Episode Transcript
[00:00:00] Megan Hosey, PhD: we've got a couple of papers that are really interesting, they report on what it looks like to recover from a medical illness in TV and movies.
[00:00:09] We see people wake up, get up, walk away, and they just sort of rebound. And so friends, family, and even if, as we've talked about medical and psychological experts not really sort of appreciating that this isn't a bounce back situation. Physically, mentally, this takes a toll.
[00:00:30] Kirsten Harrell, PsyD: coming home, and I don't think this is uncommon. my family was like, yay, you survived.
[00:00:38] Woohoo.To me, the hard journey was just beginning
[00:00:44] Meghan Beier, PhD (2): Welcome to find empathy, your go-to podcast for insights on medical and health psychology. We explore the mental health impacts and strategies for living well with a serious medical condition, chronic illness and our disability. Whether you have lived experience, support someone who does or are a mental health or medical professional, this podcast is for you.
[00:01:07] Today's episode was prompted by Dr. Kiersten Harrell, a psychologist and fierce advocate, wanting to increase awareness and education on a very important topic called post ICU syndrome. Let's get started.
[00:01:21]
[00:01:21] Meghan Beier, PhD: kirsten, thank you so much, for, wanting to create this project
[00:01:26] about, post ICU syndrome. Can you share just a little bit about yourself, and your background, and then we're going to go into hearing more about your personal story.
[00:01:36] Kirsten Harrell, PsyD: Sure. I am a psychologist, and unfortunately have been not been able to work for a number of years, due to illnesses. but when I was working, I kind of focused on, folks with, physical illnesses and,anxiety and PTSD. Which, interestingly enough, is now all the things I'm dealing with.
[00:02:05] Meghan Beier, PhD: what brought you to working with people with chronic illness?
[00:02:08] Kirsten Harrell, PsyD: I, initially, early on in my life, wanted to be a physician. and then I kind of had a, a change. Um, and thought that I'd rather, kind of work, More with, people who have physical illnesses and help them deal with the emotional and psychological impact of that.
[00:02:28] Meghan Beier, PhD: And your work life became personal. Can you share more about that?
[00:02:35] Kirsten Harrell, PsyD: and unfortunately, it's, it started even before the ICU, with, chronic illnesses that,took me out of work for a bit, and then I was, recovering, and then got sick with the flu. sepsis, ARDS, and, ended up in the ICU on a ventilator for three weeks, and, in the hospital for a total of a month, and that, Really changed me, changed, clearly the trajectory of my life.
[00:03:13] I haven't been able to work at all since then. and it was six years ago and I'm still, dealing with some of the,post intensive care syndrome effects.
[00:03:28] Meghan Beier, PhD: In addition to Kirsten, we have two PICS experts joining the episode. First we have Dr. James Jackson. He's a research professor at Vanderbilt university medical center. He is an internationally recognized expert on the effects of illness, including long COVID, on cognitive and mental health functioning.
[00:03:47] Meghan Beier, PhD (2): He is a licensed psychologist and pioneer in the investigation and treatment of post intensive care syndrome or PICS. He is the co-founder and director of behavioral health at the award-winning ICU recovery center. One of the world's first comprehensive clinical resources devoted to diagnosing and treating survivors of critical illness.
[00:04:09] He serves as the director of long-term outcomes at the critical illness, brain dysfunction and survivorship center, CIBS. The CIBS center is widely recognized as a leader in advancing knowledge, education and models of care for people affected by acute and longterm brain dysfunction following critical illness.
[00:04:31] Dr. Jackson, who goes by Jim defines post ICU syndrome for us.
[00:04:37] James C. Jackson, PsyD: PICS is a, is a term and a construct, that people are referring to a lot more regularly than they did. It wasn't that long ago that you would bring it up with a doctor, a patient would bring it up with a doctor, and they would have no idea, what you're talking about.
[00:04:50] I was recently an expert witness in a case, and, uh, a lawyer actually knew what it was, and, uh, one of the treating physicians of the patient that I had engaged knew what it was. know increasingly what it is. What it is, is, a syndrome that is characterized by mental health concerns or cognitive problems or physical disabilities or some combination of those that have developed after a critical illness.
[00:05:22] some of us think it should be called post critical illness syndrome because it's not necessarily the intensive care itself that is driving these problems, it plays a role, but it's also the critical illness. It's, it's the notion that, you're doing fine, perhaps, before you were critically ill, and you develop brand new problems you didn't have before, or perhaps you had challenges before, but after intensive care, they're meaningfully worse.
[00:05:50] Uh, that. In a nutshell is post intensive care syndrome. Um, looks different in different people. it has a little bit of a different natural history for many people. It has a bit of a chronic flavor. Kirsten's alluded to this. I think it does become a lot like. a chronic illness. It doesn't completely go away.
[00:06:09] It ebbs and it flows. And, uh, one of the great challenges, clinically, of course, is helping people learn to flexibly adjust to what is effectively a new normal. And that's a important clinical challenge, and it's a hard thing.
[00:06:23] Meghan Beier, PhD: can you share a little bit about your background and your experience with post ICU syndrome?
[00:06:30] James C. Jackson, PsyD: I can. it's really interesting. Uh, we had a patient, I could get into the weeds, so I'll try not to do that. But we had a patient that we got to know very long ago. One of the first patients that I had engaged in my research work here at Vanderbilt, and she sent me an email and she said, when you met me, she sent me an email yesterday.
