Morning everyone, welcome. It's 8.31, so we're gonna get started. I'm Carla Steven. I'm a pulmonary critical care doctor at Vanderbilt and it's my absolute pleasure to be here with you today and with this fine panel of folks, we're gonna talk about preventing post ICU syndrome with some focus on families and caregivers. So we'll go ahead and get started. Good morning, thank you for attending the session. I'll be talking about preventing and understanding post-intensive care syndrome starting from day one in the ICU. I am Ahad Kubbara, assistant professor at the University of Minnesota, Pulmonary and Critical Care, most of the associate program director for Pulmonary and Critical Care Fellowship. The learning objectives for this small talk is to understand where's the literature at currently with PECS. Also, what is the evidence behind reducing the incidence of PECS and what tools we have or methods to prevent it or reduce it from happening to our patients. So this term was introduced back in 2010 by the Society of Critical Care Medicine and a definition was made. As of today, the definition has not changed and basically it states that it's a new onset or worsening of impairments in physical, cognitive and or mental health that arose after the ICU stay and they are not secondary to a primary CNS insult such as stroke, intracranial hemorrhage or traumatic brain injury. Remember, this is not a medical diagnosis. There is no ICD-10 for PECS, but it's mainly a principle to raise awareness for ICU healthcare workers and healthcare providers. So how common is this syndrome? There was a Dutch study back in 2021 published where they retrospectively looked at 2,300 patients who either had urgent surgery, elective surgery or they were medical ICU patients. They were all classified as critically ill patients. The patients who were needing urgent surgery as you would expect were at highest risk or they reported PECS symptoms the most at the follow-up when they were looking at the patients at one year. On average across all groups, fatigue was the most common symptom at 30% and depression was reported at 13%. Now remember, these symptoms obviously are common in the general population, but what we're referring here to that they basically started after that ICU stay or the patient had these symptoms and they worsened following the ICU stay. Another study basically that looked retrospectively at ALTO study, which is the ARDS Network Long-Term Outcome Study, looking at 711 patients and published in 2020, fatigue was reported up to 66% in these patients at one year. In 2018, finally, when we're starting to learn more about this and there's more awareness among researchers and investigators, prospective studies starting to show up. So there was a prospective study looking at 406 ICU patients, multi-central in the United States, and at one year, 56% of patients reported at least one impairment among the PECS impairments that we mentioned. In Japan, there was another prospective multi-central study looking at 96 patients after screening and they reported approximately 30% of any impairment will show at six months in their patients. They also had an interesting finding that a lower education level increased the risk of PECS with an odds ratio of four, but unfortunately, the sample, in my opinion, was a small sample. However, this is also informative in terms of splitting the patients in different impairment categories with PECS. You can see the central area, the gray one, that's where patients are reporting overlap among all three impairments, and that's only at 2%, so that's rare. The most common in this study was cognitive impairment, approximately at 20% reported. So when we think about PECS, it's more of there's a sphere of problematic different factors, such as naturally, we're having advanced ICU technology, we're having more alarms in the ICU ringing, we have more procedures that we're starting gradually compared to 20 or 30 years ago, we have an aging population as well, and then you have a critically ill patient who survives the ICU stay. On the side and closely connected is PECS family syndrome, which we will talk about in the next subtopics, and then your ICU survivor will have either one of the three impairments or two or all three of them. As you would think, the long-term prognosis for these patients is definitely affected whenever they develop any of these impairments. So diving deeper into the foundations of PECS or what it is, this interesting study looked at ARDS patients, 645, and they were trying to see if statistically we can put these cases into different boxes using a statistical method called recrusion partitioning, and it was found that the third type was severely impaired physical aspect, moderately impaired mental health aspect. They represented 40% of the patients when studied. Luckily, the fourth category, severely impaired physical, severely impaired mental aspects, was the most rare in this cohort. Thinking about risk factors, so it's day one in the ICU. I have a new admission coming up from the emergency department. I look at the patient, and any ICU patient is at risk of PECS, but I'm a little bit more concerned when I have specific risk factors. So research is showing that advanced age, female sex, history of mental illness, and severity of illness, these four factors are non-modifiable, unfortunately. It's beyond our control. However, the fifth factor that I highlighted is something that we can affect. So that's basically your patient's experience in the ICU, their pain, delirium, how much procedures are they getting, and so forth. So, and followed by that, delirium per se was also found to be an independent risk factor for developing PECS after discharge from the ICU. So probably the last two risk factors are the ones we can work on to prevent PECS. Looking at the physical aspects, so remember we have three aspects, physical, mental, and cognitive. The physical aspect looks at, we can put an umbrella of ICU-acquired weakness. Universally, almost all patients come out of the ICU weaker than when they came in, even if it was a shorter stay. So we have this umbrella of ICU-acquired weakness, basically a bigger box there of muscle deconditioning where you can put these different