Delirium in the Hospital: What Families Need to Know

Dr. Weiss: As I was reflecting about this podcast and delirium and how I started to appreciate and understand it, it was actually in my personal life when I was in med school still. I don't think I knew what delirium was, and I had never seen it yet, but I had a grandmother who got really sick in the ICU. We flew out to North Carolina to see her, and I walked into the room; she was on a ventilator, very sick, and she did not recognize me or any of us.

I didn't really understand at the time what was going on quite yet, but that was kind of my first introduction, was just seeing how devastating it was emotionally to me, seeing my grandmother that sick, not able to interact with us. And that was kind of the beginning of my journey with delirium.

So this is the really interesting thing about delirium, is it comes and goes even in the hospital. I remember this very distinct moment. The rest of my family had left, and it was just me and my mother. It was really late. I feel like it was 10:00 p.m. at night, but we wanted to just hang around because we were leaving the next day. We're talking to her, and we look over, and all of a sudden, she's with us again.

I remember I was getting married and I had these photos of my bridal shoot, a photo of me in my wedding dress. I showed it to her and her eyes lit up. And for that moment, she was back again. It was just the craziest thing I had ever experienced, to have her be in another world and then come back to us just for that moment.

The next day, we come back in again; she's sick and not with us. And so it's just a very interesting thing to see how it comes and goes, and people are better in one moment and worse in the next.

Interview: Yeah. Confusing and scary, I bet.

Dr. Weiss: Yeah. Very.

Delirium Is Acute Brain Failure, Not Normal Aging

Interview: So if somebody you love is going into the hospital or has recently come home and something seemed off, as we've alluded to, this conversation is going to matter to you.

We're going to talk about something that happens to a lot of older adults in the hospital, and most families don't know what to look for, why it happens, or what you can even do about it. And if you're at University of Utah Health, the good news is you should also know a lot of this is already going to be done for you.

Dr. Roxanne Weiss is a hospitalist and geriatrician. She's board-certified in both internal medicine and geriatric medicine, and is also the Hospital Elder Life Program Medical Director, also known as HELP.

So let's expand on your experience a little bit. Somebody's parent goes in the hospital, or grandparent; it could be routine, it could be a hip replacement, maybe an infection, or it could be something not quite so routine, a little bit more involved. But a few days later, you notice something is wrong. Your loved one is confused; they're not making sense, they're not themselves. What exactly is happening to that person?

Dr. Weiss: If you would have asked doctors or medical professionals 50 years ago, I think the response would have been, "This is just what happens when older adults are hospitalized. It's normal for older adults to become confused in the hospital," back in a time when we did not recognize this condition and did not diagnose or treat it or prevent it.

And so I think, thankfully, now, starting a couple of decades ago, we have started to recognize that this is not a normal thing that happens to older adults. When older adults get confused in the hospital, we often worry about this thing called delirium. This is this acute confusion that can happen.

I actually like to refer to it as acute brain failure, because I think it kind of gets at the emergency. It is a medical emergency; how serious this sort of thing can be when we develop confusion in the hospital.

Delirium vs. Dementia: What’s the Difference?

Interview: You mentioned that doctors didn't know what this was going on. And I think that's a dangerous thing when we start making assumptions that, "Oh, this is just something that happens when people get older." There are a lot of instances where this can be a dangerous assumption.

And it's great to know that this is not just something that happens when older people go into the hospital. This is actually something that we can do something about.

So I'd imagine, for some people, they're a little scared, though. They think, "Oh, my loved one is starting to get dementia all of a sudden. Then there's something going to be permanently wrong." What is the difference between delirium and dementia?

Recognizing the Signs of Delirium

Dr. Weiss: Delirium that you might see in the hospital or before coming into the hospital really is a very dramatic change that happens over hours to days. I think it's something that is very clear to loved ones when they do recognize it.

And the behaviors that we see in delirium can have a lot of overlap with dementia, but are often different. The prominent ones that we see with delirium are:

• Inattention
• Inability to focus on things
• I think as a loved one, you might see some changes in personality or even how people are behaving emotionally.

I think in the more dramatic forms of delirium, we can see our loved ones or the people we're caring for:

• Hallucinating
• Or sometimes, becoming less interactive, not responding to our questions.

So I think that the big differences are really how quickly the onset is.

Interview: And delirium is the brain under acute stress. Is that an accurate assessment of what delirium is?

