Episode 41: Terminal Agitation
Updated: Mar 5
In this episode of Living With Hospice, we discuss one of the most misunderstood medical conditions that hospice patients face, Terminal Agitation. Also known as End of Life Restlessness, this phenomenon is sometimes difficult for caregivers to understand and process through. Mitch helps us understand what this phase of dying looks like and explains some other conditions that mimic this issue.
When you witness these behaviors, that's the time to call your hospice team for re evaluation. They can determine what's going on. They can tell you what to do to manage these episodes, and to render help in making your loved one more comfortable. "
As caregivers, we experience so many things. There's a zillion things are that are going on and happening around us. Many of the things that happen, happen without a warning. Some are good, like little successes here and there, and some are not so good. In fact, some could actually be scary. Like, our loved one starts cursing and thrashing about an anger and saying hurtful things directed at us. Have you ever witnessed anything like this in your experience as a caregiver?
Well, that's what we're going to talk about today. Hello, by the way, my name is Mitch Ware, welcome to another episode of Living With Hospice. Come on in grab a cup of coffee, let's talk about what I think is one of the most misunderstood medical conditions that some of our loved ones face at the end of life. It's called terminal agitation, also known as end of life, restlessness.
In medicine, like many other industries, I guess, there are several catch all terms like the flu, or a cold, or even Alzheimer's. Each of these are distinct medical conditions that often get blamed for an illness that is not what people claim it to be. For example, Alzheimer's is one of many forms of dementia. The flu and the cold are terms that we use to express certain symptoms, like nasal congestion, or a fever, or it's hard to breathe, or body aches. You know, that sort of thing. When in reality, we don't have the flu. We could have a sinus infection.
A behavior of extreme anger, or extreme restlessness, especially if chronic is not necessarily terminal agitation. And that's what we're talking about today. In some rare occasions, some of these behaviors may need to be treated as an emergency, especially if the patient is acting out in a violent manner. This happens most often, when there is an issue with medication. It can also be a result of something like a tumor or other neurological condition or imbalance. In other words, every time a patient gets aggravated or frustrated, doesn't necessarily mean they're experiencing terminal agitation. It could be, but not necessarily.
Many well intentioned people are very quick to call this behavior, these types of behaviors: "Terminal agitation". The cause of these behaviors can be something as simple as unmanaged pain or anxiety or, or something simple that they just can't do anymore. They wish they could. And they're frustrated because they can't. And they just throw their arms up, they start expressing extreme anxiety.
Another reason and this is all too often, by the way, is an imbalance in medication or a medication issue. In my experience, I think the number one reasons for this type of behavior, especially when things are otherwise going pretty well, is a UTI. That's a urinary tract infection. These are very common, they're very painful, by the way and can cause a great deal of emotional as well as physical discomfort. If your loved one isn't able to speak or speaks very little, well, they are not able to tell you what's really hurting them and what's really going on. And that too, adds to the frustration in the anger.
So what is terminal agitation? Well, it's a condition that does have many of those same behaviors as we previously mentioned, the other restlessness, anger, confusion, even delirium, is basically a condition that occurs near the end of someone's life. Now, mind you, not everyone experiences this condition, but some do. Your loved one may seem confused or agitated, they may seem angry, they may fidget, they may pull it their clothes, or they may just become really withdrawn, just quiet, staring out into space and just no longer engaging. They may act out in anger, like throwing their arms and legs in the air kicking off the blankets. Like I said, before pulling at their clothes, I've seen that or are just screaming and yelling. Unfortunately, they may even say words that are hurtful, and they direct them at you. Now, you shouldn't take this personally, these words are not really meant for you. In fact, when this happens, it's not your loved one saying it. It's the disease in the condition as a result of the disease that is saying this.
When you witness these behaviors, that's the time to call your hospice team for re evaluation. They can determine what's going on. They can tell you what to do to manage these episodes, and to render help in making your loved one more comfortable. Now, if you're like me, you want to know, well, why does my dying loved one experienced this, this close to their passing? I mean, they're in hospice care, their palliative care, and they're at the end of their life, what's going on in their bodies that could cause this to happen? And the answer is there are several potential causes.
