SCCM Resource Library-Beyond the ICU: Critical Illness Survivors and Our Community (THRIVE)

Video Transcription

So, good afternoon, everyone. We'll start on time. My name is Giora Netzer, and I'll be moderating this session. So, a few housekeeping remarks. Please move to the center of the  row, fill in all seats, and do not save seats or sort your personal belongings on the seat  next to you. Location of the exit doors. Silence your cell phones. If you wish to leave the session for any reason, please exit quietly. And basically here, CME is available on the  Congress app. All speakers will disclose any conflicts. If you see a no social media icon on the slide, please do not publish those digital photographs. Be mindful that social  media provides an open air forum for presenters, conference attendees, and the public. Good manners and respect shall prevail. And if you're tweeting, please use the hashtag CCC49.  And it's my delight to introduce a wonderful group of panelists today for the Thrive initiative.  This is part of a great journey that Society of Critical Medicine has led that will also continue with the Critical and Acute Illness Recovery Organization, CHIRO. So, to start,  I'd like to introduce Ashley Montgomery, who is the Associate Professor of Medicine, Associate  Professor of Medicine at the University of Kentucky, and the Director of the IC Recovery  Clinic. So, Dr. Montgomery, thanks very much. Right-click, left-click, left-click. Greetings,  everybody. Happy afternoon. I am a physician at the University of Kentucky, and I'm privileged  enough to lead an ICU recovery clinic there. I have, to figure out how to use the mouse first, I have no disclosures that have in any way affected this talk, except that I  lead an ICU recovery clinic. So, the objectives today are to identify the key mechanisms that  post-ICU clinicians perceive improve care within the ICU clinic, or within the ICU setting itself, and to discuss enablers and barriers that folks who work in the post-ICU world  feel help support and enable their work. So, I would like first to talk a little bit about the Collaborative Assessment of ICU Recovery Needs, better known as CAREN. So, this group  was developed to help evaluate the global impact of the Thrive initiative. So, Thrive was developed through the Society of Critical Care Medicine, and it consisted of two different  collaboratives, one focusing on peer support groups, and the other on the ICU follow-up clinic groups. And this work was funded and made possible through the Society of Critical  Care Medicine, both the collaborative groups and the CAREN group. So, I'm presenting this work today on behalf of the CAREN team, which was co-led by Dr. Kimberly Haynes, Dr. Joanna  McPeak, and Dr. Carla Sagan. And their institutional information is here. So, CAREN has published,  currently, has published two articles, the first of which was published in June of 2019 regarding key mechanisms by which post-ICU activities can improve in ICU care. So, this  was focused on looking at, in the post-ICU world, what is happening that might be felt to be actually improving care of the patients within the ICU itself. And the second article  that was published was in September of 2019. And this had to do with the groups themselves, the participants, the clinicians, what did they feel like were enablers and barriers  to participation and implementation of both ICU clinic collaboratives, as well as peer  support groups. So, I'll start here. I hope that everyone in this room is now familiar  with this diagram of post-intensive care syndrome and the fact that it affects not only patients,  but also families. And it affects them in a number of ways. And that our growing knowledge  and desire to help with these syndromic issues has led us to believe that the post-ICU care  continuum is an important part of ICU and critical care. CAREN was developed and the Thrive initiatives in themselves to help understand this gap.  So, as the patient is in the ICU and they're critically ill, historically, we dropped them  off at the front door of the hospital and said, great, you're better, yay. We now understand that there's this huge space between when the patient leaves the acute care setting  or even an institution as a whole and when they return home and what sort of resources that they are going to need in that gap period. And the Thrive initiatives were developed  by the Society of Critical Care Medicine to help all of us to begin to understand what sort of novel and creative ways we could help this patient population.  So, initially in 2015, we started with the Peer Support Collaborative. And this was a group of people who came voluntarily to the Society of Critical Care Medicine. We put  out a call and people came and said, we're interested in participating. The group met monthly on a web-based platform with a facilitator from the Society of Critical Care Medicine,  sort of a staff person, as well as a clinician who was also participating in the Peer Support Collaborative group. And then we also met annually at the Congress for a full day sort  of session. And during these meetings, we discussed anything from how we were mitigating billing issues, how we were staffing, told stories about patients and how we might reflect  back and forth on care. Also helped to develop a framework, which we hope can help other  people facilitate similar endeavors. We then followed in 2017 with a post-ICU clinic collaborative and it functioned in much the same way.  So Karen sort of is the research arm of this group, I'd like to say. And they came together  prior to Congress in 2018 and said, we need a way to begin to gather data from these wonderful  insightful groups of people who are caring for patients in the post-ICU realm. And sent  out an email to the participants and asked for voluntary participation in a 60 to 90 minute sort of facilitated group interview about how the participants felt. It was held  at the 2018 Congress and the end of the day-long meeting. There were two groups, one for peer  support and one for ICU clinic collaboratives. There was some overlap. Some people participated  in both. As you can imagine, people who are sort of invested in this part of patient care tend to be invested, could be invested in both of those groups.  So the researchers were trained in some specific models. We came together. They used lots of  prompting and questions about the development, implementation and sustainability of the models  and how each participant felt the global healthcare system treated them and things that could  benefit the patients and the healthcare system as a whole. The data were audio recorded and  then professionally transcribed. I had nothing to do with that, obviously. The participants also collected some demographic information. We just filled out some forms  about who we were and our ages and genders and things of that nature. So here's the participant demographics and this is for both ICU follow-up clinic section  here and the peer support section here. You can see obviously everybody, the mean is in  the 40s, years of practice and very multidisciplinary groups, right? So lots of medical, but nursing  and pharmacists and allied health. So lots of different groups of people were invested in this process.  For the purposes of the CAREN research, the peer support was defined as any service that brought together non-professionals, so with similar stressors and health problems, and  it could be unidirectional or bidirectional. So it could have been sort of a facilitator  with an ICU clinic survivor or it could have been a group of ICU clinic survivors facilitating within themselves. And there were lots of different models of peer support, which was  one of the things that we recognized sort of when we were all thrown out to ourselves, we each did the best with what resources that we had. And in ICU follow-up clinics,  they were defined as an event which included at least one in-person clinic visit or encounter with a healthcare professional who had some specialized treatment in ICU survivors. And  what that specialized training is varied greatly across the spectrum. The framework analysis was used for the key mechanisms paper and the enablers and barriers  were organized within the consolidated framework for implementation research. So key mechanisms.  