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Clinicians aim to communicate with surrogates of ICU patients in ways that both inform them of the patient’s medical condition and support their emotional needs. Written communication, as a supplement to traditional verbal communication, may overcome some of the challenges that clinicians face when engaging with families in the ICU. Diane C. McLaughlin, DNP, AGACNP-BC, CCRN, FCCM, is joined by Jared Greenberg, MD, MSc, to discuss the article “Daily Written Care Summaries for Families of Critically Ill Patients: A Randomized Controlled Trial,” published in the September 2022 issue of Critical Care Medicine (Greenberg J, et al. Crit Care Med. 2022;50:1296-1305). Dr. Greenberg is assistant professor of internal medicine in the Division of Pulmonary, Critical Care and Sleep Medicine at Rush University Medical Center in Chicago, Illinois. This podcast is sponsored by Sound Physicians.
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Transcript:
This podcast is sponsored by Sound Physicians, the employer of choice for critical care physicians, where we seek to transform acute episodes of care. At Sound Physicians, we ensure physicians have the time and resources needed to deliver compassionate care that measurably improves quality and lowers the cost of healthcare for patients in the communities we serve. For more information, please visit careers.soundphysicians.com.
Dr. McLaughlin: Hello and welcome to the Society of Critical Care Medicine Podcast. I’m your host, Diane McLaughlin. Today, I’ll be speaking with Dr. Jared Greenberg and we’ll be talking about the Critical Care Medicine article, “Daily Written Care Summaries for Families of Critically Ill Patients: A Randomized Controlled Trial.” To access the full article, visit ccmjournal.org. Dr. Greenberg is an assistant professor in the Department of Internal Medicine, Division of Pulmonary Critical Care and Sleep Medicine, at Rush Medical College in Chicago, Illinois. Welcome, Dr. Greenberg. Before we start, do you have any disclosures to report?
Dr. Greenberg: No disclosures to report. Thank you for having me.
Dr. McLaughlin: This was actually a great article to read because there have been a lot of issues over the last two years about communication with families, particularly during the pandemic. But this idea actually originated before the pandemic, is that correct?
Dr. Greenberg: That’s correct.
Dr. McLaughlin: What prompted looking at communication with families?
Dr. Greenberg: I’ve been always interested in when patients are transitioning from the acute phase to chronic phase of critical illness, the challenges that come with making decisions from the family standpoint and also the challenges that clinicians have in helping families make decisions. I initially started out thinking about how we could help families make decisions at this point in the stay. With a group, we devised a team-based approach to provide communication on just what chronic critical illness is, where we had multiple ICU specialists meet with family members around the time that families were deciding on tracheostomy, just to tell them about the challenges that come with recovery from critical illness and help them make decisions.
What we realized during this study is that, first, families were very interested in this type of intervention. While the team might be talking to one family member throughout the ICU stay, this family member would often bring multiple family members to this meeting to talk about the patient. But as we were trying to give family members information about what to expect in the future, we noticed that families were asking a lot of questions about what happened during the ICU stay, suggesting to us that families really weren’t processing what the team was telling them and that was really impairing their ability to make decisions at that point in the stay. Also, when we were asking clinicians to talk to family members about making decisions, the quality of communication was often variable.
So I started to think about ways that we can improve some of these communication issues. I noticed that, in the outpatient setting, at the end of a visit, you don’t expect that the family or that the patient remembered everything that you said or understood everything that you said. Or maybe when they go home, they might have other family members that would be interested in what happened during that visit. To overcome this challenge, we often will write a summary of what happened during the visit so they can remember what happened and share that with their family. I thought something similar could be used in the intensive care unit where you summarize what is discussed during the rounding process and provide that to a family to reference throughout the ICU stay for that day.
Dr. McLaughlin: Was the voice of this communication typically one main communicator? I know that the language was standardized, but were there any issues with different messages by different providers?
Dr. Greenberg: We actually did a pilot study a couple years ago, and we realized pretty quickly that we weren’t going to get a lot of buy-in from clinicians to start writing their thoughts for the day for families, both in terms of change of practice and the time that would take. So we decided that a study investigator would be the one who would be providing the communication, both to standardize the process and also to make sure that families received it at a reasonable time each day.