A number of changes happen when a person nears death. Body organs begin to shutdown, waste builds up inside our bodies and turns toxic in our system, and that can cause confusion, certainly discomfort, which then results in changes in our behavior. Other causes, and this is really a no no certain order. Opioid toxicity or a high or prolonged opioid administration can lead to a state of sedation or neuro excitation and even a state of frustrated or agitated or restless delirium. Back in the day, we would have called that when a bad trip on drugs, but that's what it is.
Another reason could just be pain. Uncontrolled and severe pain can cause all sorts of behaviors that are negative. You know, from your own life experience how severe pain can cause you to do things, it certainly can cause you to say things you otherwise might not say, Well, this whole pain issue is not acceptable. It should be dealt with before it gets to this point of the journey. Remember, communicating that you're in pain is difficult for someone with some cognitive issues. If they're cognitively impaired, and they can't speak they may result in just basic primal means of communication which is crying out grimacing, flailing of hands or feet, ripping off the blankets, ripping off their clothes or pulling out their clothes and the list goes on and on and on. Just unusual behaviors. And that's how they're speaking out to let you know something is wrong.
Many times a drug interaction is at the core of terminal agitation. Some of the medicines used in palliative care and hospice care, such as hypnotics and anti convulsant may cause this condition or this state of agitation or frustration. Again, if your loved one is on these medicines, and you're noticing strange behaviors, get your hospice team involved as soon as you can. Often times, a fever or sepsis may cause the onset of a state of delirium. This can simply occur with fever, which the experts tell us can reduce cerebral oxidative metabolism, then there's hypercalcemia. This is one of the most common life threatening metabolic disorders in cancer patients.
Hypercalcemia is a condition in which the calcium level in your blood is way above normal. And this can weaken your bones, create kidney stones, and even interfere with how your heart and brain work. All of these things cause pain, they cause frustration, they cause anxiety, and restlessness. So calcium levels should be checked, ask your hospice nurse about an at home test, or they can come and administer the test. But that should be taken care of and monitored closely. There's also raised intracranial pressure that can cause terminal agitation. Brain tumors or cerebral metastases can put pressure on certain portions of the brain, resulting in the perception of pain or anxiety.
And there are other things that have not been defined that remain unknown to practitioners as to why the patient is having these episodes. Like with my dad, there was no pain medication techs, acity. There was no delirium. There was no fever, there was no hypercalcemia although that would be one plausible reason, I guess. Yet, some things are just not explainable by science. And that, my friends is something that we've come to peace with. Some people are just having an anxiety attack about something in their life, something they need to get done, or something they need to get taken care of. And it has nothing to do with the fear of death or their condition.
Okay, so what should I do when my loved one that I'm caring for is demonstrating some of these behaviors? Well, the best way to start to care for your loved one while they're exhibiting these symptoms, is to simply Talk softly, clearly, and calmly to them, no matter what they do or say, remember, don't take any of this stuff personally. Even if they're using your name and calling you out, control your response. Do not get agitated in return. This behavior, it's not your loved one's fault. And I found that a good way to calm them is to redirect their attention or their thoughts to something else. If the person likes a particular song, for example, start to sing it with them, and look them in the eye. Or if they enjoy watching the birds come up to the bird feeder, they're in the window, you might mention, hey, look, the Cardinals are back to see you. Or point out some other birds or squirrels or whatever that are there and redirect their attention. That way, you'll get the idea. We're redirecting their thought process by redirecting what they're focusing on, in hopefully providing something calm, and something that brings them joy to focus on.
So Mitch, who gets terminal agitation and who doesn't? Now there is a $65,000 question. There's no way to tell. It's not something that any one group of people is we're predestined to have than another, and the experts all the studies that have been taken, well, guesses I guess, I should say, somewhere between 20% and 75% of patients at end of life will experience terminal agitation at some level or another.