So each of the two, so there were sort of two separate groups, the peer collaborative and the ICU survivor clinic collaborative. There was lots of overlap, but the data was  sort of gathered at the same time for both of these papers for each group. So there's sort of four different sections. There's the enablers and barriers for each of the two  collaboratives, peer support and ICU clinic, which as you can envision are very, there's  a lot of overlap, but there's also some differences in how those two things are going to be enabled  or inhibited, right? And for the key mechanisms, these are things which the people, the clinicians  who were implementing the aftercare program felt like helped them be better clinicians  in an ICU setting or helped drive improvements back to the ICU. So it wasn't necessarily key mechanisms that helped drive their clinic. It was key mechanisms that said, wow, having  this clinic or having this peer support group is really improving care back in the ICU.  So for the key mechanisms for the ICU follow-up clinics, one of the things that people frequently  talked about was this, the benefit to the clinician working in the ICU and this clinical care piece. So the conceptualization that as an ICU physician, when I have to follow  the patient into the post-ICU realm, that I begin to notice that the fact that that date got left off the antibiotic or the fact that they didn't get a wound care consult  or the fact that the discharge summary wasn't really clear about what happened actually has some effect on the patient, the family and their long-term outcome. It affects not  only me when I see them in clinic, but it probably affected the people in between the discharge and me, which I can assure you were many, right? The fact that seeing that patient  actually helps me to feel like I have a connection and that that intense relationship that we  have in the ICU with the patients and family actually can extend and does have some meaning beyond just that one to two to three week intensity. There was also lots of discussion  within the group about the concept of just having information about an ICU follow-up  clinic available within your healthcare infrastructure, whatever that looked like, actually facilitated  discussion and knowledge and recognition of the survivor. So just education and rising awareness, so for patients and families, for staff, right? And we can talk about when you  go into your healthcare system and you see that flyer for your peer support group or for your ICU recovery clinic, it actually makes you think, wow, there must be a need  for a peer support group for an ICU survivor. Wow, there is something, an ICU survivor. So just having those infrastructures within the healthcare system also helped to feed  back to the ICU setting in a way that the bedside nurse or the respiratory therapist who may never actually set foot in the post-ICU world began to recognize the importance of  those pieces. And then there was some interesting things about risk mitigation here and the  fact that there was this opportunity to close the loop. There was this opportunity for patients  to come back and talk about things that had happened that might not have been ideal and to alter those. And for those of us in the setting to then return to the ICU and discuss  them one-on-one with the clinicians. Similar diagram here with lots of information for the peer support group, but again, sort of dividing up the benefits within this framework.  So again, education and awareness, just having the peer support group within the infrastructure of the healthcare system really led to an improved awareness of  picks of the post-ICU journey and of patients after the ICU and the things that they might need. Also found that there was some benefit to clinicians working within the peer support  group in the sense that it helped mitigate some burnout, some compassionate care sort of things that we're talking a lot about in our disciplines right now. And that intense  relationship again, feeling that there was some long-term outcome that mattered in that sense. Also from peer support developed this conceptualization of the super survivor. So  these are the people who after their ICU survivor experience really felt driven to come back and provide some resource to the inpatient setting or to the other survivor. So these  are the peer survivors who either led their own support groups, came back to the hospital  and volunteered going into the rooms and talking to the families, et cetera, or really helped with the development of some new process or product.  So from the ICU follow-up clinics, and now we're going to jump to the enablers and barriers paper. So there were sort of different things that enabled and blocked or barriered the  both of the peer support and the ICU clinic development, correct? And so there are many things that overlap here, but the things that we sort of felt like were the big hitters.  So for the ICU follow-up clinic, the enablers were grouped. The big thing that people began to talk about was this humanization of the ICU survivorship, that the survivors were  not just bodies in a bed in an ICU, but they were actually people who went on to live lives and to have needs and that supporting them in that post-ICU setting really began to give  a lot more feeling of humanization to the people when they were in the ICU, that the clinicians could visualize that for themselves. Also talked about things that helped the clinic  in itself. So having an interprofessional team, almost every clinic involved was an interprofessional team. There were multiple people. The patients in these clinics don't  just need a doctor. They don't just need a PT. They don't just need a social worker. They need them all and they need them all to be working together if they're going to  be successful in their recovery. Having a strong or having some sort of clinic design from the beginning. Alignment of the ICU follow-up clinic to organizational priorities. So if  you're in an organization that really is focused on long-term outcomes, is focused on best care, is focused sort of on patient-centered care, then it was much easier to get buy-in  from your administration. Everybody talked about participation in the SCCM Thrive Collaborative  as being a benefit. And then having motivated clinical leaders. Almost everybody in this group had some sort of a volunteer sort of physician champion, nurse champion, physical  therapist champion, somebody who was motivated to help push forward. So clinic barriers. Some of the things we talked about really were the patient and family  limitations to accessing the clinic and generally the lack of funding. And again, this is going  to bleed over into the clinic and the peer support. So for peer support enablers, things about defining operational processes. So as you can imagine, having a peer support group  with a bunch of people who aren't really trained in peer support became very challenging. So  having somebody who was skilled at group facilitation and allowing debriefing for that person also  became very important. Again, membership in the SCCM Thrive Peer Support Collaborative was super important to most folks involved. And again, the barriers. This is all about  how to get the patients and families there. Non-attendance or not recognizing the benefit of the peer support or ICU clinic collaborative. So in summary, division of the mechanisms  that helped in the ICU divided into sort of an organizational and intra-clinician separation.  So things that could help in the hospital setting or the health care setting with quality improvement, creating this new survivor role, and inviting colleagues to post-ICU programs.  And then for the intra-clinician, just generally understanding the patient experience and improving  the morale of the staff within the ICU. And more about enablers and barriers. So we already talked about all that. So motivated clinician champion to lead the interprofessional team  was one of the key ingredients to enablers and barriers. And then mitigating funding, staff, and survivor identification. I'd like to thank the CAREN investigators, all the  co-authors on this paper, Adair Andrews for her help throughout the development and functionality of the Thrive initiative, and then the SCCM for funding.  I know there's going to be questions. I'd like to have a roundtable at the end for our panelists with a lot of expertise here. I'd like to introduce next Dr. Luco Hope, who's  an associate professor of medicine at the Albert Einstein College of Medicine. Thank you. Thank you. So I get the burden of talking about the epidemiology of ICU survivorship.  