Dr. Weiss: Yeah. I would call it acute brain failure, right? We can have acute heart failure where our heart is not pumping like it should, and we have delirium, which is acute brain failure. Our brain is not working as a result of the stresses that we can have both outside and inside the hospital.

The Two Forms of Delirium: Hyperactive and Hypoactive

Interview: Got it. And I understand that up to one to three hospitalized patients over 65 go through this. So it's not uncommon.

Dr. Weiss: It is incredibly common. As a hospitalist, I see it every single day, so it is a very common thing. And I want people to kind of normalize it, and people to know that it does happen to a lot of different people. The more we talk about it and recognize it, I think the better everyone will be.

Hyperactive Delirium

Interview: So you did talk about kind of how it manifests. I understand there are two forms: an agitated version, and this is a little bit more easy to recognize, and then there's this kind of quiet, withdrawn version, which is a little bit more difficult. Is that an accurate statement as well?

Dr. Weiss: We call it the hyperactive form. That's our patients that are trying to jump out of bed, pull out IVs, very easy to recognize as health care providers and family members or care partners, loved ones.

Hypoactive Delirium

There is the hypoactive one, which I think is the most challenging to deal with and the most dangerous. And it's really because people just become less interactive. They often appear sleepy. And so I tell my learners when I'm rounding, "These are things that we have to be looking out for."

It's easy to say, "Well, they didn't get good sleep in the hospital last night. We were doing vitals all night. The IV was going off. So they're just sleepy. There's nothing wrong. They're just tired from having a rough night." That's, I think, why it gets missed quite often if we're not actively looking for it.

Families Are the Best Experts on What’s Normal for Their Loved Ones

Interview: And I think it's important also for listeners to realize that the family is the care team's best informant on this sometimes. You know what your loved one is normally like. So, in this more quiet version, you might recognize, "Hey, something is not quite right."

And I understand that you would like people to say something if they notice that. Is that what you encourage?

Dr. Weiss: Absolutely, Scot. I think even as I'm meeting people in the emergency room about to admit them, I think that's one of the biggest things I stress as loved ones are getting hospitalized. It is so helpful to have you here to raise the red flags when they come up, if they're behaving differently than you would expect. I think that is so critical to tell the team. You are the best advocate for your loved one in the hospital.

What Happens When Delirium Goes Unrecognized?

Interview: So let's go to the chain reaction. Let's say delirium goes unrecognized for whatever reason. Nobody catches it. The family and the physicians just assume it's part of getting older. Of course, we know that physicians do have some idea that it's going on, but maybe it's that quiet form, and they didn't quite recognize it. What happens from there if it's not recognized?

Dr. Weiss: If it's not recognized and the problems that led to it aren't addressed, it continues on, right? It gets more severe.

We know that patients who get delirium in the hospital, if we're not able to address it quickly, the outcomes of these patients are worse. They stay in the hospital longer. They wind up in nursing homes more often. They have complications of the hospital stay. They have falls in the hospital.

We know through decades of evidence that these patients do worse. And so, really, the best thing we can do is recognize it early and address it early.

If patients aren't getting up and moving, they get weaker. But also, when you're confused in the hospital, they wake up in the middle of the night, and nobody's around, they start to try to get up. They're tethered to an IV pole; they have a catheter in somewhere, and that puts them at a huge risk of falls.

Interview: And then that leaves the families thinking, "Well, we came to the hospital, we had one problem, now we've got a second problem." That could be really frustrating, I bet.

Dr. Weiss: I cannot imagine as a family member having someone develop delirium that goes unrecognized and how devastating that must be as complication after complication arises.

Preventing Delirium Is Better Than Treating It

Interview: Right. So when it comes to delirium in the hospital, is it about prevention or is it treatment?

Dr. Weiss: The best thing we have is prevention. There are no effective treatments, unfortunately, for delirium once it has developed. But we do know that about 40% of cases of delirium in the hospital can be prevented. And so that is really the best thing we can do for our patients, is preventing it from happening in the first place.

Interview: All right. And what are some of the ways that you do that or family members can do that?

Dr. Weiss: So it sounds so simple that it almost doesn't seem true, but it's really addressing basic human needs. And the one evidence-based thing we can do in the hospital is part of this program called the Hospital Elder Life Program.