[00:06:49] She said, when you met me, I was 49 and now I'm 71 and I was 34 and now I'm 56. So I've been at this for. 22 years plus and at this is working at the intersection of cognition and mental health in ICU survivors. I came to Vanderbilt, did a residency, didn't have aspirations to be a researcher as such, actually, got a fortune cookie at a Chinese restaurant called August Moon, and, uh, cracked it open and it said, uh, You will prosper in the field of medical research and I thought that is oddly specific.
[00:07:30] I lost the fortune, but I do have a picture of it. And, that sort of empowered me to pursue this path, which is a path of treatment and investigation. If you look at the numbers of people like Kirsten, the numbers of people with post intensive care syndrome, I think it's fair to say that. That number in North America alone every year is in the millions.
[00:07:51] It's a huge number of people and they fly under the radar screen tremendously. I think it's fair to say that there are people with. Lupus and MS and, you know, I can go down the list, heart disease, various kinds of cancer, conditions that in some cases are far less prevalent than post intensive care syndrome, and, they get far more attention.
[00:08:15] Good, good for them, right? We're not trying to take the attention away from people with these problems, but trying to point out that we have a little bit of a marketing problem, we have a bit of a branding problem, people aren't quite as aware as they should be. of both the magnitude of post intensive care syndrome and of the prevalence, it's incredibly prevalent.
[00:08:37] Meghan Beier, PhD: going back to you, Kirsten, I want you to kind of Walk us through your personal story and, and then we'll ask questions along the way.
[00:08:44] Kirsten Harrell, PsyD: Okay. I, I remember on a day I was feeling pretty good. I started coughing.I was up that entire night. literally coughing non stop. I, in the morning, got up and said to my partner, I need to go to urgent care. so we went there and that's the last thing I remember.for a week. I apparently for that week went was going back and forth to, the emergency room and, being sent home.
[00:09:23] I had, like, 104 plus fever. so I think I was just, maybe a little delirious. on the maybe third visit to the E. R. They, sent me from the small community hospital to a little bit of the bigger community hospital. and I was admitted right into I. C. U. I do remember being there and I remember being, them talking to me about being intubated and that was terrifying.
[00:09:56] to me, I didn't really know much about, what that meant to me. It meant, Oh boy, this is maybe the end. having to sign all the papers and, do that was a pretty terrifying experience. Um, they had a guitar player in the ER room that I remember, remember, which was really lovely.
[00:10:17] Um, that's one thing that kind of stuck out.I do not remember a whole lot of my ICU experience, which is fairly typical. I was in a medical coma for most of the time.however, there were some, there was a period in the middle that they brought me out. unfortunately, I aspirated And then got worse.
[00:10:43] And so went back into the medical coma. The time in the middle, when I was awake, it was a little more aware. and I could communicate by writing and,was a little out of it, but,knew what was going on. By the time I woke up. The next time when I was extubated, I, I was completely out of it and having delirium, the ICU delirium and hallucinations, for me were some of the, most traumatic parts of the, ICU stay, just absolutely terrifying, experiences that felt so real.
[00:11:28] To me,and as from the rest of the people I know with PICS, who experienced delirium, they all say the same thing, just a very sticky, experience. And, to me, it felt like a real lived trauma. during one, I felt like I had been kidnapped and was in an experimental hospital away from my family for the whole time and I couldn't figure out how to get out.
[00:11:57] I had another one where, I thought there was some kind of strange evil magic people trying to get to me. very scary experiences. some of the biggest challenge for me, post ICU is dealing with the,impact of the ICU delirium, lots of other traumatic feelings in the ICU. Not being able to communicate was for me, probably one of the hardest things, and most frustrating. And. as time progressed, I, you know, initially I could write, then it got to the point that,I would try really hard to write. It was so difficult.
[00:12:45] It felt to me like a,climbing a mountain to write a couple words or sentence, and I would show it to my family or staff, and they couldn't read it. And I remember feeling so angry at them, Are you kidding me? I just,completed this Herculean challenge of writing it, and you can't read it?
[00:13:14] Can't you just, try harder? After I got out and I looked at it, I realized, And there was no way to read it. It was basically gibberish. but in my mind, I just felt like, well, they're just not trying. And I just tried.so that was horrible for me. Feeling so completely helpless. I can't move, can't breathe on my own.
[00:13:42] I can't communicate,just completely at the mercy of the people around me and that. I will tell you is a very, very scary place to be.
[00:13:56] Meghan Beier, PhD: Dr. Jackson jumps in here with a question for Kirsten.
[00:14:00] James C. Jackson, PsyD: Kirsten, I don't know if you agree with the premise of my question, but the premise of my question is that,the laity, lay people, and also I think a fair number of mental health professionals still have some pretty, uh, about what constitutes trauma and they associate trauma often with combat and sexual assault quite rightly.
[00:14:24] But I think many of them don't really have space necessarily for the idea that a critical illness would be a trauma. First would you agree with that and second what would you say to someone who would say Well, that, that delirium, those experiences weren't real. So, uh, you know, how could that be traumatic?
[00:14:47] what, what would you say about that? And what would you say to people who would say, I'm not sure this is a trauma.