I have no relevant commercial interest to disclose. I'm funded by the NIH, and I work for a journal. And we have objectives. Mostly it's to talk about what is known, but as a  corollary to that, of course, it will be important to highlight what is not known. And I'll try  to highlight some of the challenges methodologically for understanding ICU survivorship because there are many. So in general, I think when we study survivorship, we tend to sort of  either do it with looking at specific cohorts of adults. Like in the US, we have older adults  with the Medicare. So that allows us to get some insights into the post-ICU outcomes using  older adults in the Medicare population. There's a lot of literature on ICU adults surviving  acute respiratory failure using, for example, either the prolonged mechanical ventilation cohort studies or the ARDS network studies. And then there's the challenge of the notion  that lots of our patients with critical illness aren't always in the ICU, right? And so severe  sepsis being one of those syndromes that are more frequently treated outside of the ICU and yet is relevant for how we think about survivorship outcomes. And I think in the  beginning in the infancy, a lot of the work focused on doing sort of inception cohort studies, really kind of empaneling adults sort of from the diagnosis or the ICU admission  and following them over time, looking at outcomes and matching those adults to sort of age and  sex and sort of talking then about what the outcomes look like relative to what we think is normal in the age and match controls. And this is sort of an emblematic study from 2016  looking at sort of adults over 16 from Scotland. There's no Medicare in Scotland. And they  looked at 5,000 adults who survived a hospital discharge. And again, it's sort of a relatively  younger cohort than the Medicare population cohorts that you'll see. But I think the overwhelming  thing to take away from this slide is that even after five years, 67% of these adults are surviving. So I think the sort of paradigmatic outcome for ICU is not death. It's actually  survival. But I think we have to move away from such wonderful designs, although they're  important. And I think Jackie Washner showed very brilliantly how important it was to understand  that these inception cohort designs really weren't adequate for understanding particularly  long-term morbidity outcomes after critical illness. In his case, he used the Health Retirement  Survey. And he looked at these three different approaches for looking at outcomes, the sort  of inception cohort design, which I just described, the pre-post, where you sort of just look at the ICU, post-ICU outcomes, comparing it to the pre, and then another pre-post where  he sort of affects, adjusts for the trajectories of the outcomes right before the condition  of interest, which is in this case with sepsis. And on the right, you see the figure showing for these particular geriatric conditions, which was his interest in this paper, of  the six that was of interest, all five of the six were showing increase in prevalence right before the admission to sepsis. And so I think in order to really get a good picture  of the impact of, say, like a sepsis admission on post-ICU outcomes, you really have to get a good grab on the pre-ICU trajectories, not just even the pre-ICU diagnosis. So that's  And a good paper that captures this longitudinal challenge, I think, was Ferrante's paper,  in which he was able to use sort of community-dwelling older adults, and again, linking the Medicare  claims data to really describe pre-ICU trajectories quite nicely, the minimal disabled trajectories,  the mild to moderate disability trajectories, and then the severe disability trajectories.  And she was able to describe post-ICU outcomes based on those pre-ICU trajectories of disability,  not just the post-ICU disability trajectories for these patients, because in this particular  cohort they had wonderful and detailed assessments that were done in the outpatient setting, but also importantly, the sort of post-ICU short-term mortality outcomes. And again,  you see that it matters where you come from in order to really determine how you survive. But I think one of the challenges in this particular space is that a lot of clinical  trials, and there are many, often aren't following our survivors post-discharge to really understand the physical and the cognitive outcomes. And so I want to highlight a recent  work from Gandotra and others, where they looked at, in the setting of a clinical trial, this happened to be a mobility intervention, they followed these adults for six months  after the clinical trial using an assessment tool that's a geriatric assessment tool, actually,  using the short physical performance battery. And in that particular assessment tool, the  score goes from zero to 12. 12 is a pretty high-functioning person, zero is poor functioning.  And they were able to use, again, trajectory modeling to describe sort of the trajectories of recovery, right? And they categorized four trajectories of recovery, which I think is  important to understand. And the figure on the right just shows you sort of the four groups here, which I think is important, right? Because I think there's people who are poorly  functioning at discharge, and they stay so poorly, even after six months. There's some people who begin really poor, but then they kind of get a little bit of improvement. And  then some people who are discharged with some moderate impairment, some who recover back to their baseline, and others who sort of stay with some significant challenges in the  months ahead. So I think this is the kind of work that I think we want to get more of in the survivorship literature. So just in terms of summarizing the physical outcomes,  I think there's a lot more literature in the physical outcomes for survivorship, is that  the bottom line is survivors have new impairments. And mechanistically, I think it's the prevalence  of neuromuscular weakness probably is an important inciting event for a lot of the poor physical  outcomes in our patients. And we've sort of captured very well the disability outcomes using a lot of these different methods. And I cite some of the papers here.  In other domains of outcomes, I think it gets a little bit harder. Rates of mental health impairment, I think, are well described to be higher in ICU adults who survive. And  it seems to be higher than general populations, and also higher than even other clinical populations  that are considered quite sick. And so that's kind of the bottom line. But I think if you look specifically at, say, post-traumatic stress symptoms, which, again, it's important  to highlight these are symptoms of intrusion of the events. These are symptoms of avoiding traumatic insults or increased arousal. In a meta-analysis by Parker's group, you're  able to see that the prevalence, depending on which cutoff you use for the most commonly measured questionnaire, the impact of event scale, it could either be 25% or 44% at the  first few months after discharge. It does diminish at the 7- to 12-month range, but not to levels that would be still not considered very high. So 17% if you use the sort of first  cutoff, and then 34% if you use a more broad cutoff. And these are high rates of post-traumatic  symptoms. And I think it's important to highlight that families, as well, there are studies that have shown that families also suffer with similar such symptoms, and that these  symptoms are probably very relevant to the attrition that we see in ICU survivorship studies. And it's probably relevant to when we try to call them up over the phone and  get information from them. These are not people who are interested in re-experiencing their events. And so understanding that, I think, is going to be an important component of what  we then have to develop an infrastructure, both for research and for clinical purposes. Similarly with depression and anxiety, and I quote two meta-analyses here showing on  the left, it's the meta-analysis giving you the prevalence of the depression symptoms in adults who survive the ICU. And it's about 30%. And it seems to be relatively stable  over time in the months after discharge, at least looking at the first 12 months. Anxiety symptoms are about 35%, again, using the