Improving Access to Patient-Centered Care With Chad Worz and Dr. Amita Patel

Show Notes

Equitable access to treatment is vital for older adults with Alzheimer’s and other neurodegenerative diseases, especially in long-term care. CMS’s Long-Stay Antipsychotic Medication quality measure aimed to curb inappropriate use in nursing homes, but it has also led to unintended consequences, limiting safe, effective treatment options for more than 3 million residents.

A new Manatt Health report, supported by the Alliance’s Project PAUSE Coalition, explores these impacts and offers recommendations to restore equitable care. Joining us to discuss the findings are Chad Worz, CEO of the American Society of Consultant Pharmacists and Project PAUSE convener, and geriatric psychiatrist Dr. Amita Patel.

Episode Transcript

Sue Peschin:

Hi, everybody. And welcome to This is Growing Old, the podcast all about the common human experience of aging. I’m Sue Peschin, and I serve as the President and CEO of the Alliance for Aging Research, and I’m your host today. When it comes to supporting older adults with Alzheimer’s disease and other neurodegenerative conditions, especially for those living in long-term care, equitable access to medication is essential. The Centers for Medicare and Medicaid Services, or CMS, has a long-stay antipsychotic medication quality measure. And we’re going to unpack that a little, so don’t worry. This measure was designed to curb inappropriate antipsychotic use in nursing home settings. And while it was a step in the right direction, it’s also created unintended consequences. This well-intentioned but flawed measure has limited access to safe and effective treatments for more than three million nursing home residents.

A new report that came out this past week from Manatt Health that was supported by the Alliance for Aging Research and released through the Project PAUSE Coalition that we’re a part of, and everyone else on this webinar is, along with a number of other partner organizations. This report from Manatt Health examines these unintended outcomes, and then offers recommendations for restoring equitable access for residents in long-term care. So joining us to discuss the findings today are Chad Worz, who serves as Chief Executive Officer of the American Society of Consultant Pharmacists and as a Project PAUSE co-convener with us at the Alliance, along with geriatric psychiatrist and expert, Dr. Amita Patel. Thanks to both of you so much for joining us today.

Chad Worz:

Absolutely. Glad to be here.

Amita Patel:

Thanks

Sue Peschin:

Absolutely. So before we get into the latest report on CMS’s nursing home quality measure and its impact on Alzheimer’s care, Dr. Patel, can you speak a bit about what neuropsychiatric symptoms are for folks who are listening in?

Amita Patel:

Neuropsychiatric symptoms include a broad range of behaviors that may present as anxiety, depression, agitation, psychosis, apathy, but agitation being the worst of these behaviors. That can be divided into, say, for example, verbally agitated behavior, like a resident who is constantly complaining all the time, constantly seeking attention or help, repetitive questions, being constantly negative. Or verbally or physically non-aggressive behaviors, like pacing to the point they don’t even sit down to eat a meal and losing weight, inappropriate dressing in layers that they get a heat stroke, or disrobing in public areas or in front of their loved ones, trying to get away from home inappropriately dressed, or leaving the house and getting lost, or performing repetitive behaviors that could endanger them or others. Or really physically aggressive behaviors, like hitting, kicking, biting.

Or really verbally or physically aggressive when you’re trying to give them care, or refusing medication, or refusing to eat, or refusing care when you’re trying to give them care, or scratching, or throwing dangerous items when you’re trying to really take care of them, or grabbing the caregivers that they both fall, themselves or the caregivers. Or other behaviors that can be very painful for the caregivers, like physically sexual advances, or intentional falling, that they can get hurt, or hiding their dirty undergarments. That can be very dangerous. So these are some of the behaviors that we see in lot of residents with dementia.

Sue Peschin:

So I think a lot of people have perception that Alzheimer’s disease and other neurodegenerative diseases primarily affect your memory, whether or not you can remember things, and maybe some of your functional abilities to do day-to-day activities, but it seems like neuropsychiatric symptoms aren’t talked about as much. And, Chad, I was just wondering if you had a comment about that and just why maybe we’re talking about it here, but you hardly ever hear about them.

