Excellent, thank you all for coming. So thank you for the introduction. My name is Tim Amos, I'm at the University of Colorado. I have no conflicts of interest to disclose today. I have three objectives for this talk today. First, I'd like to define the impact of having a family member admitted to the ICU prior to the pandemic, when in-person visitation and participation were the normal experience. And just to pause the talk this morning, the plenary speech, I thought a lot of what I'm going to speak about came through in their talk. So if you were at that great talk, hopefully some of this rings familiar. Second, I'd like to define the impact of the rapid transition to primarily virtual communication for these family members with a focus on those with patients at the end of life. And then finally, offer some recommendations to improve virtual communication when it's necessary, learn from the voices of those who experienced it during the pandemic. So first, prior to the pandemic. What we know from more than a decade of research is that family members of ICU patients are at high risk for a variety of stress symptoms. In fact, it's been coined in about 2012 as post-intensive care syndrome family, or PICS-F. And this can include post-traumatic stress, anxiety, depression, complicated grief. The prevalence of these symptoms really has ranged quite widely, has landed between about 15 to 30%, depending on what study and what country you're looking in. And historical rates into the sort of early part of this century, 2007 or so, as high as almost 70% of family members, three to six months after their loved one's ICU stay, still having some complex stress-related symptoms. Studies which had focused on engaging or allowing the family to engage at the bedside and participate in the care of the patient have shown a signal of reduction in these stress symptoms. And I'd like to show a couple of those studies now. First, and this is, I think, really a landmark study from 2007 in the New England Journal of Medicine from the French group led by Elie Azoulay, excuse me, and Dr. Lautrette and Nancy Kentish-Barnes. And this intervention in 2007 identified that family members in France were suffering from really high levels of stress-related disorders. And a very simple intervention, which was giving them an ICU brochure to describe what the process is around the dying process in the ICU, and then coaching to the physician providers about how to handle the end-of-life meeting, which was mostly be quiet and listen, let them express themselves and what their needs are and their patient's needs are, had pretty dramatic impacts. And what you see here is all anxiety, depression, and PTSD were statistically and clinically reduced. Again, I'd point to the really high prevalence of all these symptoms at that time, all at about 60% or higher, but they all reduced into the sort of 40 to 30% range by just allowing the family member to express themselves and giving them a little bit more knowledge about what the process will be. Building on this, and actually right prior to the pandemic, in February of 2020, we published this paper where we sought to allow families to engage at the bedside in a way that they might, as though they were taking care of their loved one at home. And we called this Family Care Rituals in the ICU. So not a randomized study, but it was a before and after where we offered them a brochure and said, in the ICU, you are allowed to hold their hand. You can bring in pictures. You can do that sort of thing. Bring in their favorite food so they smell the aroma, play their music, things like that. And what we saw, the hollow squares there, is the intervention group, statistically significant increase in family engagement at the bedside in all of our domains, and really clinically significant in a few, the personal care. So participating in mouth care for an intubated patient, combing their hair, sight, bringing in pictures. But I point to touch, prior to this intervention, only about 30% of patients were even, excuse me, family members, were even holding the patient's hand when they were critically ill and at the end of life. And these were all patients who had a physician predicted mortality of greater than 30%, so very ill patients, people on ECMO, dialysis, et cetera. And the family members described a lot of fear about not wanting to mess something up. And so the education around, it's okay to hold their hand, was really profound for them, and striking to me that we needed to do that education. But you see a dramatic increase in that. And with that, we saw a statistically significant reduction in PTSD from about 40% down to about 25%. And a non-statistical change in depression and anxiety. And again, these were at three and six month time points. And so just that semblance of control seemed to be really important to those family members and allowed them, by participating at the bedside, to perhaps protect themselves from some of the stress-related disorders that are to come. Given this literature and a whole body of literature, the Society of Critical Care Medicine actually has published guidelines on this. And what they say, and this is just an excerpt from it, is that family members of critically ill patients be offered open or flexible family presence at the bedside that meets their needs while providing support, staff, and positive reinforcement to the staff. A lot of nurse and