Dr. McLaughlin: Was there a specific time of day that families were told to expect the communication by?
Dr. Greenberg: It was usually during the afternoon because that gave us enough time to hear what happened during rounds and see what the plan was for the day. Sometimes based on a specific day or other things going on, it would happen later. We often let family members know to expect something later.
Dr. McLaughlin: Did you find more of your participants wanted email communication or written communication?
Dr. Greenberg: Most wanted email. Even if they didn’t have direct access to a computer, most could view the email on their phone. It also made it much easier for participants to share with other family members, which I think was one of the main benefits of the intervention. During the COVID pandemic, there was restricted visitation at our hospital, which necessitated that families receive it by email because they weren’t able to come in and get a hard copy.
Dr. McLaughlin: How else did the COVID pandemic change the trajectory of your study?
Dr. Greenberg: Before the pandemic, we had enrolled about a hundred people, which was about a third to a half of the projected number of participants, and we were enrolling about 10 participants per month. Then, when COVID happened, there were just much more patients who met our inclusion criteria, which had to do with being a non-decisional patient, being on a mechanical ventilator, and having a high risk of mortality. During the height of the pandemic in Chicago, we were enrolling about 30 to 40 patients per month. When we would approach family members to participate, they seemed to be much more stressed in general, just in terms of the uncertainty with the pandemic and having their loved one in the hospital, and not being able to see them. Because they were unable to come in, they weren’t able to meet the team, talk directly to the team, be with the patient. So I think they found it much more comforting and important than they might have if they were able to be present as much as they wanted.
Dr. McLaughlin: I have to tell you, I wish that we had been part of this study because, during COVID, we were having to do daily afternoon calls to family members, and it was highly variable dependent upon who was on that day. Something like this I could see really being beneficial. When I initially read it, I thought it was completely related to the pandemic. It was interesting that the idea actually was born prior to that.
Dr. Greenberg: Yeah. Even before the pandemic, we were finding that families couldn’t always come in as often as they wanted if they work or have different responsibilities during the day. During rounds we’d say, Well, who is the family member? And then the nurse would say, Well, the family member always comes in at night. And if they come in at night, they really can’t participate in rounds with the team. They can’t meet the consultants. So there is a large group of family members that, even before the pandemic, were not able to be present during the day as much as they would have wanted.
Dr. McLaughlin: Or even rotating family members that might be getting different information or spreading different information. So it’s nice that there’s a standardized process. Do you feel like this decreased the amount of questions that family members had regarding the care of the loved one?
Dr. Greenberg: I think one of the limitations of this study is that we didn’t really get a good impression of how the clinicians were viewing the intervention. We provided access to all of the written communication throughout the stay on the patient’s chart. But we didn’t know if they were actually reviewing this or using it in their communication with the family. We do know, by talking to the family members who participated in the study, that they felt much more comfortable talking with the clinicians, felt that they asked more informed questions. Sometimes, based on how late it might be that the clinician actually called, the family will receive the written communication first, so they would be looking at that document as the clinician was talking to them, and they actually found that to be just as helpful as receiving the document after the clinician called them.
Dr. McLaughlin: One of the things that has come up specifically with ICU diaries, which obviously is a little bit different, are some of the legal considerations. Since this was health information being emailed, did you encrypt the information?
Dr. Greenberg: The information was sent from our site via secure email. We made sure that in all of the written communication, there wasn’t any protected health information. It was all very general about problems that the patient had. It was all types of information that the clinicians would be telling the family members on a daily basis, and everything was also in the medical record. My personal opinion in talking to family members about this study is that they felt being part of it developed trust between themselves and the ICU team, and even if something went unexpected, they felt that the openness of the communication made it probably less likely that they’d be upset with the treating team.
Dr. McLaughlin: The other thing to keep in mind that they did consent to be a part of the study and were aware of how the communication was going to be delivered.
