1. What struck you most about the role Ellen plays as a care… 1. What struck you most ab

1. What struck you most about the role Ellen plays as a care… 1. What struck you most about the role Ellen plays as a care coordinator?2. In your clinical experience thus far, can you describe a complex medical patient you have cared for that would have benefited from services similar to those Ellen has described? Explain why.   Lingos welcome to the Cure Coordination meet the professional podcast today. I’m really pleased to have. Ellen is our guest. She’s going to talk to us about her role as a cure for denator. Can you tell us? About your program and the types of patients you see. Sure. I’m the nurse practitioner for the Children’s Complex Care program, which is a small program that was started about six years ago to provide intensive medical care coordination for children who have multiple medical needs are hospital. Has a very high level of acuity as a teaching hospital, we see the sickest kids not only in the area but even some children who come from far away to be at our hospital. Some of those children have very specific diagnosis. Their children with a specific cardiac disease or children with a specific type of cancer, or perhaps children who need an organ transplant for each of those conditions. For each of those services, there’s a team that addresses. The comprehensive needs that that child met family has. However, there are many children who are cared for at hospitals like ours who have multiple concurrent medical problems. These might be children who were born very prematurely or might be children with genetic syndromes. These are children who have medical problems that have that affect multiple body systems. So for instance, we may have a child with a genetic syndrome who has cardiac disease and respiratory difficulty and has an immune deficiency and may also have difficulty eating the kids. We take care of require a lot of behind the scenes work and. That’s the reason that our program came about in recognition of the fact that there are a lot of just as well. There’s a lot of stuff on a lot of different levels that need to be done for children who have high levels of medical complexity, we do things on a lot of different levels to help the entire team. And when I say the team, I mean. The medical providers, the nursing providers, providers who care for the child in the community at home and in the school setting, and also the children and the family themselves. As part of that medical team. So we try to bring everybody together to help the the child in the family. Identify what their goals are and help meet those goals. What a great service can you give us? A couple of examples of the types of patients you care for and the role you play in their care. Oh gosh, we had a little fellow who came out of the hospital who had been here for many many months. Hadn’t really been home, had been back and forth between the hospital and a rehab facility, and he had, like, I don’t know, seven or eight appointments in the first three weeks. Here’s this mom trying to figure out. How to take care of a child who was very fragile and also add a lot of technology. A lot of our kids have feeding tubes and a good number of them rely on help breathing, which may be oxygen or what we call non invasive ventilation which is CPAP or BIPAP or even a tracheostomy and ventilator. And we have some kids with central lines which are semi permanent Ivs, so that’s a lot. And then there’s a matter of getting a kid getting any kid but getting a kid with all that equipment to the hospital. And just as this parent was trying to get her footing at home, we’re saying, OK, you have to come back two times next week and three times the week after that. Twice the week after that, and so one of the things that I can do is sit down and say, OK, this is really important now. This can wait a couple of weeks or this. I’m not sure if we can stall, but I have a Direct Line to this medical provider, so let me give him or her a call and or send a message to find out if we can delay. Or maybe it’s possible for you to see Gastro Enterology and from analogy on the same day. So that’s only one trip to the hospital. I work with a Community health worker who works very closely with the parents on helping them schedule appointments, but also helping them learn to schedule their own appointments, helping them with transportation which sometimes needs to be in an ambulatory, even an ambulance. And helping them set that up and also helping them learn to set that up so some of the things that we do are very nuts and bolts. Things help identify which appointments are most important, help the kids get here, help coordinate the Mondays and times that are actually feasible. I also do something that I fall hurting the cats. Which is bringing the different matter members of the medical team together. I just saw a little boy today. He’s not a little boy anymore. He’s a big boy. He’s 12 now, but I was remembering talking to his dad about one of his hospitalizations when the program was new and he was new to the program. He has pretty severe neurological impairment and was coming in for frequent pneumonias, so he would come into the hospital and they would treat the pneumonia and he would be here for a couple of weeks and he would get better and then it would happen again. So what we were able to do in the complex care program was bring a group of his medical providers together. To see what can we do to interrupt this cycle and we did a bunch of different things. We adjusted his epilepsy medicines because when he’s on too much medicine, he’s sleepy, which makes him more likely to aspirate when he’s done not enough medication, he’s more likely to seize, which makes him more likely to aspirate. So we did that. We also converted his feeding tube from a G tube feeding tube that goes directly to his stomach to a different kind of tube called the GJ tube that extends down into his intestine so that the feeding is going in. His formula is going in further down. Into his body and he is less likely