physician education that it's okay to have the family member do these things. To work in partnership with families to improve their satisfaction. Family members of critically ill patients be offered the option of participating in interdisciplinary team rounds to improve their satisfaction with communication and their understanding of the process. And then family members of critically ill patients be offered the option of being present during resuscitation efforts with a staff member assigned to support the family. Again, as a side, that plenary speech where Ms. Flannery was talking about the first responders and someone was assigned to her and talking through what they were doing, that really resonates with this and I think is really valuable. But of course, then comes COVID-19, right? And no longer can any of this bedside engagement happen. So what did this mean for the family members during the pandemic? That same group that I mentioned before in France published this in JAMA, where they compared symptoms of post-traumatic stress disorder in those with COVID-19 ARDS and those without COVID-19 ARDS, the family members of those patients. And what they saw was a statistically, significantly higher degree of PTSD symptoms, anxiety symptoms and depression symptoms in those family members of those with COVID ARDS in which there was also a much higher mortality rate. So in those that were dying more, there was more of these symptoms. And I'll point to the PTSD symptoms, which is the IESR score on the right. They were very high in both groups. We then also published this in a trial here in the US. This was an observational cohort and it was a mixed methods study. And so I will include some of the family members quotes here between this and another qualitative study, which can be upsetting for those of us who provided care during the pandemic. So I apologize, but I also think they're really important to understand what the family members experience was. But what we saw in this, we surveyed family members in three and six months for this paper. And we saw that the rates of PTSD symptoms in the family members were up again near that 2007 level where PTSD symptoms at six months were about 64%. And at six months, they were still about 50% of the family members with significant symptoms of PTSD. We used the IES-6. There were also quite elevated scores of anxiety and depression. When we talked to them and looked at the qualitative coding patterns and differences between the two groups, which we defined as high IES scores or low IES scores, I want to point to three things. One, those with the high IES scores greater than or equal to 10, more common, excuse me, less commonly identified positive emotions, including appreciation for the healthcare team, relief, confidence and trusting in the healthcare team. They more frequently discussed distrust or not taking the clinician's word at face value. And then they more frequently identified ineffective communication, including mixed messages, information gaps, distrust, pressure decision-making and logistical and technical barriers, right? How do I get the iPad on or my wifi went down or whatever those may be. So we learned that during the pandemic, and there's a whole body of literature to support all of this, that it is a very stressful phenomenon to not be able to be there at the bedside. And we again heard that this morning. And so recommendations for virtual communication. And this came out early in the pandemic when it was in the Journal of Pain and Symptom Management by Dr. Hart and group. And it was trying to target what we've learned pre-pandemic and rapidly transition it into the pandemic. And how do we provide family-centered care during this era? And this chart from there, I thought was very important. And I want to point out a couple of things that really hit on the sort of notions of individual's autonomy, self-expression and the desire for control through this. And that was to define and document the plan for the family contact, including who is the responsible clinical team member who would be contacting them on a daily basis, to have daily video or telephone contact with this primary family member, and then clearly communicate and reiterate the role of the clinical team member contacting the family, including when obtaining consent, and then promote consistency with whom contacts them. And if you remember from the previous slide, while this recommendation in there, again, for those of us providing care, especially in the early days of the pandemic, this was very, very difficult to be able to do. And we didn't see families sort of reflecting to us that we were activating this. To further support that with Dr., it's Hach and Donor here, but now Dr. Duda, who's in the room, we published this in the Annals of ATS, which was a qualitative study looking at the family member's experience and suggestions regarding the care of critically ill patients. And from this, I think we can get some real good recommendations on how to provide care virtually, because these are the voices of those who experienced it firsthand from a cohort across the country. There was New England, the South, sort of Colorado, and then the Pacific Northwest as well. Some quotes from them is, we learned that family members yearned for physical touch to show their support. We were there on video, but we were not physically there for him. That was the hardest part