Hi. I'm going to talk for just the next few minutes on engaging families in decision-making in the ICU. So, as noted, I'm a PEDS intensivist, so my clinical experience is predominantly with children, obviously, but I think a lot of this stuff really crosses between all of the ICU environments. I have no conflicts of interest to disclose, and the views expressed are solely my own. What I'm going to be talking about is really based on my own personal experience over the last 25 years or so. For about 10 years, I worked at UC Davis and had the privilege of working with Dr. Jim Marson. And for those of you who know Dr. Marson, he's really one of the founders of ICU telemedicine, and it was really great working with him. We actually put telemedicine units in rural ERs, and we would help there. We ran some codes over telemedicine, published about that, developed a family and friends program where remote family and friends could actually come into patients' rooms over telemedicine units, and some really interesting work that we did there, and I learned a tremendous amount from him. And then for about 8 years, I worked for the U.S. Navy and had a lot of parents that would be deployed, so we would have one parent that would be in town and then the other parent that would be in Afghanistan or Iraq. And we would often need to make some very big decisions about these critically ill kids, and working with parents who truly could not be there in any way really informed a lot of this talk. So all of this really comes long before COVID, which is interesting because I think so much of it informed what we ended up doing during COVID. So barriers to excellent virtual decision-making. When loved ones can't be physically present at the bedside, they often lack understanding of what's really going on. And remote-only family members are often overly optimistic of prognosis, and we see this over and over again. Not being physically present often leads to the patient's critical illness not feeling real to family and friends, right? And often there's technical difficulties, like hearing all the participants, seeing who's in the room. So we're going to talk about some ways of overcoming some of these barriers. So I'm going to talk a little bit about some of the technical things that we need to think about. So from the ICU side, we need reliable, fast connections. This is less of an issue these days, but it can still be a pretty significant issue in a lot of places, especially in more rural hospitals. When we think about having a conference room, we often don't have enough microphones around, and I think we've all learned that from being in committee meetings where you can't really hear the people who are in the room so well. So we need to think about that and have microphones all around that conference room so that family members can really hear everything that's being discussed, no matter who's saying it, and hear clearly. Often helpful to have multiple laptops or tablets or cameras so that family can see everyone that's in the room. Sometimes folks just have a single camera up on the ceiling mount that looks down into the conference room. From a family's perspective, that doesn't work really well, because you can't see people's faces. And one of the things we know from families is that it's very important to them to see our faces, and also to have us see their faces, because that's how they really connect with us. So having multiple cameras around the room, or everybody having their own laptops so that there's a camera facing them directly can actually be very powerful for families. Having the ability to show pictures, like CTs, MRIs, x-rays, photos of lesions, all those kinds of things, if you would show that during an in-person meeting, we want to have the ability to show that remotely as well. And I can't stress enough being mindful of time zone issues, and I see this come up quite frequently. This was obviously a huge issue when we would have family members that were in Afghanistan or Iraq really trying to figure out what time of day can we get not only all of the folks who need to be in the meeting at the ICU to be there, but what time will work for those family members as well. So thinking about that. Treating family meetings just like we would treat an in-person family meeting. So introducing everyone in the room. Having someone else hold your phone or pager, this is key, right? So that you hand off your phone or pager. Yeah, I'm old now, but I'll continue to. Sitting down so that people feel like you're really present, not looking at your watch. Calling the patient by his or her name and getting that name right. Super important. Getting the names and relationships of everyone on the family side and calling them by name as well so that we try not to refer to people as the mother or the brother or the sister or the wife, but actually calling them by name allows family members to feel like we're really connecting with them. That's very important. And not being rushed. And then there's lots of technical issues from the family side as well. They also need a fast and reliable connection. It was interesting because our first speaker talked about one of the statements being that it's hard if you're on the phone. And I hear that over and over and over again. Family members that try and do these conferences using their smartphones, it really doesn't work. Because the screen's too small and if there's multiple different people talking, they can't see who's talking or they're not sure who's who and they can't see multiple people. So encouraging folks to actually have a laptop or a tablet, preferably with a fairly good sized monitor, so that they can actually see different people at the same time becomes very important. Maybe better to have family spread out, so only a few members per laptop or tablet so that they're not all huddled around a single screen. And of course family members may need technical assistance to set up the video conference. So one of the things that we've tried to do over the years is actually have one of our IT people conference in with them before we start the big family meeting. And that can be extremely helpful, but you also have to be really careful. Because if the IT people call in with them 15 minutes in advance, but it only takes 5 minutes to set everything up and the family ends up waiting for 10 minutes for everyone else to get on the call, it's actually incredibly frustrating for them to wait those 10 minutes for us. And so figuring out ways of being flexible with our time so that we can meet the family where they need to be. And always remembering, as stressed out as we are working in the ICU, the family is way more stressed out. So switching our schedules to meet their needs can be very important. Getting the family in the patient's room can be extremely important, so that we can