Dr. Greenberg: Correct. All of the patients at the time of enrollment were not decisional so the families were responsible for making decisions and receiving information. For patients that did become decisional during the process, we let them know about the study. Even in that case, when the patient did become decisional, the families were also often still wanting and receiving information from the medical team.
Dr. McLaughlin: Are you still utilizing these updates?
Dr. Greenberg: I think at this point we found that, for most family members, they appreciate getting communication in this way. The main challenge that we’ve discovered is how could this be implemented and in what settings should it be implemented? In the study, we found that family members that seemed to most benefit were the ones that had patients that had been in the ICU for over a week, maybe even two weeks. So, would it be better to focus on the patients that are very sick and start providing the families with updates maybe later in the course, or should one cast a wider net and provide these updates to all families and know that, for a lot of them, maybe that would be unnecessary?
So we focus our attention at this point on figuring out ways to make this process more acceptable to clinicians and having them be involved in the process, with the idea being that, while there might be a little bit of time spent providing the written communication, they might find communicating with families to actually be easier or, in these difficult situations where families are struggling to make decisions, they might find that families make decisions more easily and that those meetings go more smoothly.
Dr. McLaughlin: What were the indicators in the study that demonstrated that more chronically critically ill patients and family members may have benefited more?
Dr. Greenberg: Upon enrollment, participants completed three different surveys: the Critical Care Family Needs Inventory Scale; the Hospital Anxiety and Depression Scale, which has anxiety and depression subscales; and the Impact of Events Revised Scale. Upon enrollment, prior to randomization, the scores on these surveys were the same between participants assigned to the intervention and control groups. By the first week after enrollment, there still weren’t any significant differences in scores between participants in the intervention and control groups. But by the second time point, which is the second week after enrollment, there were significant improvements in the Critical Care Family Needs Inventory Scale, which is a measure of satisfaction, and also the anxiety and depression subscale components of the Hospital Anxiety and Depression Scale, suggesting that it’s really at this later time point that families are starting to feel that this was really impacting their experience and then perhaps also that they’re learning how to use written communication to improve their experience.
Dr. McLaughlin: What do you attribute that to? I guess I would have expected, early on, when patients are more critically ill and more unstable, that more communication would have been useful. Do you feel like, once they get to that chronically critically ill stage, it can be more confusing as to why the patient’s still in the ICU and what’s happening?
Dr. Greenberg: I think that families probably have different needs as the ICU progresses. Early in the stay, particularly if someone is doing well and recovering, families may not need as much information from the team, but it’s really as time passes and there’s a question about whether the patient may or may not survive, I think that they really need information and support to make these difficult decisions.
Dr. McLaughlin: Did you get a chance to personally follow up with any of the participants?
Dr. Greenberg: As an offshoot of this project, because a lot of the families participated during the COVID pandemic and we saw that changes in hospital policies and just the stress of living through a pandemic was so impactful for families, we started a follow-up study where we called family members who participated in the study and asked about their experiences, challenges they faced, both during the ICU stay and after the ICU stay, and ways they were coping.
Dr. McLaughlin: Do you have an exemplar of maybe somebody that stood out to you as to why this is such important work? We all have one of those patients that stick out to us as somebody that, the family was struggling or the patient wasn’t doing well. I could see how, during this study, sending that communication could make such a big difference.
Dr. Greenberg: There was a family member of a patient that just kept coming back and forth to the ICU and it was often hard to see that they were actually improving. At one point, in communication with them, I suggested that they look back at summaries from the previous stay and they could see that a lot of the things that the patient was struggling with early on, I think it was helpful in terms of tracking the patient’s progress throughout the stay. In talking to family members after the ICU stay, for patients that had survived and maybe were depressed that their condition had worsened from before their time in the ICU, I did suggest that maybe they could look at some of these summaries similar to what an ICU diary would be, to know that they had overcome so much and the fact that they’re doing as well as they are at that moment should be a sign of optimism.
Dr. McLaughlin: That’s a great point. I always tell families about what I call the ICU dance, that it feels like one step forward, two steps back, but overall you’re still making progress. But to have that written record would be very useful to actually see it, particularly when, during COVID, they weren’t laying eyes on the patient.