[00:14:54] Kirsten Harrell, PsyD: Yeah, that's, Actually, one of the biggest motivating pieces for me to do this is that, I think the, as you said, the lay population, but also mental health and, medical professionals don't necessarily understand that piece and how, those Experiences, those hallucinations are just as clear and crisp in my memory, actually far more clear and crisp than any of the other memories from the ICU.
[00:15:36] And to me, they truly feel like lived experiences. And then I will also say that it is. Confusing, even to those of us who experienced it, because you come out and you think, okay, I know that didn't happen. And yet I'm having flashbacks to it.intrusive memories, you know, all the signs of trauma and PTSD.
[00:16:07] And it, it was a little difficult for me, even as a psychologist to to accept that and understand that. I think as your body is there in an absolute fight, For your life. while you're experiencing these things, I think that helps contribute to it being experienced as a trauma that is as valid as any other trauma and needs.
[00:16:39] Um,it needs a little bit of a special, nuanced approach, I think, because, people do. understand if they've been through, war or a sexual assault or something like that, that they've experienced trauma. But there are a lot of patients who come out and they themselves don't understand why this is so impactful to them.
[00:17:04] So having a mental health provider who understands that and can help,help them, Help them understand that, yeah, it was not a real thing. You now know it's not a real thing, but at the time, your brain and your body didn't understand that it wasn't real.
[00:17:23] James C. Jackson, PsyD: I would imagine, too, that, you're a psychologist who has an understanding of what trauma is and what these intrusive thoughts are and sort of a framework to put some of this in, which doesn't necessarily make it less impactful, but I could imagine somebody without that background might experience it in a, in a maybe more intense way.
[00:17:46] Meghan Beier, PhD (2): I don't know. Could you share your thoughts about that? Like your experience versus somebody who might not have that framework to put it in?
[00:17:53] Kirsten Harrell, PsyD: and my experience, in talking with other,PICS survivors, I think I did have an, a little bit of a, easier, I guess, time accepting. Oh, okay. Yeah. And finally when I recognized it, but it took me a bit even and, recognized, okay, this is PTSD, but I know that there are plenty of people who don't recognize that. And then they think, Oh my gosh, something is really wrong with me. And, quote unquote, I'm crazy. and just truly don't understand that it could be PTSD because they think, it wasn't, I wasn't in war. I wasn't a sexual assault. there must just be really something wrong with me versus I have PTSD.
[00:18:45] Meghan Beier, PhD (2): Here, Dr. Megan Hosey joins the conversation. Dr. Hosey a psychologist that practices in the medical ICU is an assistant professor at Johns Hopkins in the department of physical medicine and rehabilitation. She specializes in the psychological adaptation to critical illness, critical illness survivorship, and health psychology interventions. Dr.
[00:19:07] Hosey also participates in the outcomes after critical illness and surgery research group. Here, she shares a little bit more about the symptoms common to post ICU syndrome.
[00:19:20] Megan Hosey, PhD: So I think that Kirsten and Jim have done a wonderful job fleshing out, what PICS is. Um, the term came about in about 2012 when many of our ICU survivors, we've got a lot of folks who previously would not have survived surviving Now because of the advancements in critical care, and these folks use their voices to say things are not the way they were before.
[00:19:48] They describe the symptoms that Jim and Kirsten have been describing and so a post intensive care syndrome came about as really like, Jim was saying a marketing tool. So it's not a specific diagnosis that you'll find in the ICD10. it's not, Something that somebody will write in a medical chart, and the reason is because again, that's more for marketing and because we also want to acknowledge what a diverse array of outcomes people can have when they have post intensive care syndrome.
[00:20:19] Kirsten's done a gorgeous job of talking about PTSD symptoms, Jim highlighted how, criterion A, which is that you have to have had threat of death or harm. and Kirsten story is so important because there's 2 components of this for our ICU patients, right? She told you stories about how she was intubated and could not communicate when she was experiencing severe symptoms like breathlessness, perhaps, or, it's really hard to describe how hard it is to lie in bed not being able to do anything for yourself, particularly at night, particularly when you're confused about where you are or when you are.
[00:20:59] So that inability to communicate in a life threatening situation Could potentially, we could debate about whether that meets a criterion A. So there's all of that, you're fighting literally to stay alive. And then B is these delusion experiences. Again, I just want to normalize and validate the types of things Kirsten was describing.
[00:21:24] You know, the hallmark feature of inattention, or of delirium is inattention. and it happens in 80 percent of people. Certainly people who are older or people who have had a chronic illness might be more at risk for ICU delirium, but we see this in 26 year old marathoners. This could happen to about 80 percent of people who are mechanically ventilated. So we don't want people to think that this is rare or uncommon. And it's also very common for people to describe things like Kirsten described that, hospitals become torture chambers, experiment, organizations.Routine peri care, so cleaning people up, can turn into sexual assaults. Last week, I had a woman who's now 30, but when she was hospitalized at 27 thought that she was having toy planes inserted into her arms. And so when she returned to the ICU to sort of get a sense of what she had, she realized it was butterfly needles that had been inserted, but her brain in a place where it could not attend to everything that was going on due to illness, due to medication side effect, due to being in a strange environment, thought that it was a toy plane being put in her arm.