hospital anxiety-depression scale in this  meta-analysis. And in that particular instance, it's also pretty stable over time. And I think there are some studies from the Hannah Wunsch Group using sort of this inception  cohort design, as well, that suggests that, you know, the psychiatric diagnoses that people come in with do seem to be pretending a higher risk of critical illness. And this is from  the Denmark cohort that was published in 2014. But when you look at sort of the prevalence  of new diagnosis for psychiatric illness, whether it be diagnosis or the use of medications,  there does seem to be an increase in the use, particularly in that first three months after  discharge. And it seems to level off in the last three months of the year after follow-up. Cognitive impairment, I think, is lagging behind a lot of the other domains, partly  because of the difficulty in measuring pre-hospital cognitive impairment. I think in a lot of  the studies, what people use to measure pre-hospital cognitive impairment is different than what  they're able to use in the post-ICU setting. But I list some of the studies here. Only in 2009, 2019, were we able to finally have a cohort study that sort of was able to replicate  something similar to what Ferrante did with her physical outcomes paper, where she was able to, this group in Schulte, was able to look at sort of linking Medicare data with  a cohort of older adults who had good measurements of their cognitive outcomes over time. And  so that's an interesting paper that gave some insights into the decrement in cognitive function  as a result of a critical illness admission. And I list some of the other papers there as well. Risk factors, I think, are an important component here. And I think that's an area  for further study. So and this is the classic paper that we don't have to, you've probably seen this picture before, which came from a multi-center cohort  study in which they assess global cognition at three and 12 months. And again, the impairment in ICU survivors tend to be pretty spread out across many domains, including attention,  visual, spatial, executive function. And here, this is the study that quotes the high prevalence at three months of the level of cognitive impairment that is akin to traumatic brain  injury. About 40% of the patients have such an impairment, and that it persists in 34% of those patients even at 12 months. And so that's a nice paper that I think deserves  to be well cited. Chronic critical illness, which is an area of my research interest, is another sort of subset of broken ICU survivors, which nobody  knows where to put them. But these are people who are really spending a lot of time in the  ICU and then are stuck with prolonged critical illness, needing either dialysis or mechanical ventilation or ECMO increasingly. And there was a recent Medicare look at how to define  this population, and I listed there where the consensus seemed to be about eight days of ICU care plus any of either mechanical ventilation, tracheotomy, multi-organ failure,  sepsis, or wound care would qualify you for this kind of a syndrome. And importantly, I think this is a syndrome that's also going to be increasing over time.  The figure on the right just shows you the age, standardized rates of such a definition for chronic critical illness over the last few years. This is from a cohort of discharges  from five states in the US. And you're seeing that up until about age 80, the prevalence keeps rising. And then after 80, it starts to drop. But it's dropping not because the  patients aren't there. It's just dropping because the patients are not choosing after eight days to stay in the ICU and stay attached to ventilators, which is consistent with older  adults really choosing less invasive care if the outcomes are quite poor. So the question is, how do we predict who's going to have bad outcomes, who's going to  do better? There's a lot of interest in leveraging the biology of aging to better understand  such a heterogeneity in the outcomes for these patients. And so there's a lot of interest in that. And I give you some descriptions here of the different potential biomechanical  pathways through which aging affects the body. And that might be a fruitful area for biologic research. Frailty as well has been a construct that  we borrowed from geriatrics, but it's particularly relevant for thinking about what is the construct  that captures patients who may be at risk for such adverse outcomes. So it highlights this notion that there's different ways to capture people's time before the ICU, chronologic  time, chronos, is one way. And there's also kairos, another word for time, but really is trying to say something more about what is the opportune time for these patients to  predict outcomes. And frailty is defined as a state of diminished physiologic reserve, typically characterized by a poor return to homeostasis after a stressful event,  like, say, severe sepsis or acute respiratory failure. And of course, it overlaps with multimorbidity and disability. Most of the constructs put disability  in one end of the spectrum, with robust being at the other end of the spectrum and frailty being somewhere in the middle. And so this has been an important way  to think about capturing risk for patients. One emblematic study that looked at this issue is the VIP study that just came out, where it was a prospective cohort study.  This is a European study, mostly in France, although they had some ICUs in Turkey and Libya. And they assessed frailty using a global assessment tool, clinical frailty scale.  And they looked at its relevance to short-term outcomes. They also used a pre-hospital cognitive impairment tool, asking the surrogates about the patient's  cognitive assessment right before admission to the hospital. And they looked at the relevance of these geriatric conditions to the outcomes.  And these were mostly older adults in this cohort. And again, you see the prevalence of frailty in this cohort is quite high, 40%. The 30-day mortality is relatively high.  But again, this is an older adult population, over 80. And they talked about two components of predicting short-term outcomes in this cohort. The first component consists of what  you would think of as the activities of daily living, the clinical frailty scale or the frailty measure, and the cognitive impairment.  And the second component being the severity of illness and how old the person was, and that these two components were important enough to predict most of what was  relevant to short-term outcomes. And again, you see some of the hazard ratios there for the frailty estimates, which I think is important. And they've done studies in Canada  that suggest that if you try to implement assessing frailty in an ICU setting across Alberta, that physicians can seem to use the clinical frailty  scale, which is sort of a global assessment of frailty. It goes from 1 to 9. Once you gave them a little bit of an out that said, OK, if you're not so sure, despite all  of the information available to you, you can just say, I'm not so sure, 81% of the time, clinicians are able to sort of designate a frailty severity for patients.  And that when they did it in this way, in this implementation-level study, it's still very much relevant to short-term outcomes  and looking forward to seeing what the long-term outcomes are for this cohort. So I think you guys know that we have a lot of challenges in this space.  There is high long-term risk of death. There is a need for longitudinal methods. And there's a lot of impairments across many domains. And that might be relevant to the attrition  that we see in these studies. And that there are still few clinical trials addressing long-term morbidity outcomes. But I think to summarize where we are with the epidemiology  of survivorship, I think the notion that patients suffer with these high rates of physical, cognitive, and mental health impairment is an important concept.  And that frailty, as one construct, may be a feasible approach to identifying patients with high risk of long-term adverse outcomes. And that we need more data on risk factors  so that we can better prognosticate for adults. Thank you, guys. And if you're interested in this kind of stuff, tomorrow we're having a meeting for the Critical Acute Illness  Recovery Organization at 9 AM at Hyatt Orlando Ballroom N. Thanks.  