haldol and other drugs. And his condition continues to decline. He goes in and out of the hospital for a variety of reasons. And, you know, finally, it is June of 2017, and Mrs. Blakeney decides that she has to intervene. Did you want to move him because of the care he was getting? I knew they wasn't taking care of him. Yeah.

They was not taking care of him. And sometimes when you go, there would be nobody there. You know, it was like one or two people there. In the whole nursing home. And she starts looking around for a different nursing home that will take him. And so finally she finds a different home. And she gets him settled into the new place. But, you know, by then, David Blakely is out of time. Katie, I'm curious if you have called the nursing home where David Blakely spent the most time and had this terrible decline and what they have said to you about what happened to him.

I called them several times. I sent emails. I reached out to their lawyer and they did not respond to my request for comment. David died in 2017 before the pandemic. And listening to you describe this long history of what has happened to nursing home patients, I'm wondering if COVID-19 has made the problems that you have been describing worse. You know, many people that I spoke to who, you know, spend a lot of time in nursing homes say that there's several factors about the pandemic that likely made the use of these antipsychotics worse. You know, first of all, there's a desperate staffing crisis right now. And we know that when there are fewer staff, you know, there's been several studies that show that they're more likely to use antipsychotics. In addition, there is a need in an infectious

outbreak to keep problematic patients in their rooms. And, you know, it is very challenging behavior to have a patient with dementia who's wandering around when there's active COVID spreading in your nursing home. So both of those factors, not enough staffing, a need to keep these residents socially distant, you're saying would incentivize the abuse of these drugs. Yes. And in fact, when we looked at the data, that is what we found, is that there actually has been an uptick in the use of antipsychotic drugs during the pandemic. Katie, what would a nursing home, a typical nursing home, look like if drugs like Haldol

were not being prescribed in the way that you have found they are, on the scale that you have found they are, what would they look like, feel like? You know, there's many nursing homes that have successfully reduced their use of antipsychotics and found, you know, a lot of alternatives that don't include giving them drugs to kind of helping manage these patients and these residents' behavior.

But, you know, it takes resources. It takes staffing. And it takes a lot of other things that many, many nursing homes don't have. decades-long battle to curtail the use of these antipsychotic drugs and this kind of incorrect diagnosis of schizophrenia has pretty clearly failed. But I have to say that this seems to be a much larger problem here, which is with the entire nursing home industry and how we care or don't care enough for people in this country nearing the end of their lives. And during the pandemic, nursing homes became the great villains because so many people died there. And now your investigation is adding a new dimension to the problems at nursing homes.

So when we think about that whole industry, are we talking about a flawed system or at this point an entirely broken system? You know, there's a lot of people that when they talk about the nursing home system in our country, they would describe it as broken or, you know, in need of a complete overhaul. One reason is that the majority of nursing homes in this country are for-profit businesses. And that for-profit nursing home industry would also tell you that they're operating on extremely thin profit margins. They're not getting paid enough to properly staff their facilities and give their nursing homes the resources that they need. But I think almost everyone would agree that just caring for our older people in this country is just simply not a priority. And it's often really overlooked, which is really tragic because, you know, pretty much all of us are going to get there sometime.

Right. And we all have family members who are affected by this. So it affects everyone. You know, if we're lucky, we'll grow old. And the question is, you know, how will we be cared for when we are old? Katie, thank you very much. We appreciate it. Thanks so much for having me. What message do you want people to take from your husband's story?

Like what, what do you, what would you want people to learn from it? If you can take care of your mother, your father, whatever, take them home. Yeah. I would never put him in there. Never. Yeah. Don't just throw your parents away. Don't never. If you can take care of one, don't put him in no nurse's house. We'll be right back. Transcription by CastingWords On Monday, the United Nations warned of a humanitarian crisis in Afghanistan, saying that millions of Afghans could run out of food before the arrival of winter. Speaking at a conference devoted to the crisis, the UN Secretary General said that since the Taliban's takeover,

Afghanistan's poverty rate has soared and basic public services are nearing collapse. And let us be clear, this conference is not simply about what we will give to the people of Afghanistan. It is about what we owe. And House Democrats have released a plan to raise more than $2 trillion by taxing the income of high-earning individuals and profitable corporations. But the Times reports that the plan does not tax the wealth of the nation's ultra-rich, whose fortunes have soared over the past decade, and does not close the most egregious tax loopholes that they exploit.

Today's episode was produced by Asla Chaturvedi, Lindsay Garrison, and Stella Tan. It was edited by Dave Shaw and contains original music by Alisha Ba'i Etube and Dan Powell and engineered by Alisha Ba'i Etube. Our theme music is by Jim Grunberg and Ben Lansford of Wonderly. That's it for The Daily. I'm Michael Barbaro. See you tomorrow.