of being there in that room, but you can't even hold his hand for five minutes, and that's all I was asking. They felt inconsistent or irregular timing of daily updates generated significant stress and anxiety. I'm kind of going blindly by the phone, and I'm waiting for the call. I spent my whole day waiting for three minutes, keeping things clear. I told people, don't call me. I'm waiting for the call. So further isolating themselves, just in anticipation or stress around, when is the team gonna call them? But from this paper, the themes of what we coined the three Cs came to us, and these are contact, consistency, and compassion. And these are things that I'll go through here in a minute that I think from their voices and the sort of understanding of the literature really can inform us on how to communicate with people who can't be there at the bedside. So these are adopted from Dr. Duda and Dr. VanSkooij who couldn't be here today. But if you look at contact, what they were asking for was at least daily phone updates. It didn't have to be video. Incorporate video conferencing, but it didn't have to be more than weekly and really to the patient or family member's preference. Assess the family's preference for timing, frequency, and what platform they would like. So really engaging them, giving them some control on how we communicate with them. And then, yeah, improve availability of staff, right? We all have extra staff around, but improve the availability of staff to field calls when the family members call in at non-scheduled times for an update. And then consistency, create a family call schedule with a tight time window and stick to it to the point of not having them wait all day long for us to call in, but instead knowing when so they could plan and continue to live their lives. And then provide staff available to contact the family should a change happens, right? We're all critical care providers. Things can't always go exactly as we plan, but to let them know if something needs to change. And then finally, compassion, and this one really resonates with me around the family care rituals, but really trying to provide personalized information. We heard their voices again and again of, do you even know my patient who's in that bed, right? Like you're calling, telling me they're not doing well. You know, people saying they said they had to pull the plug because he wasn't gonna make it, right? And it's like, do they even know my loved one? Describe and show the care that they're receiving. And I think we've all seen through both social media and the national media, a lot of attention to this, where story after story of people bringing music into the room or taking the iPad in there and showing them what was going on. That was really meaningful to families when they wanted it. And then offer creative means for family presence in the room, photos, messages, notes, et cetera. And in this qualitative paper, this really came out as something called above and beyond acts of compassion, which sounds perhaps dramatic, but what the families identified as above and beyond was, hey, why don't you email me a picture of their favorite place and I'll put it up on the wall or email me a picture of your family and I'll put it up on the wall. And that was extremely meaningful to the families. It showed that we cared and we wanted to participate with them in helping to care for their loved one, even at the end of life. And so with this, we also looked at or created this flow chart of how this impacts family members, right? And in the center there, you see family isolation, right? And whether this is due to the pandemic or other isolation factors, childcare, their work schedule, they live remotely, they can't be there for whatever reason. I think this plays a role, right? They're isolated away from their sick loved one at their loved one's time of greatest need. They can't be there. They have guilt and decisional conflict around this. They can't advocate in the same way. And they lack that physical touch, which for some families is extremely important. And this can lead to stress. And then I think the factors that we can control, the clinician factors, do we engage in these three Cs? Are we reaching the family, allowing them to contact us in a way that allows their autonomy and some sense of control? Do we show that we're caring for them or do we not? And if we don't, it really leads to a fractured therapeutic relationship, which can have long standing impacts on that family member's connection to care for the future and their ability to function in their own daily lives. The gratitude for healthcare workers, and I think it's important to just sort of caveat that we've had this done in the first three months of the pandemic. There was a lot of that gratitude and a lot of the societal discourse was very much coming up. There was George Floyd and the Black Lives Matter happening at the same time as this. And so there was a lot going on there that may have exacerbated some of the stress we see. But I think even removing that, understanding this is a very stressful time, hearing that talk this morning about how stressful it was for a loved one to be stuck at home. I think this really does apply for that. So these are my references. And with that, thank you. I'll look forward to questions at the end. Thank you.

COVID-19

virtual communication

ICU patients

family members

stress symptoms