SCCM Resource Library-New Technology for Pediatric Survivors

Video Transcription

Hello, and welcome to a really exciting session today entitled New Technology for Pediatric Survivors. My name is Denise Goodman and I will be your moderator today. I'm a pediatric  intensivist and a professor of pediatrics at Northwestern University Feinberg School of Medicine in Chicago, Illinois. And among my responsibilities, I'm medical director  of a large home invasive mechanical ventilation program with more than 160 patients currently enrolled. We have an uncommonly distinguished panel of three noted experts, but I first  want to set the stage around two linked concepts that underlie this session. First, we understand  that improvement in blood pressure after sepsis or gas exchange with respiratory failure are important but incomplete outcomes. We need to ensure that we restore as much wellness  as possible to the patients for whom we offer care in the PICU, and it is essential for us to define these outcomes. Related is the notion that a large number of our patients  have comorbidities, either those that predate the PICU stay or new morbidities acquired during critical illness. There's a growing body of literature around these themes, namely  post-intensive care syndrome, or PICS, and the chronically critically ill child. In fact, work by Titus Chan and others published in the Journal of Pediatrics in 2016 show that  children with complex chronic disease represent over 50% of our patients and about three-quarters  of ICU resource utilization. With that background, I'd like to introduce our topics and speakers.  First, decisions around tracheostomy. Are decisions really informed with Tessie Oktober?  Dr. Oktober received her MD from the University of Washington School of Medicine and is currently  a medical officer within the Trauma and Critical Illness Branch of the National Institute of Child Health and Human Development, or NICHD, at the National Institutes of Health. She  continues her clinical work at Children's National George Washington School of Medicine.  She's board certified in pediatrics, pediatric critical care medicine, and hospice and palliative  medicine, and her research interests center around family physician communication and decision making during serious illness. A fun fact about Dr. Oktober, she does voiceovers  for a local radio program in her spare time. After her, we'll hear from Carolyn Hodgson on transitioning home with a new tracheostomy and ventilator. Ms. Hodgson earned her BSN  at Indiana University and doctorate of nursing practice from the University of Illinois Chicago.  She is a nurse practitioner with the Pulmonary Habilitation Program at Ann and Robert H. Lurie Children's Hospital of Chicago, the program I referenced earlier. Before her current  position in our program, she worked as a staff nurse in the PICU at the University of Chicago  Comer Children's Hospital. A fun fact about Carrie, she is a commander in the United States Navy Reserve and is currently responsible for overseeing medical training for over 800  sailors in the command. Winding up our threesome is Dr. Nithi Pinto speaking on follow up for  the newly technology dependent child. Dr. Pinto obtained her MD from Stanford University and is assistant professor of anesthesiology, critical care medicine, and pediatrics at  Children's Hospital of Philadelphia and University of Pennsylvania. She is an acknowledged expert  in outcomes research with a focus on understanding the long-term sequelae of critical illness in children and developing interventions to modify these outcomes. She is leading the  development of a core outcome measurement set for use in long-term outcome studies with PALISI and NICHD. She co-chairs the PALISI Post-PICU Investigators Outcomes Subgroup  and was appointed to the Society of Critical Care Medicine Thrive Task Force to develop research, patient support, and educational resources to improve the lives of survivors  of critical illness. A fun fact about Nithi is that she recently traded in Chicago Deep Dish for Philly Cheesesteak when she moved from the University of Chicago to CHOP and  although CHOP is indeed lucky that she joined their team, I will withhold comment on her culinary choices. So, with that introduction, I'd like to turn our session over to our  three speakers. Thank you. Thank you for the opportunity to talk to you a little bit about decisions around tracheostomies  and really the question that we're asking today is, are decisions really informed? I have nothing to disclose. What I hope to focus on in our brief time is to describe first  the risks and benefits that we as the healthcare team present to families and then we'll explore  some of the factors that contribute to parental decision regret and conflict around this decision.  And I hope we end by understanding the impact of quality of life on parents after this really  important decision. So, I'll start by saying we know this is a big decision for families,  despite only 2% of NICU patients and 7% of PICU patients being offered tracheostomies,  the burden of this decision falls on the patients, the families, and the entire healthcare team.  These are the patients who are the sickest patients in our units. They are the patients who we have the most moral distress around and we also have a lot of conflict around  making these decisions. So, these are the children who have the longest ICU stays and so understanding how this decision is wrapped up both with the emotional piece that families  need to think about as well as our role as giving them the medical information is really  important. And so, what families have overwhelmingly reported is that it's one of the most stressful  decisions for them and their seriously ill child. And the truth is when we present this to families,  the responses from families are usually, gosh, this is not the life that we had imagined for  our child. There has to be a better way. Can't we try to extubate even one more time? And so,  going into these meetings, we know that there is conflict around this decision and we also  know that families are going to be reluctant and have ambivalence and lack enthusiasm around  opting for the tracheostomy. And the question is why do they have this non-acceptance, right?  