[00:22:42] all of these are very common types of hallucinations and delusions and again can happen in anybody. So what's the long term outcome of that? We certainly we have PTSD. anxiety, is the, the most commonly reported even out to 5 years symptom. And for that, that can manifest is, somatic hyper vigilance or just Waiting to see what next happens to your body and not really having such an easy time telling what's a normal symptom or an uncomfortable symptom versus what's a harmful one. anxiety can also look like new onset panic. it can look like,catastrophic worry about what happens to me next.
[00:23:25] Depression is the second most common. and also, it's not uncommon for all of these symptoms to overlap. depression, often people reporting sense of helplessness, hopelessness, worry about not getting back to the life they had before, describing difficulty finding meaning in life after they've been discharged.
[00:23:48] And,certainly a lot of folks describe irritability with their, the lack of function that they had before. we've got a couple of papers that are really interesting, they report on what it looks like to recover from a medical illness in TV and movies.
[00:24:04] We see people wake up, get up, walk away, and they just sort of rebound. And so friends, family, and even if, as we've talked about medical and psychological experts not really sort of appreciating that this isn't a bounce back situation. Physically, mentally, this takes a toll. So those are a lot of the mental health symptoms.
[00:24:28] And then certainly physically, we know people can take a while to recover their musculoskeletal function. We know people have ongoing sleep disruption, chronic pain, and fatigue that can be fairly disabling as well.
[00:24:44] Meghan Beier, PhD: We turned back to Kirsten. She reacts to some of the facts that Dr. Hosey just shared.
[00:24:50] Kirsten Harrell, PsyD: I was relating so much to what Megan was saying. and one of the things, that kind of stuck out to me that, I have thought about maybe because of my background as a psychologist, that is different. in, ICU survivorship trauma versus, some other types of trauma is that the threat came from inside, not outside.
[00:25:22] And that can make it really difficult, when you do feel symptoms and I, I have an immune deficiency. So for me,any, any new illness, initially really caused, a lot of panic for me of, oh my gosh, here we go again. and, you know, it's, you don't trust your body necessarily or your mind, because of the delirium.
[00:25:54] So it's this very odd thing that, You know, that trauma all came from inside yourself, and you can't get away from that. coming home, and I don't think this is uncommon. there was definitely still some confusion, and my family was like, yay, you survived.
[00:26:17] Woohoo.To me, the hard journey was just beginning, trying to recover physically, the first year was Really focused on the physical recovery and trying to regain, strength and stamina, I could not, even get up from my couch without help. I couldn't, um, took, I don't know, over a month before physical therapy released me to walk with my walker by myself, because I would fall backwards. Um,so much was focused on the physical that I did not begin to really recognize and understand some of the cognitive and psychological impacts until after that first year. and initially I was thinking most of it was Cognitive, and I could tell, and again, because of my background, there was mostly executive functioning type of things, that were problematic, and, I had a very low frustration tolerance, and that's when I was really noticing something was wrong, because, I remember one day I burned my toast, and I got so upset, I threw the toast.
[00:27:33] And I was like, Whoa, where did that come from? That is not me. and I was like, I think there's something going on here. And I knew nothing about PICS at the time. so I, I asked my PCP and my neurologist, neither of them had any idea, just said, yeah, maybe still just, dealing with some, cognitive issues from the ICU, but really no help.
[00:28:07] Um, so I had to start. Kind of looking things up myself, and found pics and I was like, oh, okay, so other people do this.and that began to really help me get a framework for what was happening, which did help because I did what I think a lot of people do. And I'm like, Oh, my goodness, this is something is just weird with me.
[00:28:35] And,I remember early on, after that first year, we, was going to go, visit family who just had a baby and I freaked out completely had a panic attack. And About leaving my home and that was absolutely when I was like, okay, I clearly am having some PTSD here because I am just panicked to leave, and tried to seek help.
[00:29:04] With, therapy and, it, the first several therapists were actually unhelpful, unfortunately because they had no idea and, really struggled with what it looks like to have that intersection of PTSD and mild cognitive impairment. I think that really throws some, therapists who don't have any, background or understanding of that, and they don't know what that means or, you can get misdiagnosed and, just not helpful in the treatment.
[00:29:46] so it took me five therapists before I found someone who, and she didn't know about PICS, but we had enough trauma, experience. And willingness to learn, that it worked out.that's a piece that has motivated me because I know a lot of people go to therapy, they have somebody who doesn't understand and as, we've all said, it's not an ICD code.
[00:30:20] It's not in the DSM. It's not,diagnosable and they hear, it's not real. And so then they think, Oh, see, I don't have, it's not real. This person doesn't believe me. Why should I keep going? and that. Is, every time I hear that from, PIC survivors, it just hurts me in the, in my soul because as a psychologist, I'm like, Oh God, that's just, that is terrible
[00:30:53] Meghan Beier, PhD (2): And harmful in
[00:30:54] Kirsten Harrell, PsyD: and harmful.
[00:30:56] Yes.
[00:30:57] Meghan Beier, PhD (2): Jim, I'd love for you to jump in, and just share any comments you have from what Kirsten has shared as well as what would a good treatment look like?
[00:31:06] James C. Jackson, PsyD: Kirsten said so much and a lot of it was really astute, one of the first things she said that stood out to me, she talked about,the trauma. And again, I, I would note that as Megan said, this isn't all PTSD, right? This is PTSD and anxiety and depression in the mental health arena.