pathologies which require EMG and diagnostics to establish, which are namely critical illness neuropathy, polyneuropathy, critical illness myopathy, and the combination of both, which is fairly common. It's not essential to establish the diagnosis in certain cases, as the management is mostly similar with rehabilitation, but we'll touch more on that in the next few slides. The mechanisms involved in PECS is actually interesting, the physical aspects, the weakness, there has been multiple studies looking into what is the exact mechanism going on at the cellular level. So proteolysis through activation of certain systems can lead to direct muscle breakdown, loss of muscle mass, those muscles are, those myocytes are breaking down and dying every day in the ICU due to the inflammatory surge the patient is having, not to mention lack of motion of most of the skeletal muscles. However, on the cognitive side, establishing a specific cause effect is more difficult. Some studies based on limited cases, based on autopsies have found microglial activation was entertained as a mechanism or a mechanistic factor, oxidative stress and mitochondrial dysfunction to happen even though there's no clear direct injury to the CNS, but this has been seen and described for patients who had ICU hospitalization. This study was published in 2022, and here they were looking at trying to subtype patients into hyperinflammatory and hypoinflammatory categories based on CRP interleukins. Interestingly enough, they did not find a difference in six minutes walk at six months and on the SF-36 mental health questionnaire. The patients in both groups basically appeared to have similar outcomes on those two metrics. However, as you would expect, the hyperinflammatory group had less survival at 90 days, but it did not differ after that. So those who survived past 90 days, whether they were hyperinflammatory or hypoinflammatory, basically had similar survival outcome. So now it's day one in the ICU, and I want to start preventing PICs in my patients. So we have a couple of guidelines from the Society of Critical Care Medicine. We have the ICU Pain, Agitation and Delirium Guideline, and the ABCDF bundle that most of us are familiar with. A, standing for assessing and managing pain on a routine basis, having a lower threshold to address pain in the ICU that can be sometimes challenging to PIC, obviously. Spontaneous breathing trials and spontaneous awakening, very essential, as much as we can. We can do it more than once a day if the patient is able to tolerate and they don't have a contraindication. Your choice of sedative, trying to limit benzodiazepines, daily delirium monitoring and screening, early mobility, getting them to the chair, and family engagement and empowerment for sure is core for helping to prevent PICs. Other things that you can also add is ICU diaries for your patient. Early mobilization, we'll touch on a little bit in the next couple slides, where you want your patient, if they can get to the chair, the next thing, they need to walk. It requires more team effort, definitely, but it's very essential for, especially for the physical aspect and reducing delirium as well. Using non-benzodiazepine sedative, as I mentioned, they have a longer half-life and also they have been associated strongly with delirium in a lot of studies. So you don't want delirium, you don't want PICs, so I use benzodiazepines when I'm totally stuck or there's a clear medical indication to use them. Humanizing the ICU experience, we'll touch on as well, and family's participation, which we have a different subtopic for. For humanizing the ICU, Dr. Gayetch at Mayo developed the Get to Know Me board, where it's basically at every patient's ICU room there is this board that has data points gathered from the family about the patient's hobbies, their favorite book, their favorite TV show, and so forth. So that way, when I'm walking into the ICU room for the patient, I can read this information and it helps me engage the patient in a non-medical way, in a more humane way. So basically, able to start a conversation and even though they're intubated, but as they listen or hear from you certain things that they're interested in, it has been seen like gradually the patients are more connected to the ICU staff and that is basically another step in trying to preventing PICs. Walking your ICU patients while they're intubated, if you have not seen it before, maybe you will be the one who will be asking for it. Once your staff is able to walk the first patient, they will feel more comfortable walking the others. Remember, if the patient just came on day one, it doesn't mean on day two I'm not mobilizing them because they just came to the ICU. Now, a lot of patients on day two are still very sick, you still have some procedures lined up for them where they're hemodynamically unstable, but if they look better to you within 24 hours where you're talking about getting them to the chair, that you also need to start walking them, you might have a better chance of a walk down the ICU hall because they're just new to your ICU and the muscles are probably in a better shape compared to three or four days later. So this is an interesting website from the Dayton ICU Consulting, they have a lot of pictures of patients like playing guitars, walking around while they're intubated. I admit that I haven't pushed my ICU to do it a lot, but here and there we've done it before and definitely very helpful in terms of mental, cognitive, and physical aspects for your patients in the ICU. Thank you very much, don't forget to rate us in the app and we'll move to the next subtopic. Good morning, it's a great pleasure to be here presenting on building an ICU recovery clinic in the urban areas. I'm from the Bronx, New York. I will cover the structure, process, and outcomes related to a post-ICU clinic based on the current evidences. I'm Haley, I work at the Montefiore Medical Center and the Albert Einstein College of Medicine in New York. Today I will review the current literature on practical outpatient assessment and treatment of ICU survivors, which is absolutely a very unique population. I will look into the challenges and opportunities of ICU recovery clinics, especially in