SCCM Resource Library-You Can Promote Family-Centered ICU Care Learning From the SCCM Family Engagement Collaborative

Video Transcription

Hello there. My name is Dave Wong, and I'm a neurointensivist at the Yale School of Medicine in New Haven, Connecticut. I thank you so much for joining our session this morning  on the SSM Family Engagement Collaborative. We have a really exciting lineup of speakers and are happy to share this with you. Before we get started, I just want to give a couple  disclosures. I did receive an honorarium from SCCM for my work on this project, and also have a philanthropic grant through the Apple Pickers Foundation.  I just wanted to start by talking about one of the first SCCM Family Engagement Collaborative.  This is the PCOR-ICU initiative that came out, this paper came out in 2019, but was an initiative from 2016 to 2017, led by Ruth Finepell and Jerry Zimmerman through a PCORI grant,  to really link together 63 ICUs across the country that were interested in family engagement, and that had a desire to learn from experts and also to communicate with one another as  they put together local projects to improve family engagement. This collaborative was very successful and demonstrated a measurable improvement in family satisfaction and clinician  engagement in family-centered care over the course of the year that was put together.  Because of the success of the PCOR-ICU, SCCM decided to put together a new version of the collaborative called the Family Engagement Collaborative. This one was started in September  2019, and the vision was to go until September 2020. The purpose of this collaborative was  much like the first one, to encourage participating ICUs to identify and implement a local quality  improvement project that would improve family-centered care. We were fortunate to have 27  ICUs that participated, and I was very pleased to work with Kim LaRose, who is a family advisor  to the Pediatric ICU at Cornell, as well as a fantastic group of staff from SCCM, Kathy Vermick, Adair Andrews, Marty Gonzalez, and Lori Harmon, putting this collaborative together.  And much like PCOR-ICU, this collaborative initially started with a series of webinars for all participating sites. You can see some of the topics that we addressed during those  webinars here, including engaging family advisors, reviewing family-centered care guidelines, implementing family-centered rounds, creating family conference protocols,  creating informational materials for families, and assessing project impact.  And we were really happy to see that all 27 sites picked great projects for their involvement in  2019. We have the projects that are listed here. You can see some of them were the same ones as our  webinars, but some sites picked other projects, things such as ICU diaries, protocol development  for withdrawal of care, physical therapy for ventilated patients, and written daily summaries  of care for families. Unfortunately, COVID really upended all of our best laid out plans, and in  March 2020, we had to actually stop the collaborative, because the majority of sites just simply couldn't continue with these family engagement projects with visitor restriction  policies due to the pandemic and staff bandwidth. Initially, this session that you're listening to  in Congress, it was supposed to be one where we would allow sites that participated to showcase  their local projects on the national stage. Instead, what we've done is we've replaced  that initial intention with four fantastic talks on topics related thematically to the collaborative.  And here are the talks that we have out that you'll hear during this hour. We have a talk on  Incorporating Families into Team Rounds by Melissa Motta from the University of Maryland.  We have a talk on Structured Family Care Conference Protocols from Doug White from the University of  Pittsburgh. Jenny Janisco from Arkansas Children's Hospital will be talking about patient and family  advisory councils. And Chani Traub, a pediatric intensivist from the Cornell campus of New York  Presbyterian, will be talking about psychological symptoms in the ICU. We're really fortunate to  have this great lineup of speakers, and all of them will try to address these different topics  in the time of COVID, which is, as we all know, has upended things so much in ICU care.  If you're interested in learning more about the collaborative itself, we do have a couple of  abstracts that we prepared off of exit interviews from the different participating sites. We have  one abstract on lessons learned from the family engagement collaborative prior to the COVID-19  pandemic, and one on ICU visitor restriction policies and approaches to family engagement,  also from the pandemic itself. Again, these were abstracts that were built off exit interviews from  the 27 different sites that participated in the collaborative before it was canceled.  With that, I just want to say thank you to each of you for listening in during this hour. We're  looking forward to hearing your comments on the chat. I want to thank all the participating FDC  sites that participated in this collaborative before it had to be stopped, unfortunately. I want to thank all the speakers today, and I want to thank the faculty for the prior FDC  webinars that I mentioned when we kicked off the collaborative more than a year ago. Judy Davidson,  Debbie Walter-Meyer, Randy Curtis, and Charlie Chang. A special thanks also to Darren Halen,  who had helped us plan the outcomes assessment for this collaborative before it was canceled.  And finally, a thank you to Ruth Lempel and Jerry Zimmerman for kicking things off with PCOR-ICU  many years ago. So we thank you again for listening, and we hope that you find the talks  educational, and we're really looking forward to your comments. Thank you so much for joining us.  Hello, my name is Melissa Mota, and I'll be talking to you today about transitioning from observer to participant, incorporating families into team rooms.  I'll start with this anecdote, in fact, a letter that Paula wrote about her sister Mary.  On August 22nd, while giving her nursing report in the PACU, my sister experienced a subarachnoid  hemorrhage. I was called by co-workers and told that she'd had a seizure, to come now. We arrived  in the emergency room expecting to find her impatiently playing on her phone, giving orders  to the staff. Instead, we found her intubated, unconscious, and were told that shock trauma  transport was on their way. It felt like we were driving down the road at 60 miles per hour and  hit a brick wall. She described rounds this way. We were invited to be in the neuro ICU rounds each  morning. I remember the first day in the ICU and recounting the experience for my family.  There were 10, 12 individuals from neurologists to pharmacists, nurses, students, all discussing  my sister's care. The depth of their knowledge, concern, and collaboration was impressive.  The first time I was asked if I had questions was quite intimidating. I appreciated the fellow  who returned after the team had left to speak with me one-on-one. Every day we were invited to participate and ask questions. As the days passed, we were educated about our sister's  condition and began to understand the extreme treatments necessary. This group of highly  educated, experienced doctors included us. This team held their breath with us, waiting for her  toes to wiggle or give a thumbs up, a sign of neurologic improvement. And on our last week in the ICU, they individually told us that we were absolutely an asset to my sister  and the ICU team. What happens for the families who cannot attend rounds each morning?  Family-centered care comprises the F in the ABCDF bundle, which calls for family members  and surrogate decision-makers to serve as active participants in care planning and decision-making  for critically ill patients. In 2017, and again in 2019, our hospital participated in a 10-month quality improvement collaborative organized by the Society of Critical Care Medicine  to help hospitals implement patient and family engagement-centered initiatives echoing the SCCM 2017 guideline. We owe much of our success to the SCCM collaborative  coaching, support, and networking. In the next 10 minutes, I'll take you through our journey to incorporate families on bedside rounds and build on how we built on our successes.  I'll take this opportunity to acknowledge that I am presenting the work of many people who contributed to this effort. Change can be difficult and complex. Changing behavior,  processes, and the social structure in the ICU is a heavy lift, and it takes time. For this project,  we had to meaningfully engage dozens, if not hundreds, of health professionals within our  health system to get us off the ground, often one person at a time. We started by inviting physicians and nurse representatives from each of our ICUs to join our steering committee.  