[00:31:23] It's executive dysfunction. Cognitive problems that mimic a brain injury in the cognitive arena, it's physical disability. So it's not just trauma, but, what, what, Kirsten mentioned reminded me of, Don Edmondson at Columbia Medical School, who has, developed this model of, PTSD, medical PTSD, if you will, and he points out in this somatic model that trauma for people who are medically traumatized often resides in the body.
[00:31:57] It's not external as Chris, as Kirsten noted, it's internal. And he notes that, most trauma is backwards looking something happened in the future or in the past rather, but if you have. a heart attack and you're carrying your heart around with you. You could have another heart attack, right? If you have a immune deficiency and that lands you in the ICU, that could happen again.
[00:32:18] So not only is this trauma residing in you, it's not behind you. It's also in front of you. So I think that makes it uniquely challenging, as do the cognitive problems that are so common, that, that happen in, perhaps 30 percent of people or so. So when we see that overlay a lot, where people's ability to be as insightful as they were, to make the connections as adroitly as they did, to be as cognitively flexible as they might have been, they're not, right? Because they're cognitively impaired now. so they're trying hard to address these issues, in some cases, with one hand tied behind their back, because they've got cognitive challenges.
[00:32:59] And I think, I think Kirsten would agree. there are a lot of therapies, It seems to me that work well with, ICU survivors with PICS. If I had to write the name of one on the whiteboard behind me and draw a circle around it in red, it would really be acceptance and commitment therapy. You know, that's not the only therapy that, that you can use.
[00:33:18] Certainly for PTSD there are, any range of things. I like the exposure therapies a lot. we have a simulation lab here at Vanderbilt, where I imagine we could take patients to, uh, you know, that sort of opportunity exists to bring people back to the ICU, to look at the diaries that they, wrote, it's exposure therapy.
[00:33:42] But what I love about acceptance commitment therapy for these patients is. The acceptance parts more complicated than that. But, this idea that I've got brand new challenges and I'm not who I was and I don't love who I am right now. But can I find a way to accept it? Can I find a way to even embrace it?
[00:34:06] can I live in accord with my values and find a way to live a meaningful life? That, I think, is the key and the ticket. Again, it's not so simple, right? It happens over years. But, our patients who do better rather than worse are patients who find a way to make some meaning out of their experience.
[00:34:27] For Kirsten, and I know Kirsten because she's in a support group that I have led here at Vanderbilt, I think she's finding some meaning, and I don't want to speak for her, by, by wearing this, Patient advocate hat and doing it beautifully well, right. She's finding some meaning. And I think that's the, that's the opportunity for our patients.
[00:34:48] And we try to lay the gauntlet down with them and say, how can we help you find some meaning in this? You can find some meaning in this. Doesn't make it perfect, but it makes it better. I think the other thing that's really important here. And again, Kirsten's in a support group is so often with pics.
[00:35:05] There's this profound isolation, right? And it's born out of. Man, you weren't in the ICU. You didn't have these delusions that I had. You don't understand my story, so I'm not going to tell it. And isolation is really harmful, right? And I think, when our patients are in isolation as opposed to in a healing community, they struggle more.
[00:35:27] And when they are joined with other people in community, they do better, you know, not surprisingly. So I think the onus is on us. To try to figure out how to engage our patients in community. To try to find ways to set them up for success in building connections with other people that will help facilitate their healing.
[00:35:51] Meghan Beier, PhD (2): Thank you. That was a lot of really helpful information. as you were talking, I had this thought of, I was never trauma trained. But I have background in CBT and ACT And I had this initial reaction of should I be getting trained in certain types of trauma interventions, if I were to work with somebody that had PICS?
[00:36:10] Kirsten Harrell, PsyD: And so, uh, I wonder if other people who are listening to this might have a similar kind of reaction, especially, Kirsten, as you shared that the therapist that you ultimately landed with did have that background. I think it's important to at least be trauma informed, and have some understanding of that. however, I will say,the first few therapists that I tried did have some, but their background was more in like EMDR, which for me, just was not helpful, far too intense, far too, fast and,made me worse and they weren't willing to, have some flexibility to understand that was not helpful for me.
[00:37:01] and again, that mixed with the idea that they had no, no understanding of the mixture between the cognitive impairment. And the emotional health issues. and,I've had many people all along the way say, you seem fine. I don't see any cognitive problems, which is, again, something that's very harmful.
[00:37:28] You may not necessarily see them all the time because they're, they can be subtle. Sometimes they're not. And when it gets all, when I get really triggered and the cognitive impairment gets worse, it can look like a mess. but other times it's very subtle and I can function. as I'm talking here, but I cannot sustain it.
[00:37:49] I cannot sustain the cognitive functioning, for long. like after this, I will be wiped out. and but they, but people don't see that. So they don't understand. Oh yeah, there really is an issue there.
[00:38:07] Meghan Beier, PhD: I think Kirsten made a really great point, which was, she saw these providers who maybe were, beautifully well trained in EMDR for, for all I know, and yet, it wasn't effective. And,I think, I'm an advocate of, empirically validated therapies and using them the right way.
[00:38:24] James C. Jackson, PsyD: Certainly. And, I also reject the sort of reflexive sort of simplistic, Hey, let's just give her a little EMDR and she'll be fine. Right. Let's just give her, you know, however many sessions we're going to give her and we'll send her home. She'll be fine. I think, that, the challenges that, that ICU survivors have are, Encapsulated, right?