the urban region. So as Dr. Kobar just mentioned, one fourth, more than one fourth of the hospitalizations in the US end up involving some sort of ICU level of care. And the majority of the survivors of the ICU unfortunately experience challenges in multiple domains, such as the physical, cognitive, mental health issues. SCCM recently has prioritized the innovation and development of aftercare and recovery services for the ICU survivors. The number of post-ICU recovery clinic in the US is still rather small. It reached the 26 in 2020, and the number rapidly grow over the past three years as we start to increase our awareness of the post-ICU syndromes. An ideal structure of the ICU recovery clinic should be multi-professional and multi-disciplinary because our patients face a lot of challenges, including pharmaceutical. They need a durable medical equipment very often, such as oxygen or walkers. They often need referrals to subspecialties, rehabilitation. They often need to improve their health habits, such as smoking, drinking, weight management, and they often need diagnosing and managing their new or worsening mental or cognitive issues. It's been proposed that the structure of the clinic should be multi-professional. It's a lot of work to navigate and coordinate. The patient should be the center of the clinic and around the patient and their primary care provider, there should be a multi-professional team, including PCP, neuropsychology, social worker, pharmacy, nurses, intensivist. And on top of this already pretty complicated structure, the patient often need referrals to specialists, such as pulmonary, geriatrician, nutrition, palliative, ENT, pain management, all kinds of therapies. You name it. Some scholars also recommended that assessment should not happen only once. It should come in a longitudinal design. This is from a paper from 2018 published by a Brazilian group. They proposed that the initial screening should happen immediately after ICU discharge when the patient is still in the hospital to find out who is at the biggest risk of developing post-ICU syndrome. And after discharge at one month, three months, and 12 months, the patient should go through serial assessment. At different timing, the assessment should have a different structure. For example, they proposed at one month and 12 months. These are the best timing to screen for short-term and long-term mental health issues. And they proposed at three months is probably the best timing to have a thorough assessment including multiple domains. And don't forget about screening their cognitive dysfunction. SCCM agreed with this longitudinal design, and they named the serial assessment as functional reconciliation. Just as if you reconcile the patient medications, you also reconcile the patient functional recovery in different domains. They also recommend some structured assessment or instrument that can be used. For example, the URL quality of life 5D questionnaire for the patient quality of life recovery. 60-minute walk can be used for physical recovery. Some questionnaires such as hospital anxiety, depression scale, or impact event scale can be used for mental health recovery. And the MOCA questionnaire can be used for cognitive recovery. The caveat is that all of this instrument listed here still don't have enough information on their validity and usability in this very unique population. So a holistic assessment of the patient is still needed in addition to using the structured instruments. So here I'm gonna list a couple of published study looking at the impact on the patient outcomes. All of the study that's gonna be listed here have controlled group, but not necessarily designed as randomized trials. The first chart here listed the studies that looked at the patient's physical recovery. And as you can see, the design of the ICU recovery clinics are very variable. Some of them are nurse-led, some of them are MD-led. And in terms of the inclusion criteria, the timing of post-ICU visit, a lot of times they're just decided on the convenience of the group. They used different types of intervention. The first study here published by Jones from the UK used the self-help rehab menu given to the patient in their clinic visits. And they found out that this education on rehabilitation improved the patient physical function. But unfortunately, in other studies, such as the second one using home-based rehabilitation and the third one and the fourth one here using outpatient exercise program, they did not show a difference in patient physical recovery. And this chart summarized the other studies focusing on the patient's mental or cognitive recovery. The first two studies, they're both from the UK, look at the usage of ICU diary, which helped the patient to reinterpret their experience in the ICU. And they found out that using ICU diary helped the patient with the recovery in their PTSD, anxiety, and depression. And there are two studies, one from Denmark using recovery programs based on psychological approaches, and Australian study using psychological counseling. And neither of them showed impact on patient psychological recovery. The last chart here summarizes the studies looking at the multi-model design of ICU recovery clinics. And again, some of them are nurse-led or some of them are MD-led. The first one called SMOOS trial from Germany, and the second one is called Practical Trial from Scotland. They're both before the COVID pandemic. Neither of them showed a significant impact on the patient quality of life. However, there is one very exciting cohort reported by Dr. Snow in Geisinger Medical Center in Pennsylvania. They reported that using an MD-led structured multidisciplinary assessment, they were able to improve the patient mortality at one year comparing to the control group. And the usage of post-ICU multidisciplinary assessment was also associated with a significant reduction in the healthcare-related cost. This talk cannot be complete without talking about the financial aspect of building an ICU clinic, because as we just mentioned, it really takes a lot of effort, a lot of navigation and coordination. As we all know, the ICU survivors have very high usage of healthcare resources and very high cost related to