With the support of the collaborative, we conducted a family satisfaction care in the ICU  survey, the FSICU survey, to assess family satisfaction. And to assess clinician perceptions,  we conducted an Institute of Patient and Family-Centered Care self-assessment inventory.  We then presented the results and the aggregation of hospital resources to our steering committee,  along with patient and family advisory council for the hospital. Each ICU representative also  completed a gap analysis tool developed by the Society of Critical Care Medicine to support translation of patient and family-centered guideline recommendations to practice.  Collaborative data were centrally collected and managed using a RedCap database. Our inventory looked like this. We were engaging in some of these activities, but not consistently.  In other words, there were lots of opportunities for improvement, and we had to choose where to  focus first. Most experts would agree that several domains for family-centered care are important. Those include family presence in the ICU and good communication, a welcoming ICU  environment, and support systems outside of the primary ICU team. After looking at our gap analysis  and clinician and family surveys, we decided to focus on family presence and communication. When we looked at the evidence on how to best improve communication and family presence,  we decided to work on welcoming families to our team rounds as an important element of multimodal communication. Our aim was to improve patient and family engagement in the ICU  by consistently inviting families to partner with us in daily care rounds. We devised our plan,  identified the important stakeholders responsible, and presented the project during staff huddle  and critical care operations meetings. This is some of the information that we shared with staff.  What does including families on rounds look like in the neurointensive care unit?  Family members are oriented on admission and invited to listen to rounds. At the conclusion  of rounds, the plans for the day are communicated to them in understandable language. Then we allow  some time for a few brief questions, and if needed, the attending provider or another team delegate  can provide further clarification after rounds. We built on a successful QALY improvement project  which involved implementation of a nursing rounding sheet. The bedside nurse would be  The bedside nurse would document family presence on rounds on the daily goal sheet.  If family was not available on rounds, a member of the care team would then be assigned or tasked with communicating the daily plan of care to the family.  With the help of the collaborative, we were able to share the evidence behind the patient  and family engagement strategies with the staff. We shared that family members contribute valuable  information about patient care and contribute to the patient's plan of care, and the presence  of families during rounds reduces anxiety for families for patients and increases satisfaction,  improving communication with the health care team. There were a lot of concerns about extending the  time for rounds, whether teaching would be interrupted, and we shared that family presence during rounds can actually save time spent responding to calls or updating families after  rounds, and that residents found incorporating teaching with the family present and modeling  that communication was extremely helpful. We wanted to make sure that we kept the families  up to date, and we had introduced the idea of participating on rounds from admission, creating that welcoming environment, and that led us to have a better uptake from families  with participation on rounds. We used the PDSA cycle. We started small. We measured and adjusted.  We reviewed the data that we collected. We gave feedback to the group and made modifications  in our plan as we went along. In some cases, we had to prune some elements and try to focus on  the main task, which was family presence. The family satisfaction with care in the ICU survey,  which I mentioned, was used to assess family satisfaction before and then after three months.  Post-implementation, family members reported increased overall family satisfaction, satisfaction with decision-making, and inclusion and satisfaction in quality of care.  So, the steering committee was very key to us to organize our work, to keep us motivated. The monthly meeting allowed us to maintain enthusiasm among the leadership and our staff  to update our champions on the project status and really helped us change culture in the unit  from the top down and the bottom up. Before we started the project, we would typically walk up  to a patient room, and if the family was there, we would close the door and proceed to round  outside of the room without including the family. Now, having families on rounds is the norm and having families on rounds is the norm and usually expected.  Now that families are consistently participating in rounds, we can now focus on quality improvement  and quality control and using the SCCM collaborative to look at the elements on rounds  and ensure that we're doing inclusion of families on rounds properly. We developed a checklist to  look at the different elements of family inclusion on rounds and make sure they're happening,  such as ensuring nurses are present, that the family's invited, and make sure they want to  participate. We introduced the team properly and the roles, and we've even adopted a presenting  style where the families, if they're with us overnight, can present the overnight events from their perspective. We make sure that the assessment and plan is discussed and make sure  that we've reviewed the goals for the day with the family.  Obviously, now with the pandemic, there's limitations to visitation, but in fact, this is what our rounds look like in 2020 with the family on one Zoom screen and the  consultants and the learners on some other screen or device still participating with us  in rounds, even if remotely. We've also created an online group that can host peer support groups  for our families. So, I'll leave you with this final thought from the Institute of Patient and  Family-Centered Care. Advancing the practice of patient and family-centered care is not a program  to be rolled out. It is a long-term journey and commitment that evolves with changing needs, priorities of the organization, and the individual families and communities it serves.  Continued efforts are needed to ensure sustainability and accountability. Thank you.  Hello, my name is Doug White. I'm from the University of Pittsburgh School of Medicine, where I'm in the Department of Critical Care Medicine, and I really want to thank the  organizers for having me here as part of this session today. So, the topic I'll be speaking  on today is so many cooks in the kitchen getting on the same page with structured care conference  protocols. By way of disclosures, I receive grant funding from the NIH and Honoraria as a contributor  to UpToDate and also as an associate editor for the American Journal of Respiratory and Critical  Care Medicine. So, what I'd like to talk about in the next 10 or 15 minutes are these two things.  First, to propose a set of goals that should guide how we design family support strategies in ICUs, and then also to describe several different strategies that have been used and  empirically validated to reliably achieve timely proactive family support. A couple things I won't  be addressing today are the following specific communication techniques to be used when engaging  with families, and also some of what I think of as the more complex aspects or very specialized  communication and ethics issues like responding to request for futile or potentially inappropriate  treatment. All right, so, you know, I think a really good place to start is, well, what are  our goals when we're supporting and communicating with families? And what I would argue is that an  outdated but common view of our goals vis-a-vis families in ICUs is something like the doctor and  the clinical team saying, well, you know, our job is really to help the family understand the patient's prognosis, values, and treatment options. Like, that's the extent of it.  