[00:38:46] in reside in this broader experience. It's really complicated. so I do think you need to be thoughtful and, know your way and be competent.in the treatment of trauma, but, I think if that's where you stop, not sure that, you're going to serve your patients that well, I think, a lot of good treatment to me with our, with our ICU survivors is,You know, it's basic.
[00:39:13] If you remember, there were books that were popular for a while, everything I needed to know about the world I learned in kindergarten, I think was the title, maybe something like that. So the,the rapport building, Hey, Kirsten, I get you, I'm not going to minimize this. This is really difficult, right?
[00:39:30] It must be really hard to have your life.and what does this mean to you and how can I walk through this with you and how can I invite you to use your resources, to recognize that you can do really hard things, those sorts of emphases, I think, are hugely helpful in addition to the trauma because, at least in my experience.
[00:39:53] it is a little unusual that we find someone with a neatly delineated case of PTSD after the ICU that has real clear edges, right? I mean, it's, it's often a package of things and I think it prevents,prevents a simple approach to treatment. Megan, what do you, Megan Hosey, what do you think about that?
[00:40:14] Meghan Beier, PhD:
[00:40:15] Megan Hosey, PhD: I would, I would 100 percent agree. I think what Jim and both Jim and Kirsten are also alluding to is we don't have a set of literature about critical illness, survivorship, or a lot of treatment, specified for people who've experienced medical trauma. And so I think what we know is that there are like baskets of things that we can pull from that would be effective, andnot a lot of it's been tested. I agree with Jim. I think starting with your basic skills is what's most important.validation, normalizing the commonness of a lot of these experiences, exploring, like Jim was saying, maybe starting from an act perspective where you're looking at purpose, values, things the person,Think are important in themselves, and then working through,some of the triggers that we know can prevent full engagement in those things.
[00:41:16] And that can look like trauma treatment that can look like,subjective units of distress for people who are familiar with that concept from CBT. it just start where. You are and build,I think that's, part of the work that we're trying to work toward in the ICU. So, um.
[00:41:39] we're moving towards a humanization of the ICU environments, which means how do we slow down, learn who the person is, who they were before they came into the ICU and start to incorporate that into their ICU experience, Particularly because we don't want to keep telling people they should wait to be who you are until later, wait to be, wait to be doing things until you're better, because there's no capstone for that.
[00:42:07] And also some of the humanized or, or, like, some of the incredible work that people at Vanderbilt, like Jim and Wes Ely have been doing, just the basics of, A, B, C, D, E, F bundle. So these are things like incorporating family regularly. making sure people get opportunities to be awake and alert and participating.
[00:42:27] these are really basic things that we think could change the course of. Of critical care. and so there's a lot of people really invested it starting early at making sure that we're centering the person and hoping that maybe that can mitigate some of these longer term effects.
[00:42:45] James C. Jackson, PsyD: I'd mentioned one, one quick comment. I had a patient it's been a year or two ago now, and he came to see us at the I. C. U. Recovery Center and he had been in a, I. C. U. Diary program at Vanderbilt. And, Megan's very familiar with those because they use them at. Johns Hopkins, and basically a nurse typically writes down various experiences that a patient is having contemporaneously and a patient can look at them later and often these ICU diaries become quite dear.
[00:43:15] and that was true with this patient. He had this ICU diary and when I came to see him, he said that he carried it around everywhere he went in a bag. And he had a. And like a workout bag that you'd put in a locker room and he carried this little diary everywhere with him. And, even though he carried it with him, he never opened it.
[00:43:33] And, and didn't want to open it. but felt he should open it. And, uh, you know, our task therapeutically was, okay, you know, let's get it out of the bag, right? Okay, we're not going to read it today, but let's just acknowledge it, hold it in your hands, let's, hold it in your hands. Put it on the nightstand next to your bed, right?
[00:43:54] and then, you know, a few sessions later, let's actually open it right. And now let's actually start reading it. And we did that. And, and it was quite transformative and it was impactful, right. And it was, it was helping someone in a structured therapeutic way, lean into these fears.
[00:44:13] realize that, they didn't need to shut him down. Realize that he had more agency than he thought. And that exposure exercise, if you want to call it that, became really transformative. So I think opportunities are there if we look for them. And hopefully one of the goals of this, one of the, one of the effects of this.
[00:44:38] lovely podcast and really one of the things that Kirsten hopefully will accomplish as she continues to educate and educate and educate Is just to put this on the radar of psychologists because it's frankly not often on the radar, right? It's on our radar, but it's not on the radar of many of our colleagues or our physician colleagues.
[00:44:55] So, you know, my goal isif people could just start asking questions about this of their patients, I think that'd be a great place to start.
[00:45:06] and Kirsten. We're, we're so proud of you at Vanderbilt. We've watched you, Watched you grow and lean into hard things and we watched you, transform into a leader as you've impacted the lives of dozens of people in this beautiful support group that you're part of and we're really grateful for you. So well done.
[00:45:24] Kirsten Harrell, PsyD: Thank you. Thank you.