Dr. Greenberg: Yeah. I think something I’ve learned during this whole process of providing information to families is that clinicians and families view information in very different ways. I think, as an ICU physician, every day you have a list of ideas and things that you think could be causing a specific problem, and you’re looking to determine what tests should you do in order to narrow down your differential diagnosis and what signs are you looking for to say that somebody’s improving. But for family members, they don’t really have a context for all of this. So I think that a lot of them just inherently feel that the patients are going to get better when they may be looking for information from different providers that confirms that feeling. Something that the written communication does is that it lets families see how clinicians are thinking about a problem. Some feedback I got from family members is, I wish you included vital signs. I wish you included the white blood cell count. What I try to tell families is that these are important, but they’re part of a bigger picture and that the purpose of the written communication is really to show the family how the clinician is thinking about the overall problems and what they’re focused on.
Dr. McLaughlin: I really love that point, that it’s not a specific data point that we’re watching, it’s the combination of all of these things that give us an indication as to how the patient’s doing, which I think is difficult for families to grasp.
Dr. Greenberg: Yeah, definitely. I think the frustrations I often have when I’m seeing patients is that we’ll be trying to tell the family that maybe the patient is not doing as well or that this is the main problem, and then a consultant will come in and talk to the family and they’ll be very focused on their specific organ system and maybe that is actually getting better and the family then gets mixed messages or a family member in the room is not the same family member that was participating in rounds or talking to us. Then these family members will talk to each other and be very confused. So I think that the written communication is a way for all family members to be on the same page and for the clinicians to say, These are really the main problems and this is what we’re looking for to say that someone is getting better or not.
Dr. McLaughlin: Did you notice any change in the amount of patients that ended up undergoing tracheostomy?
Dr. Greenberg: As secondary outcomes, we did look at patient outcomes and there wasn’t a difference in those tracheostomies discharged to long-term acute care hospitals or death. I do wonder if the fact that a lot of these patients were enrolled during the COVID pandemic impacted that because a lot of these patients with COVID were younger and previously relatively healthy. I think that did impact how families did end up making decisions for patients.
Dr. McLaughlin: Actually, that’s one of the things that I really liked about your study, is that it included both quantitative and qualitative data. What do you think you’ll be looking for moving forward, since it sounds like there are plans to still follow this?
Dr. Greenberg: Something I like about this study or this field is that, when I would reach out to family members to participate, they immediately saw the benefit. They could think that the challenges that they were facing, keeping track of information or talking to the team or talking to other family members, and saw that this would be beneficial. Some of them even told me that they thought this would be a good idea and wondering why no one was doing it. So I think, clearly, family members benefit from this. The real question is, how can you change how clinicians feel about providing written communication, and how can you implement it in a way that they feel improves the family experience but also maybe makes their job easier as well?
Dr. McLaughlin: What are your plans for this study moving forward?
Dr. Greenberg: We’re working on a process where clinicians can initiate the written communication with families and that maybe this information would be stored in a communal area that nurses or other people could see what’s in the space. Then, in the context of a research study, a study investigator might organize the information for the clinicians and then provide it to the clinicians to review, or it would be shared with families. I think, in this way, clinicians would be much more involved in the initiation of the written communication. I think they’d also be more likely to see the benefits of the written communication when they’re interacting with family members.
Dr. McLaughlin: Any aspirations to make this multicenter?
Dr. Greenberg: Yes. I think that, in order for this type of intervention to be viewed as more standard practice, it would have to be validated in multiple settings. Anyone who’s interested in participating in a study like this, I’d love to talk to them. But at this point in time, it does require a significant amount of work from the standpoint of the study investigators in terms of creating the written communication and distributing it, and then we were hoping to maybe make this process a little bit more automated before expanding to multiple centers.
Dr. McLaughlin: Yeah. I could see where it could lend itself to that if you put in a certain CPT code that it would send over septic shock or acute respiratory failure, which I believe were some of your more common diagnoses.