You know, in this view, the family is, you know, sort of separate from the patient in an important way, and the patient is really our focus. The family is really maybe there to  give us information and authorize decisions, but not really our obligation. And I think this model  is wrong in so many ways. I think, you know, really the field has shifted to truly conceptualize  the patient as part of our responsibility in terms of support, not only because they are humans who  suffer and need our support, but also because we look to them to help us make decisions for  families, and if they're going to do that, they need to be both well-informed and well-supported,  and we'll unpack that. So, but this notion of, well, I'll just give the family the information  they need and everything will be fine is really grounded in an old economic rational actor theory, which is kind of holds this idea that when given accurate information about likely  outcomes and the patient perceived value of those outcomes, families will sort of automatically,  like computers, make reliably good and utility-maximizing decisions. And I think that both in economics and in ICUs, that model has gone by the wayside, thankfully.  And, you know, some, I think, really important work that Chris Cox and Shannon Carson led has, I think, put another nail in the coffin that pure information-focused strategies to  support families are insufficient. That's not to say they're not critically important, but they're  probably not enough. And so Cox and colleagues conducted a randomized trial of a formal decision aid about goals of care in ICUs, a multi-center study. They gave families a really  beautiful, extremely well-designed web-based decision aid that gave information about likely outcomes of treatment, a values clarification exercise, and then also  information about treatment pathways, including comfort-focused care, and compared to an augmented  usual care arm, what they found is that the intervention had no effect on the accuracy of  surrogates' prognostic expectations, no effect on decisions to transition to comfort-focused care,  no change in healthcare utilization, and no positive effect on surrogates' psychological outcomes, but might have led to higher symptom burden of PTSD symptoms. What I think is also  really, really important is that what they found is that surrogates in the intervention arm were  extremely optimistic about patients' chances of one-year survival compared to a validated model,  and also they were overly aggressive in terms of their preferred approach to life-sustaining or life-prolonging treatment compared to their report of the patient's preferences. 43%  favored something much more aggressive. So I think that what this data shows us, and what  a host of other studies I think also show us, is that the act of being a surrogate is both a cognitive act, which we all knew, but it's also an intensely emotional and psychological  act, and these are a variety of studies that really catalog the difficulties that surrogates face emotionally in ICUs. There's both the emotional conflict between acting in accord  with their loved one's values and really not wanting to feel responsible for a loved one's death, and also the desire to do whatever they can for any chance of recovery. All very  understandable and all things that we need to support families through if we're going to have  successful clinician-family relationships. Not to spend much time on this, but I just want to  point out that these observations really track nicely with insights from psychological sciences  that reveal that intense emotional states like anxiety produce really profound deficits in  people's cognitive abilities in the moment. Less ability to recall information, less ability to  organize it, less ability to think through different alternatives, and less ability to be persuaded by arguments, which I think is important when clinicians are trying to engage  families. So instead of this sort of pure cognitive rational actor model, Jen Seaman at  Pitt put together a really nice framework saying, here's what our goals should be when we're  supporting surrogates in ICUs, and she proposed this integrated framework for effective and  efficient communication that not only lays out these five goals, but also gives examples of  ways that we can structure the different kinds of ways that we can engage with families, you know, bedside rounds, family-centered rounds, interdisciplinary family conference, daily  updates, all into a nice coherent framework for family support. But she laid out five goals of  clinician-family communication. Establishing a trusting relationship, provide emotional support  to the family, help the family understand the patient's condition, prognosis, and treatment  options, so there is indeed a cognitive element to this. Help clinicians understand the patient  as a person, so that's a, you know, a flow of information in the other direction, and then also  create the conditions for careful deliberation about goals of care. And when you look at this  model, what you see is this is not just a purely cognitive model. This is a model that says there  are both cognitive, affective, and psychological elements of making good decisions and being  supported in ICUs, and we need to attend to all of these. Well, so how to reliably achieve these goals?  Judy Davidson and David Huang and others have done amazing work with the guidelines for  family-centered care in the neonatal, pediatric, and adult ICUs. I'll just refer you to both of these  for not only, you know, I want to put a plug in for this is a great compendium of resources and  recommendations, and also more recently David Huang put together an appendix to this that lays out and  gives examples of how different institutions across the country have successfully deployed  family support strategies in ICUs, so I encourage you to take a look at this. What I'd like to do is show two examples that are, I think, the most rigorously tested  in terms of ways to provide this broader notion of family support that I'm talking about.  First, Randy Curtis and colleagues conducted a really interesting multi-center RCT of an  intervention, again in ICUs, patients who are with respiratory failure and high risk of death,  and the intervention is rather than having a member of the ICU team be the one who facilitates  and organizes all of these communication, the intervention involved a communication facilitator,  which is a specially trained individual who's received training in family support and mediation  theory. This was a nurse or social worker who throughout the family's ICU stay delivered tailored support to families based on an inventory assessment of their coping styles,  also facilitated communication with the ICU team, and identified and addressed nascent conflict. So this, again, think of this model as kind of an external interventionist  model, and it's not that the external interventionist takes over communication, it's that this individual is facilitating communication and then augmenting it in very  strategic ways. And what they found is that when they looked at surrogates psychological symptom  burden at three and six months, depression, anxiety, and PTSD, they found significant decreases in depression at six months, no significant change in anxiety, but also an  important decrease in PTSD symptoms at six months, and all at least a trend toward didn't quite reach  statistical significance. But remember the Cox study that was a pure information focused study  had actually an increase in PTSD symptoms. So I do think this provides some proof of principle that  more affectively and psychologically oriented interventions may hold real promise.  They also looked at the mean ICU length of stay and costs in the control and intervention arms,  and what they found is that ICU length of stay was significantly shorter in the intervention arm  compared to the control arm, which was mediated by a large decrease in the length of stay among  decedents and no real change amongst survivors, suggesting that the intervention is accelerating  decision making and patients likely to die anyway. And I should mention there was no change and no  difference across arms and mortality rates. And then finally, they also found significant decreases in ICU costs. So I think when you're looking at the economic model, this is an  intervention that costs a little bit, but likely recoups those costs in terms of more efficient and arguably better care for patients and families.  A second or the second intervention I'd like to talk about is a family support intervention that  we developed and tested here at the University of Pittsburgh and UPMC. We conducted a stepped  wedge cluster RCT comparing usual care to what we call the protocolized family support intervention.  And rather than having it be delivered by or facilitated by an external interventionist, it was delivered by the existing interprofessional team and led by the nurses.  