Chad Worz:

I think a lot of it has to do with that they’re common in older adults, particularly in individuals in nursing homes. One of the reasons that they’re probably in the nursing home is some of these symptoms and these neuropsychiatric issues. And I think there’s a lot of interpretation of what they are. They can be related to Alzheimer’s and memory issues. They can also be related to being on the wrong medication. I wouldn’t be a pharmacist if I didn’t bring that up. So they’re broad symptoms, so they’re difficult for people to identify. And it’s challenging to dig down and figure out why they’re happening.

…clinicians are really discouraged from using really clinically appropriate treatment.

Sue Peschin:

Okay. Well, that’s a good segue into this next question. So I mentioned this study, this report that just came out from Manatt Health that the Alliance for Aging Research supported and Project PAUSE released, which is our coalition of organizations that care about these issues. And this report found that neuropsychiatric symptoms in long-stay nursing homes are oftentimes misdiagnosed and inappropriately treated. How does this misunderstanding of neuropsychiatric symptoms affect patients’ access to safe and effective care? And Dr. Patel, I’ll put that one to you first.

Amita Patel:

So this report has clearly shown that clinicians are really discouraged from using really clinically appropriate treatment. So the current CMS quality measure really assumes that nearly all antipsychotic use is inappropriate, unless the patients have one of the three diagnosis, which is schizophrenia, Tourette’s, or Huntington’s. And this measure that CMS has really put in for use of antipsychotics in long-term care for prescribing antipsychotics really is detrimental because antipsychotics can be really prescribed for FDA-approved use using proper APA guidelines for treatment of severe agitation, psychosis, or distress in dementia or other mental illnesses. But as a result of these measures, clinician feel the pressure to avoid these medication that could be meaningfully reducing the suffering or prevent harm for these residents. And consequently, especially for those who are agitated, aggressive, hallucinating, delusional, and in severe distress, often do not get access to these medication to stabilize them. And because of this, really, why? It’s because the facilities are really scared of reducing their star rating. And that’s why they do not get the access.

Sue Peschin:

Okay. So Chad, I’m going to ask you to back things up a little bit from what Dr. Patel was saying. She mentioned this Medicare long-stay antipsychotic medication quality measure. I think folks need to understand what are these quality measures? There’s this one for antipsychotics. What is it? And originally, it was designed, according to this Manatt report, as a really well-intentioned policy, and it was designed to curb inappropriate antipsychotic use, but it’s in more recent years created a lot of unintended barriers to treatment, as Dr. Patel said. So what is this measure? What are the major issues with it? Why are we talking about this today?

Chad Worz:

So I think, man, there’s a lot of ways I could answer this question, but tying the last question into this one, I think we have to go back in history. And 40 and 50 years ago, when we only had one bucket for dementia, we didn’t even have Alzheimer’s type or mixed or cardiovascular type dementia. We just had dementia. So put everything into a big bucket. We did really the same things with these neuropsychiatric symptoms. You were having these problems and symptoms. And all we had available to us were these first generation antipsychotics, like Thorazine and Haldol. And some of the ones that even speaking them out loud, people are like, “Oh, those are powerful antipsychotics.” And what ended up happening is that that was the knee-jerk reaction to some of these symptoms, again, 40 and 50 years ago. And so people were knocked out by these drugs and essentially they’re really blunted. And ultimately, there was a lot of inappropriate use because no one was unpacking what that symptomatology was really revealing about.