There are lots of reasons. The primary one that families focus on is the cultural aspect. It is a visible acknowledgement that my child cannot live without technology and for some  parents, it often feels as a failure to have not gotten them, their child to have this sense of  normalcy. And it becomes a dream deferred. It becomes a place where families are visibly reminded  by this tube that's right here in their throat that their child is different from other children  and they will have a different life and they will have different interactions with people and the  stigma that's associated with it. There's also a mistrust that happens as many of these families  that we've interacted with specifically in the pediatric ICU. A lot of these families are, have  been told multiple times before your child is not going to survive this hospitalization or your child  needs this therapy and then the child actually does survive and it creates a mistrust that maybe  the medical team doesn't actually know all that they're they're pretending to know. And this  prognostic uncertainty is even worse with the wide variability in phenotypes of diseases, right?  I mean we see in our neonatal population that a 24-week premature infant can have severe disability  or can have very limited disability and what families want to know is what does it mean for  my child and for our family? And so one of the things that we did early in our work is we wanted  to find out what do we say to families around this decision, we the healthcare team. We took a  qualitative approach where we audio recorded family conferences and then we reviewed these  transcripts of these family conferences around this decision and specifically we were looking at  what do the clinical team tell families in terms of the risks and benefits of tracheostomy?  And we found about 3,300 statements that were either described as a risk or a benefit  of which 217 of the 300 statements were described as benefits and the other 83 were described as  risk. And the benefits fell into three broad categories. The first was you know the concept  that the tracheostomy will limit the ICU impact. By getting a tracheostomy we're going to be able to  discharge your child faster, they're going to have a stable airway so we're not going to have  code events or resuscitation events and reduce sedative needs. We're going to get your child back to being able to interact with you to be more present if we do this and I would  say that 45% of the quotes fell into this category when we were describing benefits.  The second way we described benefits was that the tracheostomy can help you overcome your obstacles. It's not permanent, your child could have a somewhat of a normal life  and speech can be restored in time and that represented about 35% of quotes and it's basically just saying that tracheostomy is a bridge to overcome obstacles. The last group of  benefits was that it can optimize the respiratory health, that you could have impaired airway clearance and reduce ventilator needs. Comparatively we describe benefits as  those things but we describe the risks into two major categories and remember we only had 83 of the 300 comments that were describing risks and the first was that boy this is a big  commitment and this represented 71% of the risks that we described. We were telling families the  tracheostomy will require extensive medical support, there will be some functional limitations,  there may be the impact on speech, your child may not be able to and they may actually also have  long-term ventilator dependence. We also described it as you know as a 29% of the risks were that  there is an airway risk and there also is a risk that you assume with any invasive procedure  and so what we can recap from our findings for from this study was that 72% of the comments  were about benefits while ignoring many of the issues that parents find the most stressful  which is will my child be able to speak, what is the impact on feeding, social impact of how this  matters to us as a family and so we also noticed that a lot of the benefits can also be described  as risks and that we as physicians as the medical team will spend more time describing the benefits that are mutually beneficial to us such as getting your child out of the ICU  while limiting some of the others like I said that parents are really interested in and so you know when we look at what factors are most important to families this is a study that  was done in 2019 that really asked this question of families who had opted for a tracheostomy  what what things matter to you and what things uh really impact your quality of life when you go home  with your child and overwhelmingly these broad categories came up out of the actual disease  burden right and it said that families feel like there's a lack of time and energy to complete  their daily activities they are facing social isolation by having their child um have you know  such severe disease that requires a lot of technology and support the financial worries  and they also have some anxiety about what the future would hold we asked very similar questions  um when we were doing our own work that said this is what we're discussing with you what is it that  matters to you so we did a qualitative longitudinal study that enrolled families over three time  periods we enrolled families from the NICU the PICU and the cardiac ICU and we captured them  at three separate time points first at the time that they were discussing so families were enrolled  if the medical team had anticipated discussing a family conference in a family conference discussing tracheostomy decision making with them and at that point we asked them about  decisional conflict then we um we captured them again at two weeks after their decision and again  at three months and we chose those time periods because in our ICU at two weeks that's when if  they've opted for the trach the family has actually started assuming some of the care of the trach and  so part of the burdens will become real and at three months most of these children are home  so um we started out with 67 families uh towards the end the ones who completed all three  surveys were 25 families and the first thing we asked them was whether or not they had conflict  around the decision and I'll tell you most families had significant conflict um around  the decision 89 percent reported at least some conflict um and we then asked what are the sources  of conflict we found that although 11 percent of families reported no conflict a large majority  60 percent of families who did report conflict the conflict was internal it wasn't with the medical  team and the