This was a trial in 1420 incapacitated critically ill patients in five ICUs, all were at high risk  of death or disability. And we looked at a variety of outcomes that I'll talk about in a minute. But  what I really wanted to focus on is the intervention itself and also how we reliably deployed this intervention and maintained it over time. So as I said, we identified nurse  leaders in each ICU to be the ones who were what we call the partner champions that this is called  the partner intervention. And the intervention involves three components, institution of a  protocolized family support pathway, advanced communication skills training for these nurses,  which was a 12 hour in-person course back when we did things in person. And then I think really  importantly for this talk today is very intensive implementation support. At UPMC, we have something  called implementation specialists that help with quality improvement projects throughout the  hospital and that they were part of this process. We started by getting explicit endorsement from  hospital and ICU leaders for the project and they sent out encouraging emails. We identified and  maintained relationships with physician and nurse champions in each ICU throughout the study period.  We did academic detailing of all the clinicians in the ICUs to make sure they understood the  intervention, bought into it, had their questions answered. And then we did frequent site visits by  this implementation specialist weekly to both troubleshoot, see what's going on, what's not  going well about the intervention, and also to coach the individuals who are deploying the  intervention to help them refine their skills. The intervention is really, as I said, a structured  family support pathway that is led by the nurses, but involves the full interdisciplinary team.  It starts with nurses, the partner nurse making contact with the family on the very first day they're identified as eligible and really focusing on providing emotional support,  getting to know the patient and family and orienting them to the ICU. And then having  family meetings on a set schedule within 48 hours and then every five to seven days thereafter. And interestingly, before and after each of these family meetings, the partner nurse  sits down with the family and helps get them ready for the meeting, helping them write down their main questions, helping them think about the patient's values and preferences.  And then also as strong emotions come up, the partner nurse creates the space to provide  emotional support. The partner nurse is then in the interdisciplinary family meetings that the ICU  team leads as they normally do, but the partner nurse is there to ensure that key topics are  discussed and that the family is emotionally supported during the meeting. And then finally,  the partner nurse sits with the family after the interdisciplinary family meeting to attend to  strong emotions that came up, to elicit questions and then to listen for and correct any  misunderstandings. And so this process plays out where every day the partner nurse is checking in  with the family. If there's not a family meeting, he or she just sits down with them to provide  emotional support and troubleshoot if there are things coming up. Punctuated by family meetings,  at least every five to seven days in this pattern I just described. And so what we found when we  studied, this was a separate QI project that we did not publish with this trial, but what we found  when we compared the amount, the proportion, for example, of family meetings within 48 hours of  enrollment in the control versus intervention phase, we found a very big increase in early  proactive family meetings in the intervention arm, 96% compared to 52% in the usual care arm.  And what we also found is that the intervention did not have any impact on surrogates' psychological  distress at six months. It's really, really no change at all. No improvement in depression or anxiety symptoms. perhaps some small increase in PTSD symptoms,  again, didn't reach the level of statistical significance, but certainly didn't help. However, on every other outcome measure that we studied,  the intervention had a positive effect. So positive ratings of the, when we asked the family to rate the quality of communication using Randy Curtis's scale  at three months, very significant increases in the score in the intervention arm compared to the control arm. We also asked them to rate the degree to which the care  was centered on the patient and family as individuals, and a lower score on the scale is better. We found a significant improvement  in patient and family centeredness of care scores.  We also found a significant decrease in ICU length of stay, again, mediated by a decrease of two and a half days amongst the decedents, no change in the survivors' length of stay,  and an overall decrease in hospital length of stay, which came with a decrease in total hospitalization costs  and direct variable costs. We also quantified the amount of funding required to sustain the intervention, and what we found is that it was about $170 per patient  over the course of the study.  So I'll just end here by saying, you know, there are a lot of different ways to provide family support in ICUs. These are just two examples.  I want to refer you back to the SCCM website for more examples of how other ICUs have done this in a reliable way. But two key points, family support interventions in ICUs  really do need to go beyond a narrow focus on informational needs to also support families through the emotional and psychological challenges of the experience.  And also, as I said, there are feasible and effective strategies to deliver this multifaceted support to families, but it really does require savvy use  of implementation science and QI strategies to not only change care practices, but maintain those changes over time. Thanks very much.  Hi, I'm Jenny Ginesco. I'm the Director of Critical Care Services at Arkansas Children's Hospital. And today I'm going to do a short presentation  on Paying It Forward, Recruiting and Sustaining a Patient-Family Advisory Council for Your ICU.  So I'm going to start with a little bit of background, a little history.  This presentation is based in the building of a Family Advisory Board at Arkansas Children's Hospital in Little Rock. This PICU has 26 beds with a 12-bed intermediate care unit  right outside its doors. It is the only PICU in the state.  It is a magnet-designated hospital, and we are a silver-level beacon unit.  The idea for our FAB was born out of discussions with PICU nurses and with our patients, some of our parents, I'm sorry, of long-term and frequent stays.  Our Family Advisory Board, or FAB as we call it, was created in 2017. We've had great successful collaborations and outcomes for our unit and for our patients and families.  So I've broken the process down into four steps to help guide others in building a FAB of their own.  All right, the first step is garnishing interest and support. So for a FAB to be successful, it must be supported by hospital administration,  as well as unit leaders and team members. We were fortunate enough that the leadership at our hospital was very interested in pursuing the idea of a family group  that collaborated with unit team members. We worked with the section chief and the medical director of the PICU to outline this group, and we were able to get a lot of support  to outline this group. One of our intensivists volunteered to co-lead the group's inception with myself as the nursing director.  We began to gain support across team members in the PI. The unit's retention and recruitment committee, which consists of physicians, nurses, techs,  respiratory therapists, social workers, our child life specialists, were all really highly engaged with this process as well. The group constructed the outline of a group charter  as well as guidelines for members. Monthly meetings for this group were the goal. We kept the number of the FAB at a total of 20, and we felt that the group dynamic would be best  to start with 60% family members and 40% PICU staff. And so this gave us a good but moldable concept to move forward with recruiting.  Our second step was recruitment. You wanna make sure that you're getting the right players for your board. We started a Facebook page for past patients  and began to gain interest and support from families that have been in our unit.  We started recruiting via that Facebook page. The team sent a postcard advertising the FAB to families that had had stays in the PICU over our past three years.  We could have gone out further, and we probably would have, but that was our best information, and so we started with that metric.  We're lucky enough to have some really long-term staff in our PI, so we asked them their expert advice on families that they remembered,  and we reached out to those families specifically. Our organization also has a patient and family satisfaction leader, so that was very beneficial to us in this process.  We enlisted their help.  