their care. It could be up to more than $20,000 after two years after discharge. And a lot of scholars proposed that at least some of these readmissions should be avoidable if they had timely and appropriate outpatient care, just as shown in other populations, such as people who live with cancer, heart failure. And the Dr. Snow study from the Geisinger Medical Center also reported that the patient who had access to their post-ICU follow-up had a 66% reduction in cost related to readmissions. I would love to share a little bit of my experience working in the Bronx, New York, very urban, very well populated region. Our biggest challenge is the low attendance of the patient, contributed by their lack of transportation, severity of illnesses, and a lot of them are still in rehabilitation centers or nursing homes that prevented them from coming back to the clinic. I often find myself spending more than one hour with one patient because they're extremely complicated socially and medically. Lack of funding is also very common challenges faced by many post-ICU clinics. In addition to venues created by clinical billing, a lot of them are seeking for additional support, such as volunteer staff support, institutional support for staff, spacing, IT, and a few of the clinics have support from grants or foundations. It's a very humbling experience learning that how vulnerable my patients are in the Bronx. They are very often at risk of healthcare disparities. We screen for their social determinants of health, and so often I realize that they're worried about their basic needs, such as housing, fresh food, medication, utility bills, transportation, childcare, and you can imagine when someone is worried about those basic needs, it's very hard for them to learn, and it's very hard for them to get access to good healthcare, a very big challenge for us. There is a great resource opportunities in this area. For example, there are still a lot of unanswered questions. Can post-ICU follow-up have impact on patient outcomes, such as mortality, readmission, cognitive decline, economic recovery, et cetera? And which is the subgroup of patient who would benefit from outpatient follow-up the most? We still don't know. We still don't know the optimal timing, the optimal standard assessment tools for follow-up, and it will be a great opportunity to explore the role of telemedicine in this group of patient who always have a hard time to come back and who always have a lot of appointments to go. Thank you. Good morning, everyone. My name is Dr. Syed Ahmed. I'm a physician from Medical Health System and assistant professor in University of Toledo Medical Center. I'm thrilled to be here today with you and to collaborate with this team so we can dive deeper beyond survival and ICU. On my section, I would love to turn our focus not just to the patients, but to the patient family so we all can further understand and appreciate the significant effect of having a loved one in the intensive care unit. In our presentation, we aim to increase our understanding of the effect of ICU experience to the patient family and identify the risk factor which make patient family in high risk for such an effect and talk together about procedure we can do in hope to reduce or even prevent any kind of bad effect coming from the ICU experience to the patient family. So let's set the tone to my discussion by share with you some real live patient family codes that basically summarize their experience through the ICU. And this came from research done by Mr. Van Slevens and his group. As I will say, this is basically the core of why this question is, the experience they've been through. The important information I found when I was looking into this research, did you know that unpaid caregiver had saved the US health system more than $600 billion a year, right? That's at least what Charlie and his group has found out by analyzing data from 2011 to 2012. With this inflation, I believe the number is most likely even more. So how this experience affect the patient family? Different study have looked into that and they found that the most common side effect coming from that experience is mainly depression, anxiety, PTSD, sleep deprivation, it is stressful economically and also it can cause compromised quality of life. So due to the importance of that, the concept of post-intensive care syndrome have been introduced to the Society of Critical Care Medicine in 2010, as Dr. Kobara had told us before. I won't repeat that, but like the challenge we're having here is, our challenge started on the day the patient is admitted to the intensive care unit, right? If the patient survive, he's in a high risk of post-intensive care syndrome. However, independent of his survivability or outcome, the patient is always at risk of post-intensive care syndrome, and the care should start immediately on the time of admission. So, how common is that? Different studies have looked into that. One of them was a study done looking at 24 studies that was a literature review, and the prevalence of post-intensive care syndrome among family was between 20% to 50%. I wanted to focus on other two important studies. A Canadian study done by Dr. Cameron and his group in 2016, they investigate 200 caregivers following the center of epidemiological depression score, and they found that around 60% of families had suffered from clinical depression among discharge. One year from now, it's 40%. Compare that to a Japanese study done by Mr. Miyamoto, published in 2021. These look at database. So they look at spouses and the incidence of development anxiety and depression after the ICU experience. In six months, that's, what, 13%. I would say this gap is the gap between our current health system, where we wait for the patient and family to come and complain of depression or anxiety for us to treat them, and a health system where we can be more active and look into patients and try to help them out by doing better screening. So COVID came to us, and everything went worse, especially communication, information, and visitation time, right? And when we look at the study we've done about COVID, we found that the prevalence of post-intensive care syndrome among family was between 30% to 50%. So who's