internal conflict was frequently about deciding and what is in the best interest  of their child versus what they felt um was in the what the family needed and wanted and how this  would impact them but we did have a refined 40 percent of the conflict was with the medical team  and the sources of conflict were really that families felt that they had no choice you know  if um if I knew there was another option I would have taken it or that they struggled to maintain  hope um and this quote stuck out to me it was that the doctors would not give me a full spectrum of  the possible prognoses only the the worst case scenarios when asked about the best case scenarios  they would um they avoided the questions um and that that came across as a theme that we saw in  several of the um the conferences around maintaining hope and families also felt pressured right they felt like they had to make the decision and the team had already decided  what was in the best interest of their child and just were asking the family to come along  when we asked them about their regret so they had conflict we also asked them about their regret  families reported that you know 52 percent of families at two weeks said they had some regret  but that number rose to 72 percent at um at the three month mark so as you know families  were home and taking on more of the care of their child they had more regret and their sources of  regret fell into three categories the most common one was that they felt uninformed um they felt  like they just didn't have all the information to make the decision and maybe they should have  made a different decision they regretted the timing either they should they waited too long to make the decision or that they should have given it more time um and then at the three  month mark we saw this more commonly is that the um the medical care seems so optimal and this is  this is going to be a theme that comes out multiple times they felt families felt like they didn't have the resources at home to really be successful  and when we asked them about the impact on the quality of life they really stressed that um the  things that impact their quality of life the most is the financial burden their own psychological  health in um managing their sick child the medical fragility i mean what families are describing is  that they are worried that their child would stop breathing at any point and they sit vigilant uh by  their bedside um pretty much all the time uh and that the care can be the medical care can be  really overwhelming these these results were also found in another study that was done also in 2019  that asked some families about their experience of going from the hospital to home with the new  technology of a tracheostomy and really families excuse me said that the uh they really struggled  with home nursing care either not having consistent nursing care or not having good nursing care or losing their nursing care if their child comes home and then they have to  come back to the hospital and then has to come back home again really fight coordinating care  and fighting with the durable medical equipment companies they're just the cognitive load alone  for families and dealing with of learning all new diseases and really pressing the help button how  do they deal with emergencies um and and thinking about the the fragility uh and societal burdens  their family and so what we can summarize from some of this work is that really it is an emotionally  weighted decision parents are reported feeling uninformed and both short and long-term impacts  uh are felt on the family and the patient and the question is can we do better and we can right  and we do that with family-centered care um what has been shown is that part of the issues that  families are complaining about is that the lack of skills with physicians and clinicians telling them about how to make this decision helping them with the risks and burdens but  also spending time understanding who they are as people and so teaching medical team communication  skills on how to give a clear prognosis provide the emotional support that families need and  elicit their values and preferences around this decision will help them to not feel as if they  are uninformed and that they're being forced into the decision and so where they go for sources is  that it's our job to include other team members the palliative care team is a great resource for  helping navigate these decisions if they have questions that about the procedure itself asking  the ear nose and throat surgeons to come to the table is also helpful we've also found that parents  have found it really helpful to have parent to parent to parent peer consultation and this goes  to the mistrust issue is that talking to another family who may have experienced something similar  or had to make this same similar decision really helps families to feel as if they're making the  right decision for themselves and they can ask questions that they don't feel like they can ask  the medical team um making sure that we have both visual and written information for families  and the last thing is stimulation simulation that we use for um uh teaching our doctors can also be  used for teaching our families discharge teacher needs to include all of these elements yeah you  know interventional like the videos uh instructional videos for families resources that they can take  home that they can actually have paper um cpr training and the last is the high fidelity  stimulation in this study um that was done also in 2019 they asked families to give them feedback  on all of this discharge teaching materials excuse me and families wrote uh rated most  commonly that having the debrief with stimulation was by far the most helpful for them and this is  running through they ran through scenarios of emergency situations such as a trick dislodgement  or um a battery you know malfunction um and they it really helped them to be able to think the way  we think about things and so the next step is then after discharge to really think about what  resources are available for these families uh in their community and providing a support network  navigators can help families coordinate their home visits there are home tracheostomy um programs  where clinicians do home visits and as much as you know uh we don't want to necessarily have follow-up  clinics this is something that families have found extremely helpful um to uh prepare them as  they're managing