They helped to broaden our recruitment efforts with social media posts on all the hospital socials.  We then asked each family member with interest to complete an application, and we asked our PICU team members that had interest to do the same. The applications were not identical,  but they were similar in nature. The leadership team and the PICU social worker met to review and decide on board members based on preset criteria that we had come up with.  We didn't exclude short-stay parents or parents of children that had died in our PICU either, although initially we did not have a lot of interest in our short-stay parents.  Step three is defining the inner workings of your board, so you gotta figure out how it's gonna work. You gotta work to complete the structure.  We had done some preliminary work on structure initially because when garnishing interest, people had a lot of questions about what was required, what we were gonna focus on,  and so we had kind of a scale that we wanted to work from, but once the board members were selected, we needed to really work on that structure completed,  so we held a kickoff meeting. The first meeting was really just to get to know each other, to tell our stories, how we were connected to the PI, and then we started to brainstorm  on what we really wanted to accomplish as a group. So the board met, amended, and agreed upon the bylaws and the charter, so we had that set in stone by our second meeting.  That included a two-year term for each board member with a rotation every two years of chair and co-chair. So we chose the standing meeting time for each month  that works for the team. It was important for the group to keep an agenda with key items to be discussed at each meeting. These agenda items included upcoming events,  what's new in the PICU, and parking lot items from previous meetings, so we always had those standards that we would come back to at every meeting,  which gave the meeting a good bit of shape and form.  Initial meetings were run heavily by the PICU team, so until our parents really felt comfortable and we worked through expectations, the hospital team really kind of pushed  through those first couple of meetings to get things started, but as the group grew more comfortable with each other and with us, other ideas really began to move to the forefront.  We did have a couple of potential pitfalls. So with all groupings, gatherings of people, there are some things you wanna be aware of.  So when building your FAB or pulling your FAB together, these are some things that you should really be aware of.  Many of the ideas that the parents put forth initially were unrealistic in nature. So they were very expensive or they required capital funding to fix. They were great suggestions.  I would have loved to do all of the suggestions, but it was really difficult at times to manage the desire of the families and the reality of producing that outcome for them.  So to avoid that pitfall, I would recommend a very strong chair with decision-making authority to help work through those issues.  We had simply four board members that just stopped coming after about the third meeting.  That made us very thankful that we had not started super small so that there were still more families and staff members, because we felt like that that balance was important,  that there were more parental interactions and members on our FAB than there were actual team members.  On occasion, the board members really disagreed with one another on the best route or the best project to focus on or undertake. So again, we found that it was very imperative  in the beginning there was a strong chair that could kind of help maneuver through those situations.  In the first year of the FAB, we found that parents had wonderful suggestions, but anticipated that it would be the PSU staff that would be responsible,  that would take responsibility for those suggestions. So after that first year, we really started trying to make changes so that the families were more active  in action items decided on by the FAB. A couple of our initial meetings, one of the first six months of meetings, really good ideas, some really costly ideas,  and then they would say, now, how are you going to do this? And so the vision that we had for the FAB was more of a partnership. So how are we gonna partner  to get these things accomplished? It's not one or the other, it's how best can we work together? And so we had to really work through that expectation.  Step four is revising and sustaining your board. So once you have a board in place, you've got a charter, you've got that infrastructure,  you've got that support kind of built in, you then have to really think about how you're gonna sustain that engagement and be agile in revisions moving forward.  So how to make it better and how to make it less, right? With each year, we've been agile in making changes to best suit a productive FAB. In year one, we had many parents  that stayed with us for extended period of times and multiple times a year. We did find, like I said earlier, we didn't have a lot of short-stay parents.  We did find, though, that when we reached out  and added some of those shorter-stay parents, we diversified and that brought a different perspective and kind of shifted the group perspective  and it became a little bit more balanced. The average length of stay in our PICU is really just a little over 48 hours. So where we want to work on those things  that the long-term families are in tune with, which is many more items because they have many more opportunities to encounter things, the bulk of our patients and families  do have those shorter stays and so we really wanted to diversify that perspective.  Each board member received a packet prior to the first meeting and explained the expectations of the role on the board after our initial startup because we wanted to make sure  that those expectations were clear and we found that we didn't really do a strong job of that in the beginning. In year three, we worked to make a parent to the co-chair.  So previously, I chaired the board for the first two years and the co-chair was one of the intensivists, the PSU intensivists in our group. But we found that as we really wanted  to have those clear expectations and some ownership by the parents that were participating on the board,  we felt like it would be a good move to nominate and select a parent as the co-chair to this board. So currently, we have a PSU nurse that is the chair  and then we have a parent that is the co-chair.  So it really helped to more evenly distribute the climate and responsibilities. Each year, we set goals for the group. It typically takes us two meetings  out of the first of the year to decide on what those yearly goals will be. We found that if the goals are kind of soft or not concrete, the engagement kind of falters  due to lack of clear outcome or clear finish line. So we started really making those a little bit more concrete and less kind of squishy, if you will.  So two years ago, we started critical care medicine, really started incorporating those family goals that were decided on by the FAB into our yearly section goals for the year.  And so that has given kind of a deeper breath to the importance of the FAB and has helped tremendously with engagements from our FAB families.  We also have done some really fun things, like, I mean, pre-COVID, they were fun things, like meetings off campus in a fun space where the FAB can bring their kids  or their other family members and they can get to know each other on a different level, just not on a board level.  We've got T-shirts for our FAB.  We'll supply meals to some of our meetings from donor funds for our FAB. So those things, they build more of a community environment and it really makes collaboration a lot easier  when you know somebody on a personal level like that. In 2018, we started offering a virtual option, which proved very pertinent this year,  so that families from all over the states, since this is the only PSU in the state, we wanted to reach all four corners. And the virtual option really helped  keep the engagement rolling because it didn't mean that you had to come to a meeting spot, and so we found that very, very beneficial and now imperative in this day and time.  You've got to constantly work on recruitment. So life happens and you'll lose members. I mean, we had those four members that stopped  and they've had some other members kind of trickle off, just depending on what their life circumstances hold. So you really want to make sure  that you are kind of constantly putting that out there, talking to families about that.  We now have a waiting list of parents that are interested in participating in our FAB. So that has really helped sustain our grouping and keep our FAB solid.  