AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
LAURI LEVIN: Hi. As Justine said, my name is Lauri. I'm with the American Academy of Pediatrics. Before I was with the American Academy of Pediatrics, I actually worked in a primary care office that provided a medical home to children with complex medical conditions. Some of the kids we picked up were with the NICU. The clinic I worked in was an inpatient and outpatient follow‑up clinic to children with complex medical conditions. So a lot of the model that I know as one where as an inpatient, as being able to do inpatient care we could really go into the NICU and actually, knowing we were going to be the primary care, actually do the discharge and actually create that seamless transition from hospital to home.
Obviously that's not a model that everyone can do, but it's something where at least the aspects of what we did to plan the discharge were very effective to make sure that families were comfortable and competent and really could be successful once they got home.
Part of some of our questions, Jennifer and I were wondering, as far as how to tailor our conversation today was to also know who here actually works in the NICU and provides direct care to children and families. If you want to raise your hands if you do.
Okay. That helps a lot. Because I don't want to sit here and walk through a discharge then. I would rather explain to you the elements to support it and what we need in our community and state to support that transition home.
Also, this is informal enough if you have questions about anything we say, please just raise your hand or just let us know. Thanks.
The learning objectives are really to understand what families experiences are in the NICU. Understand what are the vital elements to discharge planning, to learn how we can promote family professional partnerships, to really be a natural part of establishing a medical home, understand the importance of a medical home, and learn about available discharge planning tools and forms.
I think the first thing we need to start with is how are we going to measure success and really transitioning children from hospital to home. And that's an improved family satisfaction, improved mortality rates, reduced readmission, decreased readmission rates, decreased emergency room visits, decreased life‑threatening events and decreased utilization of high cost healthcare.
What we know is that when you have poor discharge planning, it results in worse outcomes, including the higher likelihood of readmission. Under conditions of limited discharge options, professionals often feel they have no choice but to send children home to families and communities that they consider questionable in their ability to provide the necessary care in a safe environment.
We also know through studies that comprehensive follow‑up care by experienced care givers is going to result in reduced life‑threatening illnesses without increasing costs; and the study showed this with high risk inner city infants and also reduce total days of pediatric intensive care by more than 40%.
We also know that if you direct financial resources to ambulatory comprehensive care again you'll see reduced admissions for children with chronic conditions. You're also going to have a reduced average length of stay in the hospital, and your hospital inpatient charges can fall. And in this study it showed from $10.50 to every $1 invested.
We also know that when stress increases in the lives of mothers of children with special healthcare need there's a higher risk of emergency room use. So, again, with all this data this really supports why we have to be very comprehensive in our discharge plan to really make sure that families have comprehensive coordinated care in their communities and that they're successful.
I think what we really need to do to really do a goodies charge plan for families is really to understand where they're at when they're in the NICU. A lot of families had no idea that their child was going to be born with any complication, and I think we really need to understand just where their emotions are. I think to know that they're going through a lot of shock, anxiety, fear, sorrow, guilt, anger, and if this is where they are, it really is going to have to tailor how we're going to provide care to them and really help them to get home and be successful. And a lot of that is going to be by anticipating what their needs are and not waiting for them to tell us what their needs are. Because a lot of times they don't know. They're still coming to terms with everything that's going on.
I think it's also really important that we understand when we say family, who are we talking about? And I pretty much use this slide in every presentation. It was put together by Family Voices and I love this definition. It says that: "Families are big, small, extended nuclear, multi‑generational, with one parent, two parents and grandparents. We live under one roof where many, a family can be as temporary as a few weeks, as permanent as forever. We become part of a family by birth, adoption, marriage, or from a desire for mutual support. A family is culture unto itself, with different values and unique ways of realizing its dreams. Together our families become the source of our rich cultural heritage and spiritual diversity. Our families create neighborhoods, communities, states and nations.
I think a critical step that the NICU can really provide to really make sure that we're successful is to really model and implement family professional collaboration. This is a key component. It's really going to help families become part of their child's care, be empowered to be the expert. Different components of this collaboration include: Promoting relationships in which the family and professionals work together to ensure that the best services for the child and family are met. It recognizes and respects the knowledge, skills and experience that families and professionals bring to the relationship. And it acknowledges that the development of trust is an integral part of a collaborative relationship.
It facilitates open communication, so families and professionals feel free to express themselves. It creates an atmosphere in which the cultural traditions, values and diversity of families are acknowledged and honored. It recognizes that negotiation is essential. And the acknowledgment of mutual respect for each other's cultures, values and traditions.