essentially a mini icu in their home um and with that i will end there and say  thank you good morning my name is kerry hodgson i am an advanced practice nurse at ann and robert  h lurie children's hospital of chicago with the pulmonary habilitation program our program  specializes in sending home patients children with new tracheostomies and ventilators and i'm  here today to talk to you about the process of transitioning home with the new tracheostomy and  ventilator i have nothing to disclose for this um talk and today i'm going to be talking generally  about the different pathways and the different requirements that need to be met in order to send  home a patient with the new tracheostomy and ventilator it's kind of our program bases it  on available literature and also our experience in doing this we currently have 172 patients in  our program most of them are outpatient they all are on mechanical ventilation invasive mechanical ventilation for at least some period of time or still have their home mechanical  ventilators in their house if they're in the process of transitioning off of ventilation. This number has increased from 134 patients three years ago in 2017, and in the past year  we've sent 25 patients either home or to transitional care. So we're usually involved in the process pretty early, but once a patient now has made a decision  to have a tracheostomy placed, and the medical team has decided that they are indeed going to  be requiring invasive mechanical ventilation, and they're put on a home ventilator. We are ready,  you know, ready for discharge medically, but unfortunately there are a couple other things  that need to go on before these patients are ready to go home. So it's a carefully choreographed  process that really takes a lot of planning and careful consideration in order to get these patients safely home. So we like to think there are three pathways to discharge, and the  first is what we talked about, which is a medical pathway, and I guess one thing to note is we tend  to shoot for more normocarbia, and keep patients a little ventilated more towards, you know, eight  per kilo of exhaled tidal volume, just to give them a little margin for intercurrent acute illnesses  that may occur at home, but medical pathway, being critical care providers, I'm sure you're all  very familiar and comfortable taking care of these kinds of patients. So the second pathway is  caregiver education, and that's training whoever's going to be taking care of these children at home  how to take care of them with their new technology and all their equipment. The third pathway is an  administrative pathway, and that's kind of where all of the paperwork is bundled, so the, and we'll  go over this a little bit more detail, but securing the funding to take care of these children at home, securing the home nursing, the home equipment, and all those kinds of issues.  So the first pathway that we already talked about is medical readiness pathway, so the patient has  made the informed decision to receive a tracheostomy, have recovered from that surgery, and have been able to be placed on a home ventilator, and are medically stable for home.  You need to make sure that any interventions that they are requiring in the hospital, they're going  to be able to receive at home, that their home nursing, the parents are going to be able to do it, or that there's a company that provides that service in the community to them.  This is usually guided by the patient, and we just help the patient along.  So the second pathway is caregiver training, and this is going to, this incorporates all of the  training that the family is going to need to be able to effectively and safely care for their  child at home. Many of these patients have a tracheostomy, a ventilator, a G-tube, and other  medical devices, so this is more, this is the, really what the caregivers get to drive in their  pathway. So it's, you know, learning how to take care of their tracheostomy, learning the  tracheostomy ties, learning how to change the trach, which is one thing that I think parents  are probably most apprehensive about learning. It's learning the medications, how to administer  them, why they're getting them, when to use the PRN medications, and then we also learning how  if they have a feeding tube, how to give bolus feeds, how to give medications through the feeding  tube, and we also provide the training on the ventilator. In our program, it ends up being  four three-hour classes, and one of the classes includes learning how to make the child portable,  because once they're at home, they're going to need to be able to go out in the community,  they're going to need to come in for follow-up appointments, and, you know, they need to go to  the park or, you know, try to live their life to the fullest with their family at home.  We also have the family do a CPR and emergency management course that's geared towards patients with tracheostomies and ventilators. So our nurse coordinators teach that, and it's  geared individually towards each patient, and it goes over emergency tracheostomy changes,  bagging, what kind of, what the most common medical emergencies are at home, and how to handle it,  when to call 9-1-1, and who to call for different problems that arise at home. And then this, all of  this training cumulates at the end in a 24-hour stay, where both trained caregivers in our  particular program are required to fully train caregivers, and they come and they spend the night  taking, the whole day, the 24 hours taking care of the patient, giving them all the medications,  all the feedings, intervening when alarms go off, and then they are also packing them up for an  off-unit trip just to practice. And this is a way for the caregivers to gain confidence and realize  that they have all this training that they can do, and also if they identify, if there are areas  identified that they need more training in, we can make sure that we get that done before they go  home to ensure that they have the safest and are set up, discharge possible, and are set up for success.  So the third pathway is the administrative pathway, and that requires setting up state  agency funding, finding home nursing, getting all the equipment ordered, delivered, making sure the parents are trained on the equipment, getting all the supplies delivered to home.  