to reflux contents up from his stomach and have that landed his lungs and cause pneumonia. And we also involve physical medicine and rehabilitation and arranged for him to get. Botox, like Botox like Botox, which we use in clinical settings as well to decrease his saliva production? Doing that combination of things was really successful in decreasing his hospitalization. It’s not eliminating them because he’s. A fragile kid and he’s gonna get sick. But we were able to bring the team together and discuss a a multifaceted approach to getting him more stable. Your patients are so complicated. I can see why care coordination is such an important part of their care, and I’m particularly struck by your advocacy for your patients and families and the way you work to collaborate with a diverse medical community that’s required to care for your patients. I can see that it has such a positive impact on everyone involved. It sounds like a lot of work, so I need to ask what is your typical caseload like? We have 53 kids on our caseload. There are some who I talked to their parents three times a week and there are some who honestly I haven’t talked to for three or four months. We find that when children come into the program, there’s a trajectory. There’s like a hump to get over and that make take. One or two months and that may take four or five months, but we find that with time we can identify what the big issues are for the child and family we can get to know the medical team and we can put some plans into place. Sometimes we find parents just don’t know who to call. If your kid has cardiac disease and respiratory disease and a feeding tube and they’re coughing and throwing up sometimes the parents really don’t know if they should be calling the cardiologist or the pulmonologist, or the gastroenterologist, or if they should be calling their primary care provider. So we help them figure that stuff. Out so we find that over a number of months that was a lot of handholding from our Community, health worker, and a lot of like I said, hurting the cats between me and the medical providers. We can get the kids and the families to a place of greater stability. We generally don’t make them better. These are kids with serious and life span limiting conditions and sometimes we can improve their health status with the goal of having them live for longer, but often what we’re doing is trying to make their lives and their parents lives easier. And more stable, reduce unplanned hospital admissions, for instance, which are extremely extremely stressful and disruptive. Some of our kids we can really get to a point of stability. We’ve had a couple who really kind of did get better. The nature of their condition was that that they they got better and didn’t need us. We have some who. Things are more under control there. Their parents have it down there. Providers have it down, so they need us much less, but we’ll still say stop by and see them when they’re in the hospital or do a periodic review of their appointments and make sure they’re up to date on everything. And then we unfortunately have some kids. Just condition is declining because they do have degenerative. Conditions and we have some kids who were just. Always gonna be very present on our radar because of the nature of what they have. It sounds like even though your caseload is high as well as their, your patient acuity that some of your patients and their families become increasingly capable of managing for the most part independently overtime, which is of course. The goal of many care coordination programs. What are the parts of your job that you like best? I am in the really lucky position of getting to spend time with my patients and families and knowing them overtime and the opportunity to follow children overtime and see them grow into that lab. And as important to me to see their families grow into velop. We see incredible beauty, we see. Parents who celebrate. These milestones in their children that another parent would have missed entirely, who just loved their children, exactly how they are. I’ve just seen the great pain and great beauty coexist. I think people kind of think that good things and bad things are on a scale, and they pull out. You know they. They they. They equalize, and that’s not what happens. It’s not like a a good thing makes up for a bad thing or a bad thing cancels out a good thing, but I do see how parents live with great pain and children, parents and children live with great pain, but also great talents and great beauty, and that’s great. So as a palliative care provider, I completely agree. What parts of your job do you find challenging? Our medical system is very, very good at high tech stuff. It’s likes to fix things. It likes high tech solutions for fixing things. It has infrastructure for high tech solutions to things it doesn’t have infrastructure for care. The emotional toll and the physical toll on families is unfathomable. The other thing is that, like I feel like the hospital system where you know you’re admitted to like a generalist service and then you get various consults coming in. That’s a system that was developed, you know. However, many years ago it was developed decades and decades ago, and it worked. If you had to keep a patient who came in for something and you just needed to call a cardiology konsult and it was the the one hospital provider attending was overseeing the case and consulting with one specialist. But when you have a kid. In the hospital and four different services have been called to consult, and they’re all going in and out of the room. We’re communicating by text message or relying on people to read our notes in the chart. I liken it to, you know, a family built a house and it’s like a nice little house and they raise their children there and then the. I’ll just Child gets married and they build an addition onto the house. Then the next child gets married and you know, in some cultures there’s like these. These family houses, grown and grown and grown over the years, and it’s wonderful ’cause the whole families living