Thank you. It's my pleasure to next introduce Annie Johnson, who's a nurse practitioner with the Multidisciplinary Program for Critical Care at the Mayo Clinic.  So thank you. I feel very lucky to be standing here today talking to you about the experience of survivorship and caregiver burden among the loved ones.  I'm going to wrap up the day today with some storytelling, essentially. I'm going to introduce you to some patients and their families  to really put faces and that story to this problem that Drs. Montgomery and Dr. Hope really clearly described for us today. So the objectives of this is to really just humanize  this experience. I think many of us in this room can probably share many of these experiences, but I think it's important to talk about these and share these with one another.  We learn so much through that. As Dr. Netzer said, I am a nurse practitioner in critical care at Mayo Clinic. I'm also co-founder of the Mayo Clinic ICU Recovery Program,  where we run an online peer support group. We lead inpatient educational initiatives. And we've also started a post-ICU follow-up clinic and I share that with you because that  is how I've become connected to the people that I'm going to introduce you to today. So for those of you that are running programs, that want to run programs, it just  highlights how you can really make that human connection with your patients. And the patients can give back. And that's been such an important thing  for patients and family members to be able to do during their recovery journey. So this is Muriel. And back in 2016, she was preparing to enter a totally new phase of her life.  So she was preparing for retirement. She had been a dedicated pastor, a wife, and a mom to two sons. And she's a very avid outdoors woman. She loved to camp and hike.  They were always going out west and hiking the mountains. And they spent their entire summers outside, her and her husband. And as she was moving closer and closer to retirement,  she had a few nuisance medical conditions that really stood a chance of becoming a barrier for her to lead the kind of life that she was hoping for in retirement.  So in this early spring of 2016, Muriel underwent an elective surgical procedure. And it was shortly after that surgical procedure, during her early phase of recovery,  that she became terribly sick. She developed severe septic shock. And from the floor in the hospital where she was recovering, she was rushed to the ICU,  where she would spend the next 10 days, six of those completely comatose on full life-sustaining support and completely unaware of what was happening to her.  Next, I want to introduce you to Nathan. Nathan was just going about his life like any rambunctious four-year-old kid should be.  When he developed a really nagging nighttime cough, his parents would notice when he laid down at night, he would just cough, cough, cough, cough.  And his mom just had this feeling in her stomach, something is not right about that. So they took him to an outpatient appointment.  And at the persistence of his parents, he had a chest X-ray. And from that moment on, their lives have never been the same. It was late September of 2018 when  Nathan became one of the over 15,000 children every single year who was diagnosed with cancer. And he was diagnosed with non-Hodgkin's lymphoma  and had a very, very large mass in his chest that was causing his nighttime cough. His treatment started immediately, very rapidly. It was really intense.  And it was just all-consuming for him. He faced all of the treatment and all the challenges head-on. And the treatment was both miraculous but devastating at the same time.  If you've ever had the misfortune to witness anybody, but especially a child go through cancer treatments, you know what that looks like.  It's a miracle, but it's also awful at the same time. But just one week into his treatment, chest X-rays showed this mass was just shrinking.  It was just melting away before their eyes. And so Nathan's parents were able to breathe a big sigh of relief. And they looked at each other and they felt like  this was all going to be worth it. We've gone through some terrible things, but we know this is going to be worth it. This is really working for him.  And it was late last winter that they were just suddenly blindsided. Nathan had been admitted to the hospital and he woke up one morning and just told his mom,  mom, nothing in my body works. He actually contracted RSV. And that just caused him to become devastatingly ill. It was within five days of becoming sick.  He was admitted to the ICU and he grew just sicker and sicker by the day. Every breath he took became much more difficult and his need for support increased by the hour.  His face mask became OptiFlow. Then OptiFlow became CPAP and CPAP eventually became intubation. And soon that wasn't even enough. The traditional therapies that we use for RSV  and for respiratory failure just weren't working for him.  And a very difficult decision to place Nathan on ECMO  was made. And he also started an experimental drug to treat the RSV. His doctor said that this was the absolute worst case of RSV they had ever seen in their life.  And Nathan just clung to life. Nobody knew what the next minute was going to bring. Family was surrounding his bedside. There were prayer vigils held at the hospital  and everybody just waited.  I wanna pause Nathan and Muriel's stories just here for a second. I know their stories are harrowing and they're heroic. They're so real, but to many of us in the room,  hopefully they're unimaginable. You can't imagine experiencing something like this. But for every second of their experience was the simultaneous, desperate  and equally harrowing experience of their loved ones and their family members.  So along with introducing you to Nathan and Muriel today, I also wanna really intimately introduce you to their family members who were there with them at the bedside.  Specifically to Muriel's husband, Randy, and to Nathan's mom and dad, Becky and Andy.  So Randy has worked for many, many years as a hospital chaplain actually. So he was in a very unique position when he was at the bedside with Muriel in the ICU.  He's no stranger to being called to the bedside of sick and even dying patients. And many times he spent a lot of his time in the ICU.  But Muriel's critical illness was very different. Randy told me when we were talking about this that the sights and the sounds, the routine,  the terminology, the procedures, the equipment, all of that was familiar. But his role, like his most important role as her husband was suddenly completely different.  He told me I was no longer the husband who was the hospital chaplain, who was there to support her while she had routine surgery. Rather, I became her caregiver, decision maker  and advocate for many weeks to come.  And reflecting on their experience, he also shared with me that it was actually the 30 days of recovery past the ICU that were more difficult.  There were split shifts, Muriel needing one of us present with her almost all hours of the day. There was no day off as the caregiver.  Now, Becky and Andy, they were moving through life like any other husband and wife who are raising three young children, three young boys do.  They had the four-year-old twins, Nathan and Justin,  and their eight-year-old brother, Grant. Their lives were in constant motion, balancing the daily chaos and commotion, along with usual things like work  and your other life obligations. And that just all suddenly came to, it just froze upon learning about Nathan's diagnosis of non-Hodgkin's lymphoma.  Not even Andy's successful career as a physician assistant at Mayo Clinic, where he actually cares for oncology patients, could begin to prepare their family  for what they were about to endure.  The word despair is used over and over again when you read the journal writing that Becky and Andy did during some of the darkest hours of Nathan's hospitalization  and nothing quite captures the sentiment like Becky's plea one evening to get her son back. She shared, I miss my nene so much it hurts.  Everyone in our family feels the same pain and void. I just want to talk to him, snuggle him, take delight in his permanent smile, hug him, hold him, hear his voice again.  For now, I settle for creating a few inches of space amongst the endless tangle of tubes and lines attached to his body to get as close as I can to my little boy, just for a moment.  