Dr. Greenberg: In our pilot study, we realized that a lot of ICU problems and ways you might describe them keep coming up. So, if you know that someone is going to be getting a spontaneous breathing trial, you could have an automatic description of that or a link that actually shows what that is. That could save time actually having to explain that to somebody on the phone or in person. And you could just say we’re doing a spontaneous breathing trial, and then someone could look it up on their own.
Dr. McLaughlin: Yeah. Especially if a hyperlink is something that is from your organization and has been vetted.
Dr. Greenberg: Right.
Dr. McLaughlin: This really is a great idea. I have to ask you one personal question. Have you ever had a family member in the hospital?
Dr. Greenberg: I have had a family member in the hospital.
Dr. McLaughlin: How did you feel about communication with the hospital staff?
Dr. Greenberg: I wasn’t the one directly receiving communication because I wasn’t their decision-maker. But I often, as a physician, would hear information from the medical providers and be asked to interpret it. I think that when you’re thrust into that situation, it’s just very emotional and you’re often just still hoping for the best and that often kind of clouds how you process information and how successfully you can use that information to make decisions. So I think if I were on the receiving end of this, I would appreciate the written communication because you’d be able to hear directly what the team is thinking about and it would be a shared resource among family members that you could refer to when thinking about what’s going on and making decisions.
Dr. McLaughlin: That’s actually exactly what I was wondering, is how you would view it as somebody receiving it. It could potentially take you out of the interpreter role.
Dr. Greenberg: During the COVID pandemic, there was a family member who was actually a medical resident and his wife was in our hospital and he was trying to communicate with her parents, how the patient was doing and the fact that he had these summaries he thought was very helpful because he could just refer to that and they wouldn’t be as focused on his medical knowledge and what was going on. He thought it was more of a relief even though he did have that expertise.
Dr. McLaughlin: Well, I think it’s a great idea. I’ve enjoyed reading the published study and I’ll look forward to seeing what’s coming out. It sounds like you have a second portion that’s more qualitative in the works.
Dr. Greenberg: Yeah. We have some data that has not yet been published on how families are doing after the ICU stay. Some of them participated in the study. I think moving forward, we’re looking to enroll a fresh group of family members, like I said, where the clinicians have more of a role in the creation of the written communication.
Dr. McLaughlin: And see how maybe in the post-pandemic world if the results are similar or not.
Dr. Greenberg: Right. Correct. A challenging aspect of this research is I think that some of these surveys maybe don’t always get at exactly what is beneficial. None of these surveys say: How easy was it for you to communicate with family members during the ICU stay or, how much trust did you have in the care team? That’s really something that you only get by talking to the family members that received it. Even in our study, our measure of acute stress was not significantly different between the families who received the intervention versus those that didn’t. I know that in multiple cases this actually did improve or reduce their stress during the ICU stay.
Dr. McLaughlin: I look forward to hearing more. Do you have any final statements that you’d like to say about your study or future studies on this topic?
Dr. Greenberg: I know that this is something that is very important for clinicians. That’s what we spend a lot of our time after reviving somebody from the acute phase of critical illness. I hope that there’s just more attention paid to the family experience, both for their outcomes and helping them make decisions because I think that everyone benefits when families make decisions more easily and with less stress.
Dr. McLaughlin: On behalf of fellow clinicians, family members, and SCCM, thank you for your work and thank you for being here to discuss it.
Dr. Greenberg: Thank you for having me.
Dr. McLaughlin: This concludes another edition of the Society of Critical Care Medicine podcast. For the Society of Critical Care Medicine podcast, I’m Diane McLaughlin. Thank you.
This podcast is sponsored by Sound Physicians, the employer of choice for critical care physicians, where we seek to transform acute episodes of care. At Sound physicians, we ensure physicians have the time and resources needed to deliver compassionate care that measurably improves quality and lowers the cost of healthcare for patients in the communities we serve. For more information, please visit careers.soundphysicians.com.
Diane C. McLaughlin, DNP, AGACNP-BC, CCRN, FCCM, is a neurocritical care nurse practitioner at University of Florida Health Jacksonville. She is active within SCCM, serving on both the APP Resource and Ultrasound committees and is a social media ambassador for SCCM.
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