connect patient family members with their patients so that they can really see what's going on. If a patient's participating in decision making, then the patient decides who else is privy to the information and who can participate in decision making. But if the patient's not able to participate in decision making, the family needs to see the patient to get the best understanding of the situation and the prognosis. And think about it. In the ICU, families often spend hours sitting at the bedside, right? That's how they get to understand what their loved one's situation is like. When it's remote and they just call in, if they're only seeing that patient for five or ten minutes, it's much less impactful. So one of the things that we've found to be very helpful is we'll actually set up continuous videos into the patient's room so that families can just call in at any time and check in on their loved one. They can do it from their smartphone and just look in and see, hey, I'm going to look at this live feed. And as long as it's through a HIPAA-compliant system, that's okay. And it can be very helpful because that way, not only do families feel better because they have better access to their loved one, but the illness starts to feel much more real because they're seeing it on an ongoing basis and seeing it's not just a snapshot in time that my loved one is really very sick. But every time I'm checking in, this is what I'm seeing going on. And then they can also see what great care we're providing to their loved one, which lets them feel a lot better about the care that their loved one is getting. It's important to think about that family members often feel a lot of guilt if they can't be at the bedside. And we hear that a lot. And guilt can really complicate decision-making. So in general, we ask people to use substituted judgment, right? So what do you think your loved one would say if they could speak for themselves in this situation? And if we can't do that, then we ask them to use the best interest standard. What do you think is in the best interest of your loved one? The problem is if family members are feeling guilt, those kinds of ways of making decisions become very difficult. And we see that often family members who feel guilt either consciously or subconsciously start basing decisions on their own interests rather than the best interest of their loved one. So that's something to really think about and be careful about. When we look at how is it that people want to make decisions for their critically ill loved ones, there sadly isn't a ton of great data, but these are three fantastic studies. So the Johnson study looked at three different ICUs in the San Francisco Bay Area, actually. The Madrigal study looked in a NICU at CHOP and asked about decision-making for the most difficult decision that parents had to make. And then the Weiss study looked at NICU decision-making in a whole host of scenarios, and this is just looking at the withdrawal of life-sustaining treatment responses. And so what we see is that there's really a spread, right? Some people, some surrogates or parents, want to make decisions on their own. A lot want the provider to make a recommendation, and then the parent or surrogate makes the decision. The highest numbers we see is around sharing responsibility for decision-making. And then interestingly, a non-trivial amount want the physician to decide after considering the family's opinions. And there are a serious number of people who want the physician to just decide independently, and these are all for value-laden decisions like withdrawal of life-sustaining treatment. So when we think about that, we can think about decision-making as a continuum. So on the far left side of the slide, we have patient or agent-driven decision-making, where the patient or agent carries the complete burden of decision-making. In the middle, we have an equal partners approach, where there's sort of a 50-50 split in the burden of decision-making and the responsibility. And then on the far right side, we see a physician-driven decision-making model, where the physician bears sole responsibility for that decision. And then if we plot the responses, what we see is we see this sort of curve where we have about 15 percent on both ends of the spectrum who either want patient or agent-driven or if we move the physician-driven over to informed non-dissent, we have about 15 percent that prefer informed non-dissent. And then 35 to 40 wanting physician recommendation or an equal partners approach. And so this is fairly consistent in the data and interesting. So when we think about informed non-dissent, here's a bunch of readings on it if you want to learn more about it, and you can check on the SCCM website to get all of these. But when we start thinking about the effects of remote decision-making, we see that truly sharing in decision-making becomes more difficult. And so family members tend to move to the extremes. So in some times, we see that family members try to take on a lot more control in decision-making because they're feeling removed from the patient and so they want more control and this is a way of exercising control. That can be difficult, especially when family members are making decisions again based on their own interests rather than the best interests of the patient. But what we also see is the other side where some folks move more towards informed non-dissent and actually start wanting the provider and the ICU team to take on more of the burden of decision-making. And I should note that SCCM and ATS have officially endorsed informed non-dissent as an ethically supportable model of decision-making. And we can talk more about that if folks want and what that looks like. But it's important to realize that from the ICU provider's perspective, when the family isn't around and they don't feel quite as engaged, informed non-dissent can feel like a really reasonable thing to do because you're feeling like, well, I know this patient much better. I'm the one who's in the room all the time. And so we can see that sometimes providers will even encourage folks to move more towards informed non-dissent, which can be really problematic because the problems with informed non-dissent are very real where we can really co-opt the authority of decision-making when that's not appropriate. And so being very careful about that becomes important because we can really disempower families. So we need to be very careful. So we may need to spend a lot of extra time informing families, helping them understand the patient's condition to support them in being active in the decision-making process, particularly when we're talking about remote decision-making. And with that, I will end. Thank you all very much.

engaging families

ICU

remote communication

technical considerations

virtual family meetings