The families at the bedsides of our critically ill patients are carrying a weight so profound that it becomes difficult, if not impossible, for them to express that.  And it becomes even more difficult for many of us to sit with and acknowledge that. Oftentimes, loved ones find themselves walking a path of experiences and emotions  that they are unsure how to navigate. They have no choice but to keep putting one foot in front of the other without knowing where their next step is really going to land.  Caregivers find themselves in this constant tug-of-war with these emotions, right? So they have trust, gratitude, and hope, but yet on the other side of that,  they are battling fear, grief, anger, guilt, and despair.  For Muriel and her family, her path finally has eased. She did remain in the hospital for an additional 30 days after leaving the ICU and then spent some additional time  in a skilled nursing facility before finally making it home.  However, unfortunately, in 2017, she experienced another bout of severe septic shock, which landed her right back in the ICU, intubated on pressers, everything, all over again.  And the fear and memories and grief she experienced just came flooding back for her. But the second time around, she shared with me that she experienced something that was new  and she describes it as fiery anger.  And Randy recalls just being thrust back into the intensity of that full-time caregiver role since the first time around. But over the course of the past few years,  very fortunately, Muriel has steadily now moved forward. She's reflected and she's grown more patient and less judgmental of herself, is what she has shared with me.  She expresses an acceptance of this uninvited change in the course of her life that she just had not planned. Her health has continued to improve to near baseline  and she helps others now with deep care and guidance through participation in an online support group.  Muriel and Randy have since celebrated their 40th wedding anniversary. And Randy shared with us that we are both so grateful and thankful for the level of Muriel's recovery  and the full life she has today. Being able to experience life together with Muriel at this time is such a gift for me. The adjustments that have been made  in the past nearly four years in my life with Muriel have been made gladly and have not been a burden.  I love this.  Nathan gradually started showing long-awaited signs that he was responding to the support of care and the experimental medications.  The level of support to sustain his body began to decrease, all to the tremendous relief of his parents. And there he is with his Nintendo Switch.  After four weeks, he was finally able to be liberated from ECMO.  It was the hard work and the perseverance from his physical and occupational therapy teams and then the entire medical team that took care of him. It finally paid off.  Ultimately, he spent 86 days in the hospital. 65 of those days were spent in the ICU. 10 of those intubated and 28 of those days he was on ECMO. But he finally made it home.  And today, Nathan is a rambunctious five-year-old boy. So milestones like birthdays are momentous in a way that we really couldn't imagine them being.  His path has eased, but his challenges still remain. So the reality of childhood cancer is still with him. So lumbar punctures, hospitalizations, chemotherapy,  and he's still in the hospital. So all of those things are still a part of Nathan's life. But in addition to that, he is busy doing what other five-year-olds should be doing.  So he's playing with his brothers, jumping in waves, mining for icicles, and playing Super Mario Brothers. He really, truly is nothing short of amazing.  And the world is definitely brighter with his spark burning bright in it.  And as I conclude today, I really wanna share with you these words from Muriel. These just stopped me in my tracks when she shared them with us. But she says,  I snowshoed down the path I was sure I could not snowshoe up. The upward way was not as bad as I anticipated. I just did not look too far ahead to see what was ahead of me to climb.  Maybe I could remember this when I'm looking too far ahead while recovering. Instead, focus on the moment that is, one moment at a time.  I think it can be really easy for all of us to get really lost in the busyness, you know, in the life as a critical care provider. But Randy reminded me when we spoke  that when there's a lull in this storm for the patients and the families, to circle back. To circle back and connect with them and try to find a way to really know them  and to connect with them. And share with our patients Muriel's reminder that with one moment at a time, they can find the upward way and that we are there with them along the way,  along the path in the ICU and now in these new ways that we can reach back to them through follow-up clinics and support groups. We're with them to help them find that way.  So as I end today, I just wanna share my profound gratitude and awe to the Herber and the Hackfield families for allowing me to share their stories with all of you today.  Like I said at the beginning, it's really through sharing these stories that we learn so much and it's so powerful to connect back with our patients so we can share these  and get better every day in this work that we do. So again, a million thanks to them and a big cheers to their continued health and healing.  Thank you.  So we have the panel here for any questions. Thank you. Thank you. Awesome.  I've been a medical and surgical intensivist for 37 years  but I've also been a 41-year survivor of polycystic kidney disease, bilateral nephrectomy, sepsis three times, and a very successful kidney transplant 15 years ago  for which I'm extremely thankful.  For the last 10 years, I've been teaching musicians  who are themselves either survivors of critical illness or are interested from family experience in what families and patients are going through to come back to the bedside.  And you would think that with our collective stories, it would establish a bond early on. I've had patients with the exact same life story that I have.  And you would think, or you might think, that saying, oh, I know what you've been through would create an area of commonality. It doesn't. I don't know what they've been through.  They're going through their own experience of the illness. They are experiencing the most profound loneliness of their life. They are experiencing the most profound loss of power  of their life. They have individual things like economic issues and trauma patients that are overwhelming and that I'm not at all familiar with. And this is a wonderful undertaking.  But it's also an enormous undertaking and will involve elements of finding out each patient's story, readiness, support circle,  long-term plan. And the other thing that you have to remember is almost a third of our society is estimated to be refractory to talk therapy.  That's what my psychiatric colleagues tell me.  And so things like a bedside musician, art therapy, play therapy, survivors' choruses, all these things that are thought of as very soft  may in fact be integral parts of making this succeed. And I really applaud you for taking this on. We'll be glad to do anything to help.  I will put in a plug that two of our best musicians, the guy who wrote Waking the Spirit and the guy who's at the NIH with the Pain and Palliative Care Service  will be playing tomorrow from five to 7.30 in Winter Park 54 over in Hyatt. And you can come see and hear their stories. But they really approach every patient as an individual.  They look for individual music prescriptions, music stories, and patients are very vulnerable to them.  I've trained a couple of musicians who quite frankly never called me back and said they wanted to go to an ICU because they were so judgmental and so unprepared.  I'm not sure they would have been the right people. So the magnitude of what you're talking about here is really big, but this is a great thing to do. Thank you.  So let me turn to the panel and I think some really good points being raised. How do you develop a peer program in which you have empathy and understanding  that critical care is a diverse and heterogeneous group of experiences and how do you make that work on the ground?  You're asking me?  So I think on the ground is a challenge. I think one, you have to come into it from your operational healthcare system and figure out what works there.  