We didn’t unpack it to say, “Oh, this is Alzheimer’s dementia. Oh, this is … They’re actually having a UTI, and that’s why they’re acting this way.” So properly, the government looked at this and said, “What kind of measure can we put in place to curb this and get better attention to these residents so that they get to the right medication?” So they developed a measure that I think even at the time, those that were involved in the creation of this measure realized it wasn’t perfect and it was going to have some consequences. But the measure itself is just a simple how many people are on an antipsychotic in this nursing home divided by how many people are in the nursing home. So it’s a very simple rudimentary scale of, “Hey, we’ve got 15 people on antipsychotics. We have 30 people in this part of the nursing home. So our percentage is 50%.” And that’s the measure.

I think the national average hovers in the 14, 15% range, but that’s the scale by which CMS holds nursing homes accountable. And there isn’t really a goal identified, just to make it lower. And it isn’t sensitive to the setting. You could have a nursing home that’s very focused on neuropsychiatric conditions, which therefore means that they would likely have a higher percentage. You could have a rehabilitation nursing home that only takes short-stay residents and people that aren’t in a long-stay. They would have a unbelievably low percentage. So in terms of what’s wrong with the measure, I think the biggest problem is context. There’s no context to that number. It doesn’t tell you how many of those people on antipsychotics have appropriate use documentation. How many is it working for? How many are free from any side effects? It just tells you simply how many.

So when you look at a nursing home, you recognize that if you’ve seen one nursing home, you’ve seen one nursing home. They are 45 beds, 60 beds, 80 beds, 120 beds, 240 beds. Some of them in New York are 800 beds. So the percentage of people on antipsychotics really doesn’t give you a picture of quality of care or any indication of appropriateness. And that’s primarily why we’re concerned about this measure. We think that with fast-forwarding to today and all the technology we have, all the documentation we have, all the investment that’s been made in medications to this point that are very targeted for some of these conditions, that it would be better for us to identify where we know that there is an appropriate use, keep that person out of the measure and leave those that we’re not sure if you’re using this right. We’re not sure you’re using it for the right diagnosis. There’s no documentation here. And then we can focus on really individuals where there may be true inappropriate prescribing.

Sue Peschin:

Okay. Yeah. And, Dr. Patel, you had mentioned this earlier about this five-star quality rating system, which it sounds like it’s … And I’m familiar with it. I know it’s an online resource really for families or other professionals to sort of take a look at and compare and contrast different facilities. But Chad is saying that it lacks crucial context for patients and families and caregivers and other professionals sort of looking at it. So why is this context essential for achieving better patient outcomes?

Amita Patel:

Because families really misinterpret a star rating and may avoid high quality dementia care facilities because the star rating do not really explain that some antipsychotic use is really evidence-based, FDA-approved, guidelines recommended, and necessary to really prevent harm. And the facilities that are high acuity dementia care facilities really care … Especially good at caring for high acuity dementia patients may have high antipsychotic use, and that’s why their star rating might be low, but they’re really good at caring for those dementia patients. So the acuity really specifies the star rating, not by what the star rating is. Also, the most dangerous thing that has really happened with this measure is that because this measure only penalizes antipsychotic use, patients are now shifted towards less effective and more dangerous substitute medications, like anticonvulsants, antidepressants, benzodiazepines, anxiolytics, sometimes even opioid medications. And families do not realize that these medications are not approved for neuropsychiatric symptoms.

Then many of these medications carry much higher risk of falls, sedation, cognitive decline, dependence on the medication, overdose in older adults. And really, OIG has shown that the use of anticonvulsants has increased from 28% to 40% as since the measure for antipsychotic was implemented. And this is not evidence-based because it is not effective for treatment of neuropsychiatric symptoms. And these medications are more harmful. And of course, we are required, because of this measure, to do gradual dosage reduction, even when the medication is effective or the facilities do not want residents with these medications.

So may either refuse to take these residents, or discontinue antipsychotic despite the history of benefit of these medication, or refuse to initiate treatment which is necessary for the resident in an attempt to keep their star rating high enough, or do rapid dose reduction. And this can lead to increased agitation and aggression. And that’s by harm to the resident and the staff. It can lead to really danger, the resident itself, increased risk of hospitalization, facility-initiated discharges, 30-day notices for families because they can’t manage that resident, or falls and fractures for that resident, and really dangerous things. We are seeing other quality measure being affected because they’re not treating that agitation appropriately.