That was something that was invented, in I think it was 1999, with what we call high-touch, low-tech interventions to just keep people engaged. It's addressing basic human needs, making sure they have their hearing aids, making sure they have their glasses available so they can hear the medical team when they're coming to talk, making sure they stay hydrated, reorienting them throughout the day so they know where they are and what time of day it is, making sure we get good sleep at night.

These all seem like very basic things to address our needs, but that is really the bulk of what we do in the Hospital Elder Life Program and how we can prevent delirium.

Interview: How amazing is that, that it's not a drug, it's not some high-tech treatment, it's just providing for basic needs. That's just mind-boggling to me in our world of high tech. How about for you?

Dr. Weiss: Yes, I'm still amazed. And I tried to think of another scenario where this sort of thing works, right? What other condition can we prevent with such devastating effects if we don't prevent it that's so simple?

I'm so used to prescribing drugs, infusions, procedures. And here is this very simple solution to such a devastating condition. It's pretty beautiful, actually.

The Hospital Elder Life Program (HELP) at University of Utah Health

Interview: I want to talk what University of Utah Health has built because the program is pretty incredible. Before I do that, I want to drill down on what any family can do at any hospital to protect their loved one from delirium.

So you alluded to some things, make sure they have their glasses, their hearing aid, their dentures. I would imagine asking the care team about delirium risk before and after the surgery. That's a conversation I've heard that you should have. Is that accurate?

Dr. Weiss: Yeah. So I would say those coming into University of Utah, things you can do for your loved one aside from making sure they have their glasses and hearing aids, which has more profound of an impact than you would think, is also talking with your team about the Hospital Elder Life Program. Getting them involved right when you get through the hospital doors is a really big thing.

The next thing I would say is advocating for your loved one, right? Being in the room when the medical team is there so that you can alert them to any changes in their behavior or cognition is another really big part of what loved ones can do.

Interview: Yeah. And I've heard if something seems off, you just really want to say it directly and clearly, like, "This is not how they normally are." Make sure that that really gets through.

Dr. Weiss: Exactly. Yeah. I love having family members there. Sometimes it's difficult as a provider, especially if your loved one has dementia, right? We're not sure exactly what things are like outside of the hospital. So having a loved one be like, "I know what my loved one is like, and this is not it. They are different," that is a huge red flag in my mind that makes me really dive into what could be going on.

Interview: You're the medical director for the HELP program. From what I understand, and you alluded to this, it came from a 1999 study, I think. I think it was a doctor out of Yale, if I remember correctly.

Dr. Weiss: Yep. Sharon Inouye.

Interview: Yeah. So this has been around for a while. It's very much evidence-based. Tell us how it came to University of Utah Health then.

Dr. Weiss: So I will give credit to the prior chief of geriatrics, Mark Supiano. He was a wonderful leader and recognized this program and its importance early on, and he brought it. We were one of the earlier hospitals to adopt this program, which I'm pretty proud of, and are now still a center of excellence for this program.

Another really cool thing that's been happening at the University of Utah is the support for this program has grown exponentially since I took over. I think it was two or three years ago.

So the core of this staff of this program are our elder life specialists, and those are our kind of volunteer coordinators. We have elder life nurse specialists. Those are the nurses that provide their expertise. And then the real heart of it is the 35 volunteers that actually do all the interventions for our patients. So that's kind of the core team.

We go pretty much all over the hospital, which I think is incredible. And we're expanding into other spaces. I feel like all the time we're getting people reaching out to us saying, "Hey, can you come to the burn ICU?" or, "Can you come to this unit?" I think people are really starting to recognize how incredible the program is and what we can do.

Simple Activities Can Keep Patients Engaged

Interview: And some of the things that volunteers do, I guess . . . So they'll sit with the patients. They'll help them do some gentle movement because we know that movement as early as possible is very helpful. They'll play cards with them. Is that true?

Dr. Weiss: They do. They do all kinds of things. And honestly, we talk to the patients as we're enrolling them in the program to figure out what they like, whether that's knitting, whether that's cards, whether it's just reminiscing about events that have happened in the past. So we really kind of tailor what we do to the patient.

But cognitive stimulation is a really big part of it. You're right on that mobility . . . so if they're not able to get out of bed, just doing range of motion to keep those muscles moving is a big part of it.

• Making sure the patients have access to water on their bedside.
• Making sure they're able to lift the big liter water jug to their mouth.
• Helping them drink.
• Helping them eat.
• Opening that carton of milk that they might not be able to open themselves.