Okay, so I wanted to share a couple of notable outcomes that we've had. Some are big, some are small, but they are all very important to our families and our patients here.  Our FAB's worked on signage. One of the very first things that we did, and this is just an example of a project that we worked on signage. I think that as healthcare providers,  we walk into a space and we don't really pay attention to certain things. We had one parent at our very first FAB meeting that walked into the space,  which we hold the meetings near the unit. And there was probably seven or eight, eight by 10 pieces of paper laminated that had instructions on what to do.  And they commented, you know, we don't see this. When parents are coming into an intensive care space, they're not concentrated on what all these pieces of paper say.  So we worked really hard with them on signage and our waiting space that was clear and concise, that was to the point, the most important things. We talked about unit orientation  that we do with our families, and when's a really good time to do that, which of course varies a little bit on families, but maybe not the first two hours  that they're trying to see their child in the intensive care unit.  We use their expertise and opinions to redesign their waiting area for better ergonomics and privacy for families in that space.  The past several years, the FAB's worked to raise funds for an annual PIC reunion. That's a very big hit. It's always got a great name  and it's fun for both patients and families and staff.  The group has raised funds also for small gifts for families that are present in the PSU on holidays. So you can see on the slide, this was an example of our Christmas ornament  that we passed out this year to the families that were here during that holiday. Just a small reminder, a way that our families, our previous families, can reach out to the families  that are currently inpatient during those times to say, we have been there. We've maybe not been there on Christmas, but we understand we're thinking about you.  The FAB worked to make areas more comforting.  I'm sorry. The end of life room in the PSU was a private space, but it was kind of a cold space.  So the FAB worked to make the area more comfortable and petitioned for adding a bathroom for families in that space. That was one of those projects that I mentioned  that was a little bit expensive, but we did work that out so that the families going through an end of life situation, they didn't have to leave that immediate area  for those basic necessities. The PSU FAB volunteers to main organizational events like Easter egg hunts and our annual organ donor celebration,  which we hope to get back to it one day soon. And so this year has brought challenges for everyone, but this fiscal year that started in July for us,  the FAB's main goal was to create a smoother transition from the PSU to our medical surgical units. And so that is also a group of care section goal moving forward this year.  All right. So next steps, we're going to continue to sustain and build momentum. We're going to invite former patients to join the board.  That was something that was recommended to us and we don't have that perspective. So we're looking forward to maneuvering into that. And we also want to partner with other ICUs  within the organization to spread this structure and the success.  I'm more than happy to answer any questions or share any other pertinent information. You can contact me. I appreciate your time. And thanks so much.  Hello. My name is Hani Traub. I am a pediatric ICU doctor in New York City. And it is my pleasure to be here today as part of this symposium on family-centered care.  I have no relevant financial conflicts of interest to disclose.  My objectives for the next 15 minutes or so are to discuss the psychological symptoms that present in the ICU. I want to focus on this from two perspectives.  One is the patient's psychological symptoms. And the other is the psychological symptoms that present in the family members of the patient. With respect to the patient,  the most common psychological symptoms are those related to delirium. With respect to family members, it is often anxiety and less often depression.  I also want to describe how family involvement is a key factor in preventing psychological symptoms in both the patient and the family.  So first, we'll start with the patient and delirium. What is delirium? Delirium is basically global cerebral dysfunction. And it's caused by the direct physiologic consequence  of the underlying medical condition or as a side effect of treatment for that condition. The hallmarks of delirium is that it has an acute onset and a fluctuating course  where it waxes and wanes over the course of the day. And it needs to have disturbance in both the patient's awareness and the patient's cognition.  Importantly, delirium is almost always reversible. When the critical illness resolves, the delirium resolves as well. With respect to the psychological symptomatology,  it comes in three flavors related to the delirium subtype that the patient is experiencing. The hyperactive subtype of delirium is easy to recognize.  It's manifest with agitation, restlessness, and emotional ability. It's extremely distressing for the family members to witness as well as for the healthcare providers  who are caring for the patient. Hyperactive delirium, however, is only the tip of the iceberg. It only affects about 8% of patients with delirium.  The much more common subtype is hypoactive delirium. Hypoactive delirium is characterized by apathy and listlessness. And it is often the family member  who first notices this subtype of delirium where they'll look at the patient and say, that's not my loved one. The medical providers are more likely to overlook  this more subtle type of delirium as the patient isn't bothering them. They're generally quite apathetic and cooperative with medical interventions. So it's often the family member  who first recognizes the hypoactive delirium psychological symptoms. Mixed delirium is delirium that vacillates between hyperactive and hypoactive subtypes  over the course of the day. And delirium is basically an epidemic. It affects more than 25% of children in the ICUs, more than 50% of children on mechanical ventilation,  more than 60% of adults on mechanical ventilation. And when we think about preventing and treating delirium, what we need to do is focus on the underlying cause of delirium.  This over here is what I call the unholy trifecta that leads to delirium. The first is the underlying disease that brought the patient into the hospital to begin with.  The second is side effects of treatment for that disease. And finally, we have the unique environment that is the intensive care unit. We can think of almost any patient in any ICU  in the world today. For example, a patient with acute respiratory failure, that a patient has hypoxia or low oxygen levels, which in and of themselves  cause an increased risk for delirium. We then have treatment for that hypoxia, which is the mechanical ventilator with its positive pressure ventilation  that's known to increase delirium risk, as well as the sedative medications that are prescribed to the patient in order to tolerate the ventilator,  which further increase delirium risk. And then we have the highly abnormal ICU environment where the patient is exposed to lights and noises 24 hours a day with little opportunity  for cognitive or physical stimulation. It's no wonder that this patient is at high risk for developing delirium while in the ICU.  Delirium is not just distressing for the patient in the moment, it's also linked to poor outcomes, including increased duration of mechanical ventilation,  dramatic increase in hospital costs, increase in hospital length of stay, and even excess mortality, where after controlling for the other predictors  of mortality and critical illness, delirium in and of itself is associated with a more than fourfold increased risk. Delirium has effects that last beyond the ICU,  where in adult survivors, it's been shown to be related to cognitive decline, and in children, it's been shown to be related to decreased quality of life  up to one month after discharge.  We know many things about treating and preventing delirium. We know that things like universal screening for delirium improve outcomes, as does minimization of sedation,  specifically benzodiazepine-based sedation, as does early mobilization, providing physical therapy and occupational therapy to the patients while in the ICU.  What we haven't focused on enough is family involvement. Family involvement can prevent delirium from occurring and can treat delirium that has already manifested itself.  