[00:45:25] And if I hope you could allow me just to back up
[00:45:33] from that just for a moment to address a little bit of something that Jim said about how the trauma can be Go forward as well. I was making progress because my ICU was 2018. and then when COVID hit, I went into a mental health crisis, because the,respiratory virus for me because of my immune deficiency, was like, worst nightmare, possible. And so seeing all the coverage, and hearing the words and all that, it was just like living in, constant triggering state, that, really just spun me, into a pretty, bad and dark place, with anxiety and fear and depression. And I kept calling it, I would ping pong between the trauma vortex and what I called pit of despair, where,I would just be, triggered and having my own flashbacks to ICU. And then I would, go into kind of a depression and the despair. and, to me that felt as I was sinking in it, it was like a dark fog. And initially I could say, with my own background and skills, okay, that's depression talking, those dark thoughts. Those aren't real. It's depression, but then it was like the fog just would completely envelop my brain. And suddenly, I believed those dark thoughts and I did have suicidal ideation. And,it was pretty intense. certainly in the beginning of COVID.
[00:47:21] But still, medical procedures and all of that are very, difficult for me now, and they are for many, people with PICS. Um, you know, having to go back into a hospital or any kind of medical procedure is very anxiety provoking. So I just wanted to throw that piece in there.
[00:47:41] As far as the work with my therapist, I think a little bit that like Jim has alluded to, validating and understanding that yes, your cognitive impairment is real.
[00:47:57] I don't always see it. This is how her, she would frame it. but I believe you that it's there. And when I do see it,combined with,the anxiety, it would be like, again, my description was I would have a thought and it felt like somebody took all the words and just, mixed them all up.
[00:48:22] And I'd have to spend time trying to Sort them back out and put them in, the right order and then figure out how to get those words out.and it would,first really freak me out of like, why can't I just talk and, her patience was really key. Of just saying, it's okay. We get all the time, just take your time,you'll get it. and being sensitive to the idea that, sometimes I might not remember or understand. A session and we'll, she'll help me repeat that or go over that or, send me, text of some important components, that helps me be able to hold on to it and remember it.
[00:49:16] she's really learned that kind of dance of helping that. helping me with that, conjunction between the cognitive, impairment and the anxiety, the PTSD, the depression, that has felt very safe for me and knowing that she understands, she validates it and is willing to be patient enough to help me,sort it out and.
[00:49:48] help me find a way to, as Jim said, accept where I am, accept the new me, in the support group that we talk about, we all, one of the members likes to say, Kirsten 2. 0, we were, we're not the same as we were before, but we're, we can accept our new version, find out how this new version works and find ways to accept it.
[00:50:15] Meghan Beier, PhD: Megan, you started to talk about, humanizing the ICU. And so we heard about, ICU diaries. So I wondered if you could say a few more sentences about that. And then any other strategies that you'd like to see in the ICU that might help people like Kirsten, mitigate some of these symptoms or at least reduce them.
[00:50:36] Megan Hosey, PhD: Yeah,like the, I think the 1st thing you mentioned was I see you diary. So really briefly, and I see you diary. As Jim mentioned is a set of notes that the bedside providers, like a nurse or even family members write, Ideally, on a daily basis that might include something like, here's what happened medically today. Here's who visited you today. and here's where you look like in your recovery.
[00:51:05] The I've even had patients start or family members start to take pictures that they would incorporate into the diary. The rationale behind that, as Kirsten mentioned, people lose a lot of time that they just don't remember.
[00:51:23] And then in times where they're delirious, this might be Become times where things become delusional or people have hallucinations and so the idea is that on the outside, when the patient gets home and when they say they're ready, that's a key thing when they say they're ready. they can look through the diary to start to put the pieces back together about what was happening to them during this incredibly vulnerable time.
[00:51:54] Some of the benefits patients in addition to what Kirsten talked about in, in terms of piecing stuff together. Patients have learned that they weren't alone for extended periods of time where, family actually was visiting, but maybe the patient's cognitive status was just not letting them register that, they, medical interventions make it clear, the understanding that, oh, this is the day I got a catheter, or, oh, this is the day I got a CT scan, so I wasn't sexually assaulted that day.
[00:52:28] or I wasn't put into an oven, for example, that day. these are the things that can help people put things back together. The reason I say folks should be ready for it when they open it is just because, if people do have PTSD symptoms, we know they can tend to get worse before they get better.
[00:52:47] And patients tend to know when they're in a stable state or when they're ready to receive this type of new information. and so we just, we say like that. Don't force them into opening it. just wait until they feel like they have the resources to do So that's ICU diary.any other things about that, Kirsten, that you, that I should have mentioned or other questions about ICU diary?
[00:53:12] Kirsten Harrell, PsyD: I did not have one. I, what I know about them, I think that would be so helpful, to, because it is so disorienting and upsetting to have chunks of time you just can't remember, or then the, the delusional pieces and,I've been able with my therapist to piece some things together of I think, a CT scan, the red light.
[00:53:40] that's there like a laser, was incorporated into one of my, delusions that I thought I was being attacked by lasers. Um,those things I think can help and then that takes a little bit of the Um, the trauma out of that when you can start to go, okay, I see where that came from. and yeah, that was not, I knew it wasn't real, but it then helps an understanding of why did I have that?
[00:54:14] So those diaries I think can be very, very important. And also, I'm sorry, to say, but the piece that my therapist and I have found is that We have to gently probe some of the memories I do have, because there were things that I didn't recognize, I remembered, but didn't recognize how it layered into the trauma for me.