And two, you have to come to that with no judgment. You can't come with preconceived notions about what's gonna work for the patient population. Because as this gentleman has said,  even though he is a critical care survivor, he understands that each patient's journey is unique and different. And so when developing the program,  you have to have some core pieces, as we talked about within enablers and barriers. There has to be some facilitation. There has to be some structure to it,  but that structure has to be mobile enough, I think, to work with each individual patient and what they are gonna need and what their needs are gonna be.  And so who are you using as facilitators at each of your programs?  I actually do not have a facilitator currently. Our facilitator, we don't use a model. Our model is we have a patient who, the patients come and are trained  through our patient experience office and return as volunteers to the ICU. And they do more of a peer support model within the ICU setting  instead of as a facilitated group afterwards. But many of the facilities do use facilitators. Annie at the Mayo, how do you facilitate? Yeah, so we have an online support group.  So we've moved ours fully online. And we have, I moderate, we have professional moderators on that platform as well.  And that we have found to be a really fantastic model for many reasons because we can reach, literally we've reached people across the globe.  But also it's like you were saying, talk therapy isn't for everybody. So not everybody wants to show up physically to a group and participate in that way. So in the online forum,  people are able to just read and read the shared experiences and learn from other people what other people have been through.  So that's been our experience with peer support. But I do wanna say when you were talking about music therapy, play therapy,  I think the adult world has a lot to learn from the pediatric world in that. So even like you saw the pictures that I shared of Nathan shooting hoops and playing games  and having to switch in his bed. I think we have a lot to learn in that way and to leverage our colleagues in therapy more. So we're very fortunate at Mayo Clinic  to have embedded PT and OT in our ICUs and to start that recovery process the moment they get there. And so our occupational therapists are individualizing that patient  and they are learning what is helpful for that specific person. And we can carry that throughout their recovery.  Can I just respond to that for a second? There's an important lesson for us all to learn from the rehab people who know that mastery of a new skill  offsets the loss of the illness or the old skill. So a friend of mine was amazed his 93-year-old father was a neurosurgeon, was learning to crochet.  And he couldn't get over his cognitively intact grandfather's fixation with crocheting. It's a new mastery. And so for a man who has lost power  over his whole life, is now very frail, the emotional import he attaches to that is major. And these are all things we have to learn about as we go forward with this.  But there is a lot out there in the rehab world that we need to learn from as we do this.  So let me also ask the panel, in terms of preparing or transitioning patients and families to be aware of resources after discharge, what have you found to be the most effective  or the most practical way to do that?  Well, I mean, at our site, we have a caregiver support center, actually, which has been super helpful in helping us design our peer support program,  which is about to start in a few weeks, actually, or maybe a week and a half. And so that's been helpful, I think, is to sort of work with institutional stakeholders like that sort.  Because I do think that the whole notion of it being so different for each family is really important. And I think in evidence-based medicine, we struggle with this concept, right,  of sort of really being that individualized.  Having said that, though, I do think that having a rigorous plan to start early and having flyers and really thinking of all of the different stakeholders,  because the patients are seeing so many different providers, the nurses post-ICU, the nurses in the ICU, the occupational therapists, and sort of like really breaking  through some of those silos, I think is sort of an easy challenge to kind of get right early. And then understanding your own institutional infrastructure  of sort of particularly around death and dying, because to be honest, even in the post-ICU world in which we think people are gonna survive, the death rates are high enough  that I think it's important to prepare for that construct early, because a lot of your survivors, even in peer support, are gonna end up either dying  or families are gonna be struggling with a death, and so being prepared for those things, I think, are probably the two most crucial things I can think of.  I think, too, an early mistake that many of us have made that have been doing this work is to talk about this with our families when they're in the ICU at length,  because it makes sense. We're there, they're there. We're gonna have these conversations. But I have personally found, and a lot of my colleagues that have been doing this work  have found that when you do that, and if you have the opportunity to then go to the floor and talk to them, oftentimes they'll have no idea who you are. I don't remember having  this conversation with you. What are you talking about? Not saying that you shouldn't have that and start that conversation in the ICU, but if you do, don't think,  oh, I had that conversation, they got it, and then walk away from it. Just assume they're not gonna remember anything you told them. So have a plan for follow-up,  whether it be on the floor or a phone call follow-up after they leave the hospital. We give a lot of physical materials. We give paper flyers to the patients  talking about the recovery clinic, talking about PICS, talking about their ICU stay, and we talk to the family members too, because oftentimes, as you said,  the patients have no memory of me even when they show up in clinic, even though I've talked to them on the phone, even though I saw them on the floor.  But if you connect with the family member or the caregiver who feels like you might offer some assistance to this burden that they're struggling with,  then sometimes that connection too can help. So we're gonna take one more, in the interest of time, take one more question, and then we're gonna have the panel  in the continue the conversation area across the hall, and I'll take that one more question. Hi, I'm a pediatric intensivist, and I'm just interested  because you presented two cases at Mayo, one was a pediatric patient. Are you guys doing your post-intensive care clinic? Are you seeing children as well?  I think it's hard in the neonatal ICU world has this great established mechanism for follow-up and pediatrics, we don't. And I don't- Where are you?  We're struggling with getting off the ground. And so I wondered if you guys had experienced success with pairing with your adult clinic. Where are you? Where are you working?  Vanderbilt. Vanderbilt, okay. Oh. Right, so we have a successful adult clinic. Oh, yeah. Yeah. Well, I know. I've already bought it. Talk to people here. So at Mayo, we,  the pediatric post-ICU clinic is launching on April 1st. So it will be separate, but we're working, we're working together very closely and we've had multiple conversations  over some time about what works for us and we're gonna continue those conversations. There is conversation about what happens when we identify a parent who is struggling.  Can we then send that parent to the adult post-ICU? So I think there's a lot of opportunity for collaboration there and to really share resources and share ideas  and to learn from one another. So that's our experience. And in our peer support collaborative, there's some innovators at, I think it's Oregon that's in the pediatric space.  And so I think certainly, there are innovators in the U.S. that are doing good work in these post-ICU clinics and in the peer support mechanisms.  So we can connect you with those as well. And a reminder for this group, tomorrow, Cairo, a lot of opportunities for everyone in the room to get involved  and to become a part of all of this work. So thank you all for coming.  I appreciate it. And we'll continue the conversation across the hall. Thank you.