It also kind of encompasses home readiness, but that's something that we've obviously thought  about from the very beginning, making sure that there's a safe house for this child to come home  to. The state agency, in our case, is the one that takes a look at the home and makes sure that there  are no electrical upgrades that need to be done prior to discharge and that the equipment is safe  at home. So this is just a quick slide that I wanted to look at. It just shows, this is a patient  who went through a significant illness and was discharged, and it just kind of illustrates  the medical complexity and the different, how many needs there are to think about when you're  discharging a medically complex patient home. So I thought that was kind of interesting.  So we couldn't do what we do without our multidisciplinary team. We rely a lot on the  bedside nurses for most of the training for the parents when they come in. We have a team of nurse  coordinators who take care of following the pathway of training, making sure the parents are  doing what they need to do and learning what they need to learn every time they come in,  and setting up the ventilator training with our respiratory therapists and coordinating, just  making sure that it all flows together on a decent timeline. We also really depend on our child life  specialist. Some of these children have siblings who may have never even been able to meet their  brother or sister, and their whole lives are about to change significantly with the discharge of  their siblings. So we really rely on our child life specialists a lot. Same with our social workers.  We have dedicated respiratory therapists for our program who are specialists in home ventilators.  They also come to our outpatient clinic, and they are great at training and troubleshooting  issues with parents. We also need input from primary and specialty medical providers to make  sure that we have met all of the medical pathways for discharge. We depend on our case managers a lot for most of the administrative pathway, and they do a great job in helping us  make sure all of those loosens are coordinated. We meet weekly with our whole multidisciplinary  team that includes therapies to make sure that we have any kind of testing done prior to discharge  so that home therapists can continue the treatment. And then we also meet with state agency representatives weekly to make sure that the funding and all of their issues with nursing  and the electrical upgrade are on the right track. So as we discussed, it's a choreographed process  that takes a lot of planning. We actually have something we call the passport home that's a timeline that kind of breaks down what we need to do and when in order to  prepare for the discharge of these medically complex patients.  The potential barriers to discharge are changes in medical status,  caregiver training. Sometimes hiccups come, especially with there's some people that can't find a second caregiver that's willing to take on the responsibility of taking care of  these medically complex technology-dependent children. Sometimes parents need to move and find a new house in Illinois that significantly can delay the state funding.  And then there's the problem of the availability of home nursing, which is probably our most common  barrier to discharge. We're lucky enough to live in a large urban area, so our patients within the  city usually have an easier time, but in the rural areas, it's definitely a challenge and  it's probably the biggest barrier that causes some patients to have to go to transitional care  or to delay discharge. It's also hard to find home nurses that are willing to take on pediatric patients and especially pediatric patients with mechanical ventilation.  So again, since we are in a large urban area, we are lucky enough to have several transitional care  facilities available as options for discharge and the most common is if they're waiting for  home nursing or their parents are a little delayed in training or having trouble finding a second  caregiver for their child. And I just wanted to end with showing the team that again, it's a multidisciplinary effort and a lot of people invest a lot of time in sending home these  patients. This is a patient who just went home a couple months ago and everyone was so excited and  everyone came to just see him off.  And I guess I couldn't end this without discussing the most important members of our care team are  our patients and their families. They're definitely part of the multidisciplinary team and the amount  of responsibility that our parents take on and our caregivers take on with the training and the care  of these children. Their lives are completely different once they go home with the child with  the mechanical ventilator and they do wonderfully and they're so dedicated to the care of these  children and these parents were super excited. They're actually wearing t-shirts that say peace out NICU, we're going home, which is pretty fun.  So thank you for your time. Again, my name is Keri Hodgson and I'm a nurse practitioner with the  Pulmonary Rehabilitation Program and I'm Robert H. Lurie Children's Hospital. Here's my email if  you have any questions and thank you so much for your time. Hi, my name is Nibi Pinto. I'm from the  Children's Hospital of Philadelphia. It's my pleasure to be here today. I will be discussing  follow-up for the newly technology dependent child. I have no relevant disclosures. I am a co-principal investigator for the PICU-Core Outcome Measure Set, which is a collaborative  project through the Capcorn and Polizzi Networks and I'm also co-investigator for the PICS-P  Longitudinal Cohort Study. Today I will be describing the outcomes trajectory for technology dependent children. I will identify their long-term morbidity as well as the long-term  morbidity for their family and I will highlight strategies to improve long-term follow-up care.  Lessons learned from the follow-up of critically ill children are important for the follow-up of  chronically critically ill children and technology dependent children. We know that hospital discharge  outcomes do not tell the whole story. Long-term longitudinal follow-up is key. Here we see in a cohort of PICU survivors that morbidity and mortality rise slightly by six months  and increase dramatically by three years after hospital discharge.  What about the chronically critically ill child? Let's take a step back and define who these  children are. While they are only 0.4 percent of all children in the United States, their multiple  organ involvement, technology dependence, and prolonged hospitalizations cause them to utilize 50 to 60 percent of hospital resources for all children.  