[00:54:39] I, when I got a PICC line, which, a standard, procedure, but, having the blue sterile, shield over my face and having to lay flat when that made me cough. and I couldn't cough during the procedure and, I felt like I was suffocating under the blue tarp. I didn't recognize as it's, oh my gosh, yeah, that kind of layered into the trauma for me.
[00:55:08] but I wouldn't have recognized that had we not just really slowly and gently gone through, that. Those kind of things would be in an ICU diary, I would assume, and could help with that.
[00:55:24] Meghan Beier, PhD: I wanted to ask each of you if there are topics that you feel like we haven't covered that would be really important for anybody who's listening to hear and learn about.
[00:55:35] Megan, I'll start with you. Is there anything else that you think from either an inpatient or an outpatient provider perspective that you think we haven't covered that would be really helpful for listeners to hear and understand?
[00:55:49] Megan Hosey, PhD: I think just in speaking to, mental health professionals, In the inpatient space, I think one of the key phrases Kirsten mentioned was trauma informed. I see hospitals really trying to figure out what that means and how to institute that. I think I would love to see policy and additional training efforts that help embed trained mental health professionals more deeply in some of these spaces, not only to work with the patients and the families to try to protect them from some of this on the outside, but also to partner with our medical colleagues to sort of keep figuring out what that trauma informed environment looks like. There are mind blowing basics that you as an everyday lay person, like anybody, would think, oh, that's sort of like basic, but when you get into the day to day as a medical provider, these things, it's sort of like walking around in your house, right?
[00:56:52] Like you just forget and lose sense of that. So when I'm, what I'm speaking to is, for example, always. talking as though the patient is there in the room with you and can hear you no matter how sedated they are. we know patients hear, and unfortunately might partially hear and confuse bits and pieces of what gets said along the way.
[00:57:12] incorporating family, visiting hours that are non restricted are actually just starting to come about and like new within the last five to ten years, which is astonishing to me. basic things like Telling the patient what you're going to do before you do it, and then reminding them as you go along again, this procedure that they've done thousands of times is might be the first time that this patient has had this done.
[00:57:39] and so those kind of slow explanations and warnings about what's coming can be really helpful, especially if people have experienced trauma before,I don't know, maybe Kirsten has other insights about things that can be, that, that can be reminders and taught to our bedside clinicians to sort of reduce the amount of trauma that patients might, experience, while they're in the ICU.
[00:58:05] Kirsten Harrell, PsyD: Okay. I think that is so important. And like I said, just some of those routine procedures that, like you said, is just, it's just an everyday thing for the provider. but to recognize that for a particular person that might,be traumatic. there may have been a way to do the PICC line where,I wasn't completely, covered on my face or to,talk me through that in a different way.
[00:58:37] I had a time when the ventilator. broke, and they had to, use the, I don't remember, I don't know the name of the thing, but the blue bag, and yeah, bagged me by hand, and talking me through that would have been very helpful because that is a terrifying thing. Thing to be aware of that. Oh, my gosh.
[00:59:00] My life literally right now is depending on this person doing this. but, I know they were focused on their job. so I understand there's times it probably can't happen. But,just having more understanding that the things that happen every day in an I. C. U. Can, be experienced in a way that can layer on trauma, I think is really important.
[00:59:30] Meghan Beier, PhD: and Kirsten, are there things that you feel like, we haven't talked about that you really want people to know and understand?
[00:59:38] Kirsten Harrell, PsyD: I think a couple of things, one is the, it's very common for those of us who've been in the ICU to, feel guilt. For, two parts, what we put our family through during the ICU stay, even though, clearly wasn't our fault. But we know that it was very tough on them. And then the continued. amount of support that we need, for some of us, for me, six years out still,and feel guilty and, like a burden at times. So we have to work through that, and work through that with family. thankfully, many of us have family that are absolutely, wonderful and don't feel that.
[01:00:25] There are some folks who, lose, lose that support because of that. And so that's important for, I think mental health providers to understand, and where support groups can come in to play,the support group that, Vanderbilt that I'm in. We're family. it is a, it's truly a family.
[01:00:47] We would all do anything, for each other. And that is,that has been a huge piece for me. just knowing, A, I'm not alone and B, I have these people who completely understand and I can say anything, I can ask for help because,they're, I've lost friends who get tired of,Dealing with that I'm I'm not the same. I can't do all the same things. those pieces, I think, are also important to understand and to help, peopledeal with afterwards.
[01:01:28] Meghan Beier, PhD (2): Kirsten's final w ords, remind us that the lasting effects of critical illness and post ICU syndrome can have a profound impact on the person living with this condition. But also on family, friends and loved ones. And bi-directionally their misunderstanding or inability to provide the care needed or desired can further impact the individual living with pics. Kirsten's advocacy reminds us that education on this important topic is needed for all involved. Medical providers so they can better understand this complex constellation of chronic symptoms. Mental health professionals so that they can provide much needed support. The people living with, or at risk for pics so they can have their own framework in which to better understand and make sense of their ongoing symptoms. As Kirsten said life 2.0. And care partners and supporters. I hope you enjoyed this episode and learned as much as I did about this important topic that impacts so many people, and yet still seems to be unknown or misunderstood. If you found this episode valuable, please feel free to share.. Thank you so much for listening.
[01:02:41] Conclusion
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[01:03:33] Please seek the guidance of your doctor or mental health professional. For any questions you might have regarding your own health or medical condition. Thank you so much for listening and we look forward to you joining us in the next episode.