So yeah, that's a diplomatic way of saying, Nobody really knows. Nobody really knows how many people are going to experience it or have experienced it. Now, you can speak to nurses who deal with dying patients, hospice, nurses, and hospital nurses, and they'll all tell you something different. It's all in, in their own personal experience. Like in my case, even though I'm not a doctor, I'm not a nurse. I'm not a medical practitioner. I'm just a guy that has been there and done that and got the t shirt relative to end of life, and all things hospice. But I have personally witnessed terminal agitation a few times, in all of these years, only a couple of times, but I've heard others in our field, experiencing it more often.
So again, it's anyone's guess how many people will really experience this. I had a patient's daughter, who was very concerned about her mom's change in behavior. It's one of those sudden things she'd been diagnosed a while, I believe she had stage four cancer, she became, well, just one of these people is hyper critical of everything. She got snarky, she even got downright nasty and mean to her daughter. And of course, the daughter eventually was at the ropes end. And she asked us, What do I do?
Well, sadly, this sort of behavior is all too common. And in a nutshell, you got to remember people who are diagnosed with a terminal disease feel like they've lost control of their lives, especially people that are very independent, otherwise, we all know somebody like that. They never asked for help, but they're always the first to help. And it's hard for individuals and personalities like that, to take help. They're used to controlling their world round them.
Many of us, when confronted with this type of prognosis, gravitate to controlling what few things we can. And sadly, that comes in the form of critiquing, or can come in the form of critiquing everything around us, forcing change on things, things that are not necessarily wrong or in need of change. It's done to fulfill that inner need to have some control in their life.
I share with patients families not to take this behavior personally. It's not a personal thing at all, even if it appears to be and quite often it does. It's just the expression of their feelings of losing the ability to have some say, in their situation and in their world. So don't argue, don't fuss. Merely make the changes you know where appropriate and and where you're able to comfort them. This will keep peace and love wins out. Just keep proper perspective. Hang in there. And this too shall pass.
I recall when my father went through this, this was 1984 ish, I think August of 84. He was in the hospital and pretty much on his deathbed and the family was all called in. In our recalls a little before midnight, my two brothers and my mom left the room to get some coffee. We knew that it was going to be a long night. I said, No problem. I'll stay here with dad. Well, they left the room. And after about 30 seconds or so, my dad turned to me and said, Help me up. Help me up. I need to get out of this bed.
And I said, Dad, you need to lay down a rest. He goes, No boy, I need to get up out of this bedroom. I'm going to die.
Now, mind you, by this time in his journey, he couldn't walk. He really couldn't talk. He couldn't sit up. He barely could communicate. But he said those words very clearly, very distinctly helped me get up.
"You got to help me get up or I'm boy, I'm gonna die."
And he started to get out of bed. And I said, "no Dad! You have to stay in bed and rest."
He turned his head and glared at me. I mean, looked right through me and said, "Well, what good are you anyway?"
Boy, that was a real gut punch. And I didn't see it coming. This is before I had any my training I really didn't know. So my first experience with death. At one level I knew this was the disease talking. But it still really hurt. My dad had never talked to me like that. Oh, he told me he'd been disappointed in me. And he was angry at me or whatever over the years, and I usually deserved it. But here he is on his deathbed. He said what good are you anyway? Man that cut me like a knife.
So like I said, that was 1984 and I still remember it as if it was yesterday. When we are on an end of life journey, we will encounter some different behaviors and attitudes from our loved ones. Just the knowledge of a terminal diagnosis is enough to cause most of us they have a change in our emotions, running the gamut from fear to anger. As we proceed down this end of life path we encounter medications and physiological changes. These in conjunction with our emotional state dictate our thoughts and our behaviors.
When there is a sudden change in our loved ones behavior attitude, the hospice team should be notified immediately. They should come out and do a reevaluation many times the cause for this particular change can be determined and remedied.
Well, I hope you found all of this information to be helpful as always, we thank you for listening. We look forward to spending time with you again soon. And if you have any questions or comments, we love to hear them drop us a line at www.livewithhospice.com. We look forward to hearing from you until next time, this is Mitch ware, your host wishing you a blessed day.