We've known this since 1999. What I show here is data from the Hospital Elder Life Program that was pioneered by Dr. Sharon Inouye. She focused on the geriatric population,  which was known to be at exquisitely high risk for delirium during their hospital stay, and she developed a specialized team that addressed the six most common reasons for delirium  in this elderly subgroup. As part of her program, she explicitly involved family members and volunteers to cognitively stimulate and interact with the patients  during their hospitalization, and she showed with this explicit involvement of family members, she was able to decrease delirium rates by more than half.  These are delirium rates in the usual care group, and these are delirium rates in the intervention group, which included family and volunteer involvement.  In a closer-to-home example, I show here data from pediatrics. This is the result of a pediatric delirium prevention toolkit that we implemented in my ICU,  where we wanted to have a very kind of operationalized and structured approach to family engagement. We provided parents of an actual toolkit,  a bag full of tools, and an educational block in order to teach them how to interact with their children while critically ill. We were careful to make it developmentally specific  and to explicitly address things such as cognitive stimulation, whether it be kind of cause-and-effect toys that a young child would press a button  and a light would come on, and also tactile stimulation. If you think about it, when a patient is critically ill, often the only tactile input they receive is painful.  It can be suctioning while on the ventilator, a blood draw, positioning while in the bed. We wanted to provide pleasant tactile input to these children.  We gave the parents lotions and explained how to kind of rub the child's hands and feet. We also talked about implementing the normal home bedtime routine.  If that involved a book and a back rub, then there's no reason you can't have a book and a back rub while in the ICU. And positioning. A child normally sleeps on their belly,  or an adult is normally a side sleeper. There's no reason we couldn't incorporate that even when critically ill, even when mechanically ventilated.  We also encouraged them to bring in favorite items from home. And with this delirium prevention toolkit, we were able to decrease delirium risk in our patients.  Now I wanna switch perspectives for a minute and focus on psychological symptoms, not in the patient, but in the family members. So we know there is a burgeoning literature  that shows that after the ICU stay, the family members of patients are often not doing terribly well. Studies show depression rates of more than 20% and PTSD rates of more than 30%  in family members of adults who've experienced respiratory distress syndrome. Rates are even higher in pediatric parents where it's 35% for PTSD.  This study came out very, very recently and I found it incredibly compelling. This was published ahead of print a couple of weeks ago in a pediatric journal  where it showed an increase in mental health disorder diagnoses six months after a child's discharge from the ICU. This shows a prescription of antidepressants,  prescription of anxiolytics. It's broken down here, mother and father. So mother seems to be doing somewhat worse than the fathers. But these are psychological symptoms  after the child's discharged from the unit. But what about while the child's still in the ICU when they're kind of available to us for potential intervention?  This is unpublished data from a study performed in my institution. The manuscript is in the process of being finalized where we enrolled 235 patients  with planned discharge within 72 hours. So we're focusing here on patients who are doing extremely well, where we're hoping to send them home within the next few days.  And what we did is we had those parents complete a questionnaire called the HADS, the Hospital Anxiety and Depression Symptom Screening Questionnaire, to see how they were doing  at this one time point within the ICU. We found that 46% of patients were experiencing anxiety. I'm sorry, 46% of parents were experiencing anxiety  and 22% were experiencing symptoms of depression. We then followed up the entire cohort of 235 patients and had the parents fill out the questionnaire again 30 days after discharge.  At this point, 32% of parents were experiencing anxiety,  13% depression, and 27% post-traumatic stress symptoms. It was fascinating to note that the only thing that predicted how parents were doing at the 30-day mark  was whether or not they had experienced anxiety while in the ICU. So we now know that we can identify those parental symptoms while they are still in the ICU.  We also know that intervention helps these parents.  I'm gonna show you three studies that have already been published.  One is the Pediatric Delirium Prevention Toolkit I had referenced earlier, where providing the toolkit to the parents not only helped the children  with respect to their delirium symptomatology, but also was shown to decrease parental anxiety. And the parents were very explicit as to why they thought it helped them.  They tied it to an increased sense of empowerment where they hadn't known how to parent a critically ill child. And providing them with these tools, with this directed approach,  really helped them kind of reclaim their ability to parent, and their feeling of control. A similar study was recently completed in Korea with adults in a cardiovascular ICU,  where they started a family participation program. Again, a very structured approach where they provided the family members with a visitation kit, an ICU diary,  instructions on exercising the patient. And this family participation program was shown to decrease anxiety in family members. And then another also very recently published study,  this came out a few weeks ago as well, talks about family care rituals. This was a very beautiful study actually, where they targeted specifically those adults  who weren't destined to, who were destined to potentially not do well. They, in order to enroll in the study, the medical providers had to identify the patient  as having a risk of mortality of 30% or greater during the current ICU stay. So targeting these kind of really stressed out family members or these really sick patients,  they provided simply a brochure, which described ways to interact with a critically ill family member. And again, appealing to the family to directly interact  and appeal to the senses, the five senses, appeal to the patient's sense of smell, sound, touch, taste, and sight. Implementing this family care ritual handbook  showed a decrease in post-traumatic stress rates by 42% at three months after the ICU stay.  We have another exciting study going on right now in my ICU. It's called the EMPOWER study, which stands for Enhancing and Mobilizing  the Potential for Wellness and Emotional Resilience in Family Members. And what EMPOWER focuses on is that the family member is often encouraged  to make decisions, life and death decisions, while they're extremely upset. So the goal of the study is to increase the family member's ability  to tolerate the distress during the ICU stay. Hopefully, this will lead to better decision-making and better outcomes for the patient, but also less family member distress.  And the intervention itself is a brief, flexible, cognitive behavioral intervention delivered in the ICU, where it's about 15 minutes at a time  of a psychologist intervening with the family member. Again, while still here in the ICU. I don't have results to report yet, but pilot data is extremely promising. And stay tuned.  Hopefully, at next year's SCCM, we'll be able to present the results of this study. So in summary, psychological symptoms in the ICU present both in the patient with delirium  and in the family member, usually with anxiety. By specifically involving the family in the patient's care, we can prevent both of these phenomena.  Involving the family member in the patient's care will decrease delirium in the family, will also decrease anxiety in the family caregiver by operationalizing their involvement  in their loved one's care. This will lead to less delirium and less anxiety while in the ICU, which leads to both a shorter length of stay for the patient,  but also a better condition for the family unit upon ICU discharge. So how to do this? It's easier to talk about it than it is to do it. I can't stress enough how important it is  to have a systematic approach to operationalize the family involvement, to involve family stakeholders in that process, and to individualize the approach for each patient.  It's also really important to get buy-in from hospital leadership and administration in order to make this a success. At that, I'd like to close  and take any questions that you may have. Thank you for your attention. ♪♪