Sue Peschin:

Yeah. And I know that this also impacts people with serious mental illness because they don’t include … I know you said there were a couple of conditions that they exempt from being counted in the measure. So if you’re treating someone for schizophrenia or Tourette’s or Huntington’s, that’s not counted. But if you have bipolar disorder or other major depressive disorder-

Sue Peschin:

…those aren’t counted either. So I don’t doubt that CMS had a good intention to start. And maybe some of this gets into whether or not it’s really CMS’s job to be trying to get into the weeds around clinical care as much as they are saying they care about quality resident care, which of course we all do. But as a payer, whether or not it’s their role to really get involved in how clinicians decide with long-term care pharmacists like Chad and others, so medical directors and the long-term care pharmacists, how they decide to treat the resident when you have this federal agency with these regulations.

And I’ve seen these, it’s like 20, 30 pages worth. It’s a lot involved. So as a geriatric psychiatrist and expert, Dr. Patel, how can more patient-centered approaches to Alzheimer’s care help reduce inappropriate antipsychotic use? If that’s our mutual goal, what else can be done?

Amita Patel:

So as a geriatric psychiatrist and an expert, I always practice patient-centered approaches to Alzheimer’s care. A more patient-centered Alzheimer’s care really reduces inappropriate anti-psychotic use because it really changes the starting question. What drug will calm the behavior? No, that’s not what we think about. What is really this person trying to communicate with that behavior? What this person really need is what we start with. So drawing from that Manatt report, we really think about what are the best practices for dementia care? When we have that behavior, we really look at what is driving that behavior? So we think about pain, infection, constipation, urinary tract infection, urinary retention, delirium. Is this medication side effect? Is this withdrawal from medication? Is this sensory overload? Is this overstimulation? Is this under-stimulation, unmet social need? Is this trauma? That some kind of trauma is triggered? Is this environmental mismatch? It’s too much noise.

Is this patient being too rushed in their care? Or the staff member is not familiar with this resident. So we look at everything before we just slap on a medication. So we do the physical workup, we look at the environment, we look at the care issues. So we do our due diligence before we even think about a need for a medication.

Sue Peschin:

That’s great. Yeah.

Amita Patel:

everything else fails and if we cannot delay and the patient is in danger, then only we think about the use of medication. So make the non-pharmacological use first. And only the pharmacological when the behavior is danger to themselves and others and when all the non-pharmacological interventions have failed is when we use the medication. So patient-centered approaches and behavioral care plans should be always first, should be built around patient preferences, their life stories, and structured daytime activities, sleep hygiene, communication strategies and deescalation techniques, the staff education. And I can just go on and on.

Sue Peschin:

No, I so appreciate. I appreciate you and what Chad does. And go ahead, wrap up. What were you going to say?

Amita Patel:

And use of a antipsychotic should always be sort of time limited, goal-directed. And only use it when absolutely needed. And when we use it, we always, always do it first for severe, dangerous, and profoundly distressing symptoms. We always make sure that we have target symptoms. We always do consent with the family. And of course, we always monitor them very closely for side effects. In two weeks, four weeks, three months, we consider gradual dosage reduction. And that’s how our treatment plan always is.

Sue Peschin:

Yeah. You’re making me think that really the root of it is … And I really hope that some folks from CMS are listening in. If you are, hello. The root of it is should we really be designing policy around practices that are on the edge? Right? So I don’t think anybody disagrees that there have been nursing homes that have used antipsychotics as chemical restraints, right? But to create these massive and complex kind of regulations and processes in 20, 30 pages worth that really tie hands around clinical care, it creates more barriers to appropriate access than it does trying to prevent bad practice. So that’s, I think, the tension. And so now that the report is released, Chad, what should happen next? How can we ensure that long-stay nursing home residents and their clinicians are able to make decisions around appropriate access to treatments that are needed?