Video Summary

The transcript describes a session on survivorship and caregiver burden in critical care. The session covers the experiences of patients and their families after critical illness, the challenges they face, and the support available to them. The speakers share the stories of two patients, Muriel and Nathan, who faced life-threatening illnesses and their families who supported them throughout their journeys. The speakers emphasize the importance of individualizing care and support for each patient and family, as every experience is unique. They discuss the potential benefits of peer support groups and other resources such as music therapy, art therapy, and play therapy. The importance of early intervention and support is highlighted, as well as the need to address the emotional and mental health aspects of survivorship. The panel also discusses the challenges of transitioning patients and families to resources after discharge, and the importance of follow-up and ongoing support. The session underscores the significance of connecting with patients and families, listening to their stories, and understanding their individual needs to provide effective support and care. Overall, the session emphasizes the need to humanize the ICU experience and improve the long-term outcomes and quality of life for critical care survivors and their families.

Asset Subtitle

Patient and Family Support, Quality and Patient Safety, 2020

Asset Caption

The Society of Critical Care Medicine's Critical Care Congress features internationally renowned faculty and content sessions highlighting the most up-to-date, evidence-based developments in critical care medicine. This is a presentation from the 2020 Critical Care Congress held February 16-19, 2020, in Orlando, Florida, USA.

Learning Objectives

Explore the measurement of disease outcomes in ICU survivors
Examine a survivor's journey to recovery
Discuss the growing problem of ICU recidivism and its economic impact

Post-ICU Programs: Barriers and Enablers to Implementing Key Mechanisms of Delivery

Ashley Montgomery-Yates

The Epidemiology and Societal Importance of Survivorship

Aluko Akini Hope

The Experience of Survivorship and Caregiver Burden Among Loved Ones

Annie B. Johnson

Meta Tag

Content Type Presentation

Knowledge Area Patient and Family Support

Knowledge Area Quality and Patient Safety

Knowledge Level Foundational

Knowledge Level Intermediate

Knowledge Level Advanced

Membership Level Select

Membership Level Professional

Membership Level Associate

Tag Rehabilitation Medicine

Tag Mortality

Year 2020

Keywords

survivorship

caregiver burden

critical care

patient experiences

family experiences

support for patients and families

peer support groups

music therapy

art therapy

transitioning after discharge

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