the population at risk? When we look at different studies, we actually identify multiple groups who are actually at higher risk to be vulnerable to post-intensive care, especially among family. That's our female gender, young age. That's among the caregiver or the patient himself. A spouse, and that's questionable. Some studies say the spouse is a high risk, and the spouse is not in other studies. And the history of mental challenge on the patient-family side, and a low education level, and most likely that's because of lack of communications. We don't pass the clear picture to the patient family. So what do we do about that, right? Post-intensive care syndrome starts small when the patient is admitted to the ICU and gets worse as time goes on. So I would argue that call it post-intensive care syndrome. It's a great effort to put a focus on the deep root of the ICU experience of the patient family. But when you say post, it gives the idea it's after, right? So while I'm not saying it's lacking, I would say it's not capturing the full picture. The care should be provided immediately and even before the patient is admitted to the ICU. Because I believe that the issue started when the patient gets sick, more than when he was admitted to the intensive care unit. So what can we do? Two areas we can help with. While the patient is in the intensive care unit and while the patient is discharged, or after the discharge of the patient in the intensive care unit to help the family. A lot of procedures have been studied, as I mentioned by my colleague there. But if you look at everything, communication, information, the two important concepts we have to look at is communication to be clear and you have adequate information. If you provide that with whatever procedure you ask for, that's going to help the patient family significantly. So what we can do after the patient is discharged from the intensive care unit. Also, a lot of procedures have been studied, but I want you to go home with two important concepts. Adaptive strategy. So the patient family is ready to what is coming for them. And a recovery program. So they can recover from the experiences they've been through. If you have these two concepts, then everything you do is most likely going to help. Nothing is easy and everything has a challenge, right? So for us to improve this kind of quality, we have hurdles and challenges we have to face, starting with background noise. You've been in the ICU, everything is noisy. The patient was sick, social issue, medication, and so on and so forth. We can face that with teamwork more than anything else. We need to improve our screening, we need to improve what kind of procedure we do, and fragmented care. As everybody knows, we all help the patient in a different stage of his healing journey. However, our care sometimes is fragmented. So I take care of him in the ICU, my partner will take care of him on the floor, and then his PCP will take care of him when he leaves the hospital. So we need to try to be more alignated and like to provide care back-to-back, instead of the patient fragmented care we're providing right now. And one more thing is, should we provide one size fits everybody, or should we provide an individualized care? People will argue on both sides. I will say a fundamental bundle that provides the basic help should be provided with some space for us and for individual approach to the patient family. In a summary, post-intensive care syndrome and all the ICU experience affect the family in a deep way. Often this is in a hidden way, so we have to be proactive, we have to provide a clear message in our communication, and we have to face each challenge with understanding and with empathy. I would love to finish my presentation by sharing my own experience with one of a couple I used to take care of when I was a resident. The husband, unfortunately, had a stroke, and the wife did a great job on helping him out. He was always clean, with a good trick, no bad source. However, I regret that every time I was talking to this couple when they meet us in the clinic, I was focusing on the patient himself. What should we do? How should we help him? How should we keep him out of the intensive care unit? Or if the hospital altogether, because I used to be a resident. Unfortunately, two years after that, he passed, and this quote is from the conversation we had at that time. Knowing what I know right now, I believe she was not the one who could not meet his needs. It was I who was lacking to meet both their needs. I should have been more proactive, talked to herself, asking her what she needs, help her out, and see what I can do to make her life better, and tell her she should focus more about herself. I wish that after this conversation we have all together, we can all provide a more holistic care to all of our patients and our patient family. I will answer any questions you guys have, and if you don't, I will leave the rest of my time to my partner. I'm Carla Steven. I already introduced myself at the beginning of this session. I'm at Vanderbilt, and I'm going to talk a little bit about the perspectives and solutions for ICU recovery that caregivers have actually given us themselves. I have a few disclosures, some research funding from these funding agents and work together with some of my colleagues in Scotland and Australia and around the world to put this book together, Improving Critical Care Survivorship, which is not going to be funding my retirement in Hawaii, but still a disclosure. I want to talk about the strategies for improving recovery as outlined by survivors and just touch a little bit on this sort of regression of best practices for supporting caregivers in the ICU that happened during COVID and then really emphasize how we can embrace and support caregivers even today or next week or whenever we go back to our ICUs. As a little bit of background, my colleagues have already talked about this recovery from critical illness being a trajectory that starts in the ICU, and in the ICU is where we've really focused, rightly so, a lot of our efforts on improving mortality and morbidity. Obviously, if you don't survive the ICU, then you can't have ICU survivorship. So first and foremost, we need