The technology dependent child is the child in whom failure or withdrawal of technology likely  results in hospitalization. This is the child that needs medical devices to perform necessary bodily  functions. Specifically with regard to tracheostomy, the annual incidence in the United States is  greater than 4,800 infants and children. Most of these tracheostomies are obtained for definitive  airway in the setting of anatomic obstruction or to provide short or long-term ventilation  to facilitate rehabilitation or to treat acquired or congenital respiratory or neurologic conditions.  Tracheostomy dependence has an immediate short-term impact as well as an impact on the transition home, as we just learned from Dr. Tessie Oktober and Kerry Hodgson.  Follow-up of these patients must also consider their long-term outcomes, including mortality, the likelihood of decannulation, and morbidity.  Looking to our pediatric pulmonology colleagues in a cohort of 400 children who underwent tracheostomy  between the year 2000 and 2011, we see that less than half of these children were ventilator  independent at discharge, and the majority, 69 percent, required additional technology in the  form of a gastrostomy tube. Still others required central venous lines, ventricular peritoneal shunts,  or vagal nerve stimulators. These children were followed longitudinally. While their inpatient  mortality was low at 1.9 percent, by close to six years, one quarter of these children had died. In this graph, we see that patients with neurologically acquired conditions  were more likely to die than all other patients who required tracheostomy.  The prognosis is not entirely grim. We see here that another 25 percent of tracheostomy patients were able to decannulate just over one year after discharge, and by five years,  over 50 percent had decannulated.  The children who were the least likely to decannulate were children who required a tracheostomy secondary to the congenital neurologic condition.  The likelihood of decannulation was higher for children who were aged five years at tracheostomy,  or who had a tracheostomy secondary to an acquired or congenital respiratory condition,  or airway obstruction. Poor prognosticators of decannulation include age greater than five years and tracheostomy for greater than one year, congenital neurologic disease,  or the presence of heart disease during the first year of life.  In a study through the Capcorn Network, we see that children who had respiratory or feeding technology dependence experienced death, the blue bars, more frequently than children who  had no technology dependence. However, we see that new morbidity, the red bars, were similar between the technology-dependent group and the group without technology dependence.  To achieve these similar outcomes, greater use of resources was required among the technology  dependent children. These children constituted 20 percent of PICU admissions. They required  more frequent PICU therapies, such as mechanical ventilation, steroids, and parenteral nutrition.  They also experienced longer periods of sleep, and they were more likely to have  They also experienced longer PICU lengths of stay, and more frequent readmission to the PICU during the same hospitalization. They were increasingly discharged to facilities,  and as we saw in the previous slide, they had a higher mortality than non-technology dependent  children. The morbidity facing the child also extends to the family and to the community.  The families often describe that their schedule must be adjusted around the child's medical needs.  There's also a transformation of the home and a medicalization of that environment.  Families report frequent physician visits and unexpected emergency department visits.  There are countless hours spent on care coordination and advocacy, and overall, families feel unprepared. Here, we see a map of the complex networks that face a family and  their child. The child is at the center of this map, and the mother has illustrated  the complexities of interacting with various people to manage the child's education, medical, dental, social, and recreational needs, as well as interacting with legal and financial  and social supports to help navigate the path after discharge.  Clearly, these stressors have important consequences for the family, including an impact  on the family's work productivity, finances, time with other children, and health-related quality  of life. Families experience chronic stress and exhaustion and the need for respite during their  child's inpatient hospitalization. Understanding this collective morbidity for the child and the  family, we see that we operate in silos where families, clinicians, and healthcare systems  are limited and often frustrated or at their wit's end with lack of sufficient resources to  navigate the child's needs. As a result, increases in hospitalization and healthcare utilization are  seen, not necessarily due to the severity of the child's illness, but because of the complexity of traversing these gaps in care.  Overall, the goals of follow-up care must be to break down these silos and these barriers faced by  children and their families. We must support families better with longitudinal care coordination,  and we need our health systems to have more robust pediatric home nursing. The definition  of medical necessity must include medical complexity. We also need to work on the transitions  between inpatient and outpatient care to ensure seamlessness. Models that facilitate the seamlessness include the adaptation of primary intensivists and post-PICU follow-up clinics.  Instead of operating in silos, we can communicate and collaborate to overlap and better serve children and their families in a true model of a medical home.  In conclusion, among technology-dependent, one quarter of tracheostomy patients die and 50% will  decannulate by five years. These children consume more pediatric critical care medicine resources  in order to achieve the same outcomes as their non-technology-dependent counterparts. They also  consume more family and community resources. Effective follow-up must focus on care coordination  for families, navigating complex health systems, and seamless transitions between clinicians.  Thank you so much for attending today. It's my pleasure to answer any questions. Thank you.