So, again, these really simple, high-touch, low-tech sort of things to support people through this really challenging time.

Interview: I'm hearing things that can help reduce the stress so they feel more comfortable, because I'm sure there's a certain level of stress of not being in their own environment, their own home anymore, and being in the hospital, and then things to keep them cognitively engaged and physically engaged. Does that kind of sum it up?

Dr. Weiss: That's perfect. Yep.

Interview: If somebody's at a health care organization that doesn't have this, it really tells us as family members and loved ones . . . Sometimes it can seem like, "I don't know what to do for my loved one who's in the hospital right now." But I think you've outlined a lot of great things that you can do that research has shown can help prevent delirium. So when they come out of the hospital, they're just as sharp as they were when they went in.

Dr. Weiss: Yeah. Thanks for bringing up that point, Scot, actually. There is a clinical trial that we're doing that is looking at how we can involve family members in these interventions to test how effective it's going to be.

And I am confident that we are going to see as robust of a response by just family members reminiscing about the past, exactly like you're saying, making sure they're moving, making sure they're hydrated. I think that these are all things that family members can do at bedside to prevent delirium.

Age-Friendly Care Starts With the Four Ms

Interview: So I understand that this is bigger than one department. You've alluded to that the HELP program is moving into other departments as well. University of Utah Health holds the highest possible designation in the national Age-Friendly Health Systems Initiative. What does that actually mean for the patient walking through the door in any department and not just yours?

Dr. Weiss: Yeah. I'm glad we're talking about this. I have seen such a dramatic change in how we as a health system are approaching these patients and the level of support that The U has started providing to geriatricians and all people providing care to older adults.

And so I think everything is rooted in this principle called the Four Ms, which is a way to provide care to patients that focuses on what's most important to them.

And as you walk through the clinics or the hospital, I think you're going to start seeing more and more that the way we deliver care is focused on really what matters to the patient. I think that's going to become more evident as time goes on. I've just seen such a dramatic change, such a dramatic response to the leaders and focusing on this age-friendly care in general.

Interview: What are the Four Ms?

Dr. Weiss: Sure. So it is:

• Mobility
• Mentation
• Medications
• And what matters most.

Interview: Those are the core tenets when you're giving care to older adults that really matter.

Dr. Weiss: Yeah, kind of the framework we're supposed to be using when we approach older adults throughout the health care system.

What to Do After Delirium: Recovery Takes Time

Interview: And if you want to learn more about that, we'll link to another podcast where we talked about the Four Ms and how important they are. If you come to University of Utah Health, it kind of gives you another idea of what kind of care you're going to get here.

So what about the family who's already home and maybe they're just finally now, after listening to this conversation, putting a name to what happened? Their loved one came back a little different, and they don't know why. What would you want them to know or what could they do at that point?

Dr. Weiss: You've arrived back home. You now recognize that maybe your loved one experienced a little bit of delirium in the hospital. I think there are a couple of really important steps to take.

I think one is now that you've recognized it, understanding that they're at high risk of it happening again and making sure to take the proactive steps that we've talked about, Scot, to prevent it from happening in the future, right?

Next time they need a knee replacement, next time they need to come into the hospital, now you know that they're at very high risk, so we can take proactive steps to prevent that from happening.

And I think one thing that we should talk about in delirium, and we're recognizing more and more, is that the cognitive effects, the changes that you see in your loved one, don't get better overnight. A majority of people leave the hospital still with some symptoms of delirium.

We know that they generally do get better over time. You will see your loved one come back to you, but sometimes we anticipate that people will never quite get back to the way they were.

And so make sure you're following up with your primary care doctor or a geriatrician to address any issues that come up with the kind of lasting cognitive effects that could happen to your loved one after this episode.

Interview: As we wrap this up, tell me about the impact of the HELP program on University of Utah Health as you've seen it. Has it been pretty profound?

Dr. Weiss: It really has, Scot. I was preparing this annual report on kind of just summarizing what we've done in the past calendar year, and I just want to read out some numbers because I was just blown away.

So we touched 965 patients. Our volunteers visited almost 1,000 patients in the hospital this year. That totaled about 4,300 volunteer visits. And I just think that that is such a large number. So many people impacted by these very passionate volunteers that we have coming in the hospital day in and day out. I'm just really proud of being a part of a team like that.