to focus on that recovery, and we've talked a little bit about the 8F bundle and some of the things we can do in the ICU. But the recovery from the patient's perspective and the perspective of the caregivers is much longer, and for those of us who are mainly based in the ICU and practicing there, things start to get a little fuzzy when patients get transferred to the ward. Their discharge preparations are usually not being made by us but by other people who did not experience their critical illness stage firsthand. And then when they go home, we really have no idea what's happening, and we have lost all track of them. And patients and caregivers really experience this drop-off in care and attention. This is some artwork by Nancy Andrews, who's an artist who had a critical illness herself and did an amazing series of ink drawings related to that experience. And just a lot of patients have told us that they feel like they're at the bottom of this dark ditch when they leave the hospital. And perhaps ironically, as a slide deadline for this talk was coming due, I was sitting at the bedside of my father, who was admitted to the ICU in another state, and I was struck by how communication happens in the ICU. So, of course, I'm a critical care person, so I already knew everything that I was seeing in front of me, the monitors and the rounding and who comes in and who does the IV and what's the PIC team and blah, blah, blah. And these were all the people who came in the room within a 24-hour period. And the communication to my delirious parent was not complete. There's a great quote, I can't remember who said it, that the biggest problem with communication is the illusion that it has taken place. And this was from the perspective of somebody who was allowed to be at the bedside 24 hours a day. Obviously, in COVID, we did not have that. There were many hospitals who did not allow 24-hour visitation in the ICU pre-COVID, but even the most liberal visitation policies were clamped down on in COVID. This is in my hospital at Vanderbilt, and this was a patient who actually did not have COVID, but because of the COVID restrictions, was not allowed to have family visiting in the ICU and became really floridly delirious. So during the pandemic, we went from pretty heterogeneous visitation practices in the ICU to almost no visitation. At Vanderbilt, I think we had the most liberal visitation, at least in the city, maybe the state during COVID, and that was you could come stand outside the door from 1 to 3. So that was pretty pitiful and caused a lot of problems, I think, for patients and families and also caregivers. I mean clinicians, those of us who were trying to provide care at the bedside really struggled not having the families there. Decreased frequency of family updates. Again, if the family's not at the bedside, it's easy to not catch them on the phone. We were lucky at Vanderbilt to actually have some volunteers from other divisions come and round with us and volunteer to be the physician who gave the family updates while we put in all the chest tubes, which is amazing. And of course we had a lot more sedation, decreased mobility, and our resources were really stretched. So all of that sort of caregiver-oriented family orientation that we had worked hard to develop kind of fell by the wayside. So how does communication happen in the ICU? That's of utmost importance, and again, not that I was interested in this area before I had to be the caregiver at the bedside, but it's fragmented even under the best circumstances. There's a lot of verbal communication, which is very difficult for patients who are perhaps delirious and for family members who are receiving perhaps verbal input from 10, 15, 20, 25 different people coming into the room every day. There's written communication, and the whiteboard in the room where we try to, I think most ICUs have a whiteboard where we're trying to orient the patient to the day and who their team is and who they can call if they have trouble. I was really struck in my dad's hospitalization how much he was reading the whiteboard and trying to figure out what was going on. And one of the consultants had written some things, you know, follow-up blood cultures or whatever, and he just kept reading those over and over, and they weren't updated after the first day. So he kept saying, like, am I still getting blood cultures? So a lot of communication happens around the patient and not to the patient. I should mention that the patient in that case was also a physician and really wanted to know everything that was going on. So verbal communication has problems, but it's better than no communication. Written communication is extremely important for family members as well as patients. So many places have a patient portal now where you can see some or all of your chart, and I can promise you that every one of his caregivers was scouring the patient portal every day to find some clues as to what was happening and what data might guide the next steps. Electronic communication is very important for families. So we talked a little bit about ICU diaries, which is also mentioned here, and those can take many forms, but a lot of families will create their own sort of ICU diary without calling it that or being prompted by the medical team. So it may be a text chain or a Facebook update or some patients will start a caring bridge or sort of meal plan thing to help other family members to participate in their care. And those kinds of updates, patients and families often use those and put them together to sort of create a post hoc ICU diary after they've left the ICU to fill in the blanks of what the patient might not remember. So that's in the ICU. How does communication happen after the ICU? It mostly doesn't, so that's a big problem. And patients and caregivers tell us that they really feel that lack of ability to connect back to their ICU team as an abandonment. So this is some qualitative data that we did under the Society of Critical Care Medicine trying to just collate in a more sort of scientific regimented way what the experiences were that our patients and their family members were going through. And one of the patients said, okay, so now what? Where do we go from here? Who are