together. But if you were going to build a house for that many people, you wouldn’t have built it the way that we have built our system. And so it’s in the same way that it’s great to have the whole family together. It’s great to have the expertise of so many different people, but how do you pull that together in a coherent system? I work on bridging that gap, but sometimes I feel like the whole system needs to be blown up and and recreated from scratch. What a great analogy. That’s my analogy for the week. OK, So what do you see as the most important skills for someone that does your job? I think you gotta be organized and which I I laugh when I say that because because people who know me and my personal life don’t think of me as the most organized person. But I think that. Organization might not be an innate talent it it originate quality, but it’s something that you can systems in place for. So we’ve been thinking a lot about that. We have a little spreadsheet for each kid where it has the kids name, and then it has all the different specialties the kids have ever seen. In their last appointment in their next appointment that can sink into a calendar week, we set it up on Excel. I didn’t set it up. Somebody set it up on Excel so that you can sync so I can know all the kids who are coming in on a given day, and so I can. Also every time I go to talk to that parent by. Check you know, I I I have like a reference point so I just wanna ask real quick so does that mean then you see patients primarily in the hospital setting and then your community health worker sees patients in their homes? We actually don’t do home visits. I would love if we had have the bandwidth we don’t have clinic time. We kind of follow our kids where they are so we do a lot of work by phone and some of that’s reactive, meaning that the parents call and they have a specific question and we answer that specific question and if it’s not a crisis we also try to stay. And while we have you. And checking on other thing, this was the medication picked up gicu haven’t been too. This specialist in a little while, is there a reason for that and some of that is proactive where we’re you know, well, we’ll call families on a on a regular schedule and we’ll check to make sure they have all their medications, all their supplies. If they get home, nursing or home. Other sorts of Home Care Services. Stats in place. Well, when they’re admitted to the hospital will stop up and see them. Sometimes I’ll round with the teens. Sometimes I’ll arrange a either team meeting just with the medical team or a family meeting with medical team and the family. And sometimes it’s just kind of pie. You know, we’ll just go in to say hello and and there isn’t a particular issue. That the medical team needs us for, but we just, you know, check in with our families to maintain that relationship. And similarly when they come in for outpatient appointments because we have that set up with the cell spreadsheet. I all know who’s coming in on every any given day, and I can wander by and see them. And sometimes one of the somebody in cardiology. That said I was coming by to see a patient, they said. Is there problem? And I said no, I’m just saying hello. She said you’re doing howdy rounds and I love that yeah I was just going to say hi and that’s just a good way of us building trust in continuity with the families. Sometimes I’ll touch bases with the family just to make sure they’re up to date on their appointments and their nursing and their meds. And I’ll do that in. Person while they’re here, sometimes I’ll address another issue I mentioned that I worked in GI and so if so I know that. So if the kids having like a problem with their GPU, Venice coming into neurology, sometimes I’ll stop up to look at that. But another thing that I sometimes do is I’ll go to appointments either because. I think the parent doesn’t really understand why they’re being sent to the specialist or they have a complicated medical history and I wanna. Be able to give the specialists in background or because I think that the parent doesn’t really understand why they’re going to the visit. You know, I’m at the point where I know most of the clinicians here, and I know this person might not be the most clear explainer, and so I can go and be a second set of ears or. You know, sometimes the parent knows exactly why they’re there. I have a mother who hates to go to the neurologist because her child has a static condition. She’s not getting better and it always feels like bad news. And so if I’m able, if I’m free, I’ll just go because you know, we’ve known each other for a long time and it’s hard for her to be there. You have a great job. So how do you see the future of programs like yours as a field? I don’t have any insight into where the field is developing, but. It’s very clear to me that as. Medical technology advances and as medical care gets more and more complicated and there are more and more players than care, coordination is going to be. More important than ever, because it’s just too complicated. It’s just too complicated. There’s too many moving parts to keep track of. There is, in my opinion, too much attention to the high tech and the breakthrough and the keeping people alive. For longer and have that be the default, more end better and families are struggling in social situations. The most common question I get asked is oh, is there something like that for older people? That’s just what I need for my mother. That’s just what I need. For my father. And of course you know the answer to that question is yes, there are all kinds of care coordination programs for older adults. So I think on that note we’ll wrap up. Thanks again for taking the time to talk about the very important work that you do for these children and their families and bringing the role of care coordinator to life for the students. That’s the end of this podcast. Please complete the discussion board below. Health Science Science Nursing NRS 411 Share QuestionEmailCopy link Comments (0)

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