Video Summary

The video transcript is a compilation of three speakers discussing the importance of family engagement in the ICU. The first speaker, Dave Wong, discusses the success of the SCCM Family Engagement Collaborative, which aims to improve family-centered care in ICUs. He highlights the positive impact of the collaborative on family satisfaction and clinician engagement. Unfortunately, due to COVID-19, the collaborative was put on hold, but webinars and abstracts were still shared to continue the education and research on family engagement. The second speaker, Melissa Motta, focuses on incorporating families into team rounds and the importance of family support in preventing and treating delirium in patients. She highlights the successes of the PICU in creating a family advisory board and providing a toolkit for families to actively participate in their loved one's care. The third speaker, Doug White, discusses the psychological symptoms that present in both patients and family members in the ICU. He emphasizes the importance of family involvement in preventing and treating these symptoms and shares examples of successful interventions, such as the use of communication facilitators and structured family care conference protocols. Overall, the speakers emphasize the significant role that family engagement plays in improving patient outcomes and the well-being of both patients and their families in the ICU.

Asset Subtitle

Patient and Family Support, 2021

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 2021 Critical Care Congress held virtually from January 31-February 12, 2021.

Learning Objectives

Discuss lessons learned from an ICU collaborative focusing on family engagement
Identify common barriers to implementing evidence-based and patient- and family-centered activities in ICUs
Explore successful strategies for overcoming challenges and engaging patients and families in ICU care
List existing resources both within and outside of SCCM to help ICUs implement family-centered care projects effectively and efficiently
Recognize the value of partnering with a patient and family advisory council to engage patients and families in critical care

Transitioning From Observer to Participant: Incorporating Families Into Team Rounds
Melissa Motta

So Many Cooks in the Kitchen: Getting on the Same Page With Structured Care Conference Protocols
Douglas B. Whit

Paying It Forward: Recruiting and Sustaining a Patient/Family Advisory Council for Your ICU
Jennifer Janisko

Psychological Symptoms in the ICU
Chani Traube

Meta Tag

Content Type Presentation

Knowledge Area Patient and Family Support

Knowledge Level Foundational

Knowledge Level Intermediate

Knowledge Level Advanced

Membership Level Select

Tag Communication

Tag Education

Year 2021

Keywords

family engagement

ICU

SCCM Family Engagement Collaborative

family-centered care

delirium

family support

psychological symptoms

communication facilitators

patient outcomes

well-being

	Society of Critical Care Medicine 500 Midway Drive Mount Prospect, IL 60056 USA Phone: +1 847 827-6888 Fax: +1 847 439-7226 Email: support@sccm.org	Contact Us About SCCM Newsroom Advertising & Sponsorship DONATE	MySCCM LearnICU Patients & Families Surviving Sepsis Campaign Critical Care Societies Collaborative	GET OUR NEWSLETTER
© Society of Critical Care Medicine. All rights reserved. \| Privacy Statement \| Terms & Conditions The Society of Critical Care Medicine, SCCM, and Critical Care Congress are registered trademarks of the Society of Critical Care Medicine.