…how do we refine the measurement so that it can provide meaningful information about quality of care?

Chad Worz:

I think ideally, we have to all recognize that this measure that has been created has gotten us so far, that there were always going to be unintended consequences of it. And Dr. Patel talked about some of those unintended consequences. Every business measure, regardless of if it’s clinically related in a nursing facility or business-related in a company that makes widgets, has potential for unintended consequences. And how do we refine the measurement so that it can provide meaningful information about quality of care? To the extent that it’s part of the public disclosure, I think we really have to take a hard look at that. It reminds me of when we were measuring nursing homes based on how many opioids they were using for pain. And the ones that, in this case, were targeted as being bad facilities were the rehab facilities post-surgical where you would generally see a lot of pain medications used.

So the metric was retired because it really didn’t give patients or families the right insight into the quality of care just based on opioid use. Same thing’s happening with this antipsychotic one. I just talked to somebody that was working with a nursing home whose very conscientious owner, owner administrator was saying they really needed help with their medications, that they weren’t being managed properly. And when you looked up their antipsychotic percentage of this metric that we’re talking about, it was 6%.

Chad Worz:

It was half the state average. And, I think, as I mentioned, the national average is like 14%. So just at face value, you would look at that home, be like, “Wow, there must be doing a great job managing antipsychotics.” And here’s the owner administrator going, “Hey, we really need help. We’re using a lot of meds for a lot of things,” which just gives you that sense that this metric has squeezed the balloon and really said, “Don’t use antipsychotics.” But as Dr. Patel said, we’re using a bunch of anti-epileptics, we’re using a bunch of benzodiazepines, we’re using a bunch of antidepressants as some sort of surrogate for our inability to use the antipsychotic that might be targeting exactly what we’re looking for and giving us exactly the results that we’re asking for. So we have to get out of that.

We’ve got to get to a point where we’re really measuring appropriateness, targeting and creating a silo for inappropriate so we can dig a little deeper and figure out those potentially inappropriate uses by acknowledging, “Hey, these are used appropriately. They’re used for FDA-approved indications. That we’re following them objectively for benefit. We’re watching for side effects.” Let’s not count them as a negative. Let’s only focus on those places where we really are concerned or don’t have all the information.

Sue Peschin:

Great. Yeah. And Dr. Patel, I want to ask you a follow-up question because I know you both have mentioned a couple of times about other types of medications that nursing homes will go to. And I know we don’t want to give the impression that they’re just trying to figure out a way around the measure to drug people, right? It’s to be able to manage what somebody might be suffering with at a given moment in time and making sure that they have something to be able to help them. But I just wanted you to respond to that because we’ve had a lot of meetings with CMS. And at times, a couple of years ago when we would talk to folks, some of the response there might’ve been, “Well, they shouldn’t be doing that and that’s wrong.” But what is your response to that in relation to this?

Amita Patel:

And that was happening until about April 28th of 2025 when the new regulations happened. And now since April 28, 2025, the regulations have become very strict and it’s becoming harder and harder to use anticonvulsants and antidepressants, but still people are using benzodiazepines, for sure, which are really more dangerous because that can cause more cognitive decline and more falls and much more dangerous.

Sue Peschin:

Yeah. And the alternative in some of these cases is you release the person, right? I remember that there was a review by the HHS Office of Inspector General, or no, it was actually the Assistant Secretary, I think, for planning and evaluation that looked at involuntary discharges. And a lot of them are related to uncontrollable behavioral issues, right? So that’s the thing. It’s like what are we trading off here? And we have to have more dialogue because there’s got to be a better way.