we seeing next? When's the next appointment? Is anyone going to ring us? Obviously a Scottish or Australian person, not a U.S. person. Is anyone going to follow us up? And for most patients the answer is no. The standard of care is really follow up with your PCP in two weeks. If they don't have a PCP or we don't tell the PCP that they were in the hospital and we don't give the PCP any information about the ICU stay, then that tends to lead to a suboptimal delivery of post-ICU care. Some of the other things that we could be doing with relatively little infrastructure according to caregivers is just a phone call. A post-discharge phone call is a good starting point because at least it keeps that line of communication open. So they're telling us that they want to be able to get back to their ICU team who actually knows what they went through. Written information, because so much information is coming in like you're trying to deal with your own feelings and you're trying to deal with a person that's sick and then you're trying to deal with your family and your children. And then someone comes in and tells you something. And obviously an Australian person who was interviewed here, yeah, mate, just give it to me, put it in my bag, I might lose it. We've experienced some really great outcomes actually after just giving patients very limited written information prior to hospital discharge, even as limited as a follow-up appointment with a phone number on their discharge paperwork. When we started our post-ICU clinic at Vanderbilt in 2011 and 12, one of our first patients that we asked to come back did not want to come back. And she was mad about something, probably justified from the hospitalization. And seven years later she was still having trouble with her ICU processing, her ICU stay had some sleep disruptions and things like that. And she pulled out her discharge paperwork from seven years prior. It had the phone number of the clinic on it with the intended appointment date, and she called us up and made an appointment. So the best time to come to clinic is seven years ago, but the second best time is today. And she came and we were able to hook her up with our peer support group. So people are just being bombarded with information, but it's not always useful, actionable information, and they're asking for written information. Links, an app on my phone would be great. There are some attempts to create sort of recovery apps that can help guide people with information. Most of those are not specific to the patient, but any information would be good because our patients often tell us, like, they had a lot of trouble post-ICU, but they didn't have a name for what their problems were. They had never heard of post-intensive care syndrome. As one patient said, I didn't even know what to Google. So if you don't know what to Google, it makes it hard to get to the right information. So this is a figure from the paper that I'm mostly referencing here, this qualitative data that was really focused on caregivers after a critical illness. And one of the caregivers who was interviewed for that paper gave us this gem of a catchphrase, hope and tools. So they need a lot of practical information. They're asking for practical support about what's going to happen. How can I be the best caregiver that I can be? As we just heard, our caregivers are providing over $600 billion of unpaid labor every year. The least we could do is let them do their job well and give them the tools that they need to do that job well. And that might be med management, home health, aftercare programs like post-ICU clinics or peer support, online resources that they can reference, and even sort of practical things like time accommodations, like help me, don't give my person an 8 a.m. clinic appointment because it takes us three hours to get ready and get out of the house. So just things as simple as scheduling and executive function support. And then on the other hand, the emotional tools, the hope to keep going. Peer support has been fantastic for our patients. We have a number of peer support groups for patients and families recovering from critical illness, and they learn a lot of practical knowledge from each other in that forum. And just the reassurance that they're doing the right thing, that what they're going through is, of course, not normal but typical and expected, and that they are a valuable resource in their recovery for their person. So just to emphasize again these transitions of care and how valuable I think the intensivist perspective on recovery is, one of our interviewees said, yes, his general practitioner knew about the situation, but they sort of don't know about the actual situation of what the patient was in. I don't think anybody really knows what he was in, only the ICU people and the rehab people. And it's sort of like that game of telephone. When they leave the ICU and then they get a handoff and then a little bit of information is lost at each stage, and then when they get back to the PCP, there might be no actual information about what they need to recover. So this is, again, from a related qualitative study where patients and family members really outlined for us what they think the important components of an ICU recovery program are. So we talked about multi-professional, have an intensivist in the room, but what are the actual pieces that are important to patients and families? Caregivers would like interventions that are specifically tailored to them. So as Tamara mentioned, he was so focused on his patient who had a stroke, and he regrets not being able to support the patient's wife more thoroughly. And, of course, we don't get that training when we're in medical school and residency and fellowship, how to better support caregivers, but that should be part of the curriculum, right? And how can we develop that? Normalization and expectation management I just circled because it's something we can all do today. Like we can talk to patients and families and tell them, you know, this is going to be a long recovery. These are the things that I could expect to happen. Those would be expected. If you run into something unexpected, we're here to help you. Call this number, email this email, and we'll help