Video Summary

In the session entitled "New Technology for Pediatric Survivors," the speakers discussed various aspects related to pediatric patients with complex chronic diseases and the use of tracheostomies and ventilators. The first speaker, Dr. Tessie Oktober, focused on the decision-making process around tracheostomies and highlighted the challenges faced by families in making this decision. She discussed the importance of providing families with accurate information about the risks and benefits of tracheostomies and addressing their concerns and emotional needs. The second speaker, Carolyn Hodgson, addressed the transition of pediatric patients with tracheostomies and ventilators from the hospital to home care. She emphasized the need for comprehensive caregiver education and training, including tracheostomy care, medication administration, and emergency management. She also highlighted the importance of multidisciplinary teamwork, involving nurses, respiratory therapists, social workers, and other healthcare providers, to ensure a safe and successful transition. The third speaker, Dr. Nithi Pinto, focused on long-term follow-up care for technology-dependent children. She discussed the outcomes trajectory for these children, including mortality and decannulation rates, and highlighted the impact of their medical needs on the family and the community. She stressed the importance of breaking down silos in healthcare delivery and improving care coordination to better support families and ensure seamless transitions between inpatient and outpatient care. Overall, the session emphasized the need for a holistic and patient-centered approach in the care of pediatric patients with complex chronic diseases and the use of tracheostomies and ventilators.

Asset Subtitle

Pediatrics, Procedures, 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

Delineate the discharge needs of pediatric patients with new technology
Review the nutritional needs of patients with new technology dependence
Highlight post-ICU neurodevelopment challenges with patients who have new technology

Decisions Around Tracheostomy: Are Decisions Really Informed?
Tessie W. October

Transitioning Home With a New Tracheostomy and Ventilator
Caroline Hodgson

Meta Tag

Content Type Presentation

Knowledge Area Pediatrics

Knowledge Area Procedures

Knowledge Level Intermediate

Knowledge Level Advanced

Membership Level Select

Tag Tracheostomy

Tag Ventilation

Year 2021

Keywords

pediatric patients

tracheostomies

ventilators

decision-making process

caregiver education

transition of pediatric patients

long-term follow-up care

care coordination

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