Amita Patel:

Yeah. Really, what CMS really needs to do is to suspend or [inaudible 00:29:52] the long-stay antipsychotic medication measure in the five-star rating facilities. More high acuity dementia residents may appropriately have the higher use. And some antipsychotic use is clinically appropriate and guideline concordant really. And redesign the measure around inappropriate use because we can document the indication, document proper gradual dosage reduction. And really, we can define what our chemical restraint is as long as we document. Really, the federal and state policymakers, we can align better and we should fund better staff support for educating them on really how to manage neuropsychiatric symptoms in a non-pharmacologic programs so we always use non-pharmacological measures first before we jump to using medication. And [inaudible 00:31:03] we should form good tracks for how we can really invest in staff capacity and staff management in educating our staff better.

Sue Peschin:

Yeah. No, there’s a lot. And there’s a lot that we all support around that, right? This is not just a conversation about medication or no medication. Okay. So this was great. I thought it was really informative. We do have two final questions that we ask all our guests. And Dr. Patel, I’m going to ask you first. When you were a kid, what did you imagine growing older would be like?

Amita Patel:

When I was a child, really I imagined growing older and becoming wiser and really completely becoming independent. But caring for older adults now and growing older myself has really shown me a very different truth. I never imagined the vulnerability that really accompanies aging. I take care of residents in long-term care facilities. The really fear of losing the independence, of becoming dependent on others for basic things. Your world is really shrinking, not having the choice. But because of circumstances, I see that every day, my patients, the courage that it takes to trust others with your body, with your privacy, with your routine, with your memory. Aging just isn’t about wisdom. It’s about confronting your fear, your fear that you never anticipated. Small fears like fear of falling, fear of forgetting, burdening your loved ones, about losing your voice and making decisions about your own life. And just understanding that vulnerability really makes me human.

Sue Peschin:

Absolutely. What do you enjoy most about growing older, Dr. Patel?

Amita Patel:

What really enjoy most is my dual role about caring for the older and being a grandmother. These are very two things.

Sue Peschin:

Yes.

Amita Patel:

And that’s something incredibly grounding about holding a grandchild in one arm and then caring for someone in their 90s. It creates really powerful awareness of continuity of life. Where we come from and what we pass on. Every stage is such beautiful thing in my life.

Sue Peschin:

It really is. And that’s a beautiful answer. I love it. Chad, when you were a kid, what did you imagine growing older would be like?

Chad Worz:

Yeah. I think when you’re a kid, and when I was a kid, growing older was the next thing that you were going to accomplish. So being 16 and driving, was looking forward to that before I was 16. Being 21 and being an adult, having a beer was the next thing. Having a family was the next thing. But there comes a point when that starts to … You’re not looking forward to the 40-year-old birthday, the 50-year-old birthday. Everything goes reverse. I think as a kid, I was exposed to my grandparents. I think I thought growing old was cool until you got sick or had some problem that they had then had to deal with.

Sue Peschin:

So what do you enjoy most about growing older?

Chad Worz:

I think Dr. Patel had a great answer. I think it’s enjoying your family, really leaning in, trying to slow down what, again, as a kid, I wanted to have happen faster. Now I want everything to happen slower. So I think growing older is trying to enjoy all the facets of life because of your family, because of your friends, because of the work that you do. I think there’s a lot of meaning in the work. Those of us in long-term care and working with older adults, there’s a lot of meaning in that. And we want everybody’s life to be good, and that’s what we work for. So I think that’s what I enjoy currently about being old, not the knee pain and all the other things associated with getting older, but for sure.

Sue Peschin:

Yes. Well, thank you to both of you. I so appreciate what both of you do and what you give. I want to thank you for joining This is Growing Old. And thanks to everybody who’s listening today and to our podcast in general. If you want to check out the report we were talking about from Manatt Health, please go to our website at agingresearch.org. That’s where you can also hear more episodes of This is Growing Old. So thanks so much, everybody, for joining us today. And see you next time.

Amita Patel:

Awesome.

Chad Worz:

Thank you all. Enjoy the report. Thanks.