you. Care coordination was also mentioned because these patients have so many needs, and ironically that's one of the barriers to actually having them come to an ICU aftercare program because they're like, I already have to go to the nephrologist and my PCP and I've got this and that appointment, but there's nobody really coordinating all their care. And we often see in post-ICU clinic that things that we think are happening at hospital discharge like, you know, getting rehab and home health and those things are not happening. So we need to follow those up. So again, back to the trajectory, and this is from the timing it right framework, which I've adapted for our purposes here. Not just from the ICU to the floor or just from the hospital to home, but at every stage of transition in the ICU recovery trajectory, there's probably something that we should be doing starting all the way back in the ICU as soon as we are taking care of the patient that's critically ill and hoping or knowing that they're going to survive. And anticipatory guidance, you know, again, there's a lot of research that needs to be done on what the most effective interventions are, but there's something that we could be doing right now at every stage. So for example, in the ICU, the ADF bundle, at discharge from the ICU or from the hospital, anticipatory guidance and education, discharge planning. We've used telemedicine to great effect sort of in the early post-hospital period when it's hard for folks to get back to a clinic. But a comprehensive post-ICU clinic is, in my estimation, also worth doing. And sometimes in the later stages, a debrief of the ICU diary or peer support. And just that anticipatory guidance, I want to show you this study because I think it demonstrates how powerful anticipatory guidance can be. So this was a study we did at Vanderbilt right in the last six months before we went to the epic changeover in 2000. I don't remember when that was. It seems a long time ago. But we randomized patients to either get an ICU recovery program, which consisted of some anticipatory guidance, a written brochure about post-intensive care syndrome before they left the hospital, a hotline that they could call 24 hours with problems after leaving the hospital, and an email as well as a post-ICU clinic visit. Very few patients came to clinic. Hardly anybody called the hotline or emailed the email. And yet we saw this spread between the two groups in terms of readmissions. So the patients who had the ICU recovery bundle were less likely to be readmitted, especially in that early post-hospital period. And although we didn't really have the data about anticipatory guidance to say that that was the reason, that was really the only thing that the patients got in the recovery bundle group, in the intervention group, that was statistically different from the control group. As I mentioned, we also had a lot of trouble, as they do in the Bronx, getting patients to come back to clinic. We have a pretty wide geographic referral area, and so sometimes patients live hundreds of miles from Vanderbilt, so getting back to clinic after their family members have already taken off all the time they can from work to be with them in the ICU. We implemented this telemedicine version of our clinic, and it really allowed us to reach patients at this critical time. So we know if somebody is going to get readmitted after a critical illness hospitalization, it's probably going to be in the first couple of weeks after they go to home, and the clinic visit is probably not going to be in the first couple of weeks. So it allows us to reach patients at that critical time in the post-hospital period. It's pretty cheap to get it going. You get to see the family and the home environment, which is sometimes extremely revealing. And even though we can't do a lot of our physical assessments, we can screen and triage sort of the common post-ICU problems, a lot of med management issues, not being able to get their durable medical equipment, home health never showed up with the IV antibiotics, et cetera. There are some disadvantages. We have limited objective data, although not none, especially in the sort of COVID era. I don't want to say post-COVID because obviously we're not post-COVID. But a lot more people have pulse oxes now, so a lot of patients you can just ask them to put their pulse ox on, stand up, walk around the room. We got a bunch of people off of oxygen that way. And you get a heart rate, too, so there's two vital signs. Still some regulatory hurdles and maybe some reimbursement uncertainty, although I think it looks like it's here to stay. Technical barriers have not been as high as we anticipated, but certainly in rural areas of the U.S., there are a lot of places that don't have broadband. Patients don't have unlimited data. So if your visit's going to be 60 minutes long, that's going to use up a lot of their phone minutes, and that could be a problem. But this is just a flow diagram of what we do in our post-ICU clinic. And you can see, except for the spirometry and the 6-minute walk test, we can do almost all of these things over telemedicine. And this is some pilot data, but we just got some funding for a randomized control trial, so we're pretty excited about that. So in summary, I'll just say that patients and caregivers need support in and after the ICU. Both emotional and practical support is needed, so hope and tools, if you remember nothing else. We can prevent additional morbidity after a critical illness with appropriate screening and prevention, and communication is so key. We found that we learn a lot in our clinic, that we are able to feedback upstairs to the ICU and improve our ICU care as well. And if this is something that you're doing or that you're interested in, I invite you to join CHIRO. This is the Critical and Acute Illness Recovery Organization, which is the collaborative that He-Yi referenced. It's over 50 post-ICU clinics worldwide now who are working together to try to create that evidence base to allow more patients to experience ICU aftercare. Thank you.

post-ICU syndrome

physical impairments

cognitive impairments

mental health impairments

awareness

support

symptoms

risk factors

prevention strategies