What this is really saying is that we're allowing families to be part of the medical team. We're going to empower them and give them the skills to know that we're going to do this together, that they're not alone and that they can really take on the care of their child and as other people said be the coach of the team.
To do this, though, we're talking about how do we set up care from the hospital to a medical home? And I guess before I go into my definition of a medical home, I kind of want to see what everyone's sense is of this term. I think there's usually a lot of different definitions that are going on out there.
So how many people would say if you knew that a child had access to a primary care physician in their community that that would mean that they have a medical home?
I think that's a very common idea that that's what people really think of, is that you have a primary care physician. I'm going to take it and I'll raise you a few notches. So when we say medical home what we're talking about is providing healthcare services in a high quality comprehensive and cost‑effective manner. It's provision of care through a primary care physician, through which other ‑‑ through partnership with other allied healthcare professionals in the family and it acts in the best interests of the child with special needs in their family.
That doesn't tell us as much as what are the specific aspects and unique elements of a medical home. When we say "medical home" we mean the care is accessible. It means they have the appropriate insurance to the care. It means they have, that it's close geographically, if possible. It also means that if this child, as an example coming from the NICU, has a kit card, vent and track all these supplies that they can actually get to the building, get in the door and be seen by that office.
It means that it's family‑centered. Families are recognized as the experts in their child's care and are brought in as a equal member of the team. That it's continuous, that it's comprehensive, that it's coordinated, and what I really, really feel is another key critical aspect is that it's compassionate. That the team genuinely cares for the child and family and that it's culturally effective. And for which the primary care, I always have to say primary care physician, but primary care child health professional shares responsibility with the family. And looking back to that definition of family, it may not be what we described as family. It's who to that child is their family.
So who is part of the medical home? This includes the primary care child health professional. It includes the family, the child. Allied healthcare professionals, the community, pediatric office staff, and, if necessary, the pediatric subspecialists.
The role of a medical home is to really gather all the information involved in the care of that child. And that includes the medical and the non‑medical needs of that child. To interpret medical information, families get so much information, especially if you have multi‑specialists in trying to understand what is the exact plan and what is everyone telling me and where do I begin. That's really a key component of the medical home is to really interpret that information and set a plan, set a course that everybody is on the same page, what are we going to do, when are we going to do it?
Also making sure they're teaching children and families on what is necessary and what do we need to do and making sure they understand all aspects of the care. And also essentially to learn from the children and their families. And also to mediate any potential conflicts. I think another key role of the medical home is as an advocate. Our role within the medical home ‑‑ sorry. I'm sorry, I'm an acronym person. I shouldn't have done that. It's children and youth with special healthcare needs. Sorry about that.
Again, with the mediating of potential conflicts another key piece especially in the NICU. What we always say the day a child is brought into the NICU is the day you start planning for discharge. I know very quickly you'll have insurance problems, that there's going to be a lot of things we need to set up. I can tell you right now there's going to be conflicts. Insurance, you're going to take time. It's going to be intensive. We need to make sure we're getting what that child and what that family needs to get home and not waiting until we decide we definitely need it, we're going to go ahead and get the process started now. It's something where you really need to be an advocate and understand how important it is that you get the things that that family needs.
The other key aspects of the medical home is that it's available 24 hours a day, seven days a week. After hours, if you needed something, this physician or this primary care health professional knows your child, knows the family you can make sure you can get consultation or access to care that you need after hours. Again that it's continuous through the child's life and essential medical record. All the different reports from different sub specialists and everything is coming in so you can coordinate and manage the child's care. Serves the entire family and is in the child's community.
What we know about medical home is very key to the outcome successes I noted the very beginning. That is, by providing a medical home, we do have less ERUs, we do have shorter length of stay. We have do that it's more cost‑effective. And we also have that we have provider and family satisfaction goes up, because they feel supported and because we have a more coordinated comprehensive system of care.
As far as doing a discharge planning walk through, I'm not going to do too much of that but what I am going to let you know is in your packets, in the back, what this is basically is it actually has the forms we used to actually set up the discharge for families. And what I would do is really share this with different Nick cues. I think what it allows you to do is really anticipate the needs of families. By really being more proactive and not waiting for a crisis to begin, but when you're in the NICU it's very vital that you do what I call pad the family. And that is, every service and every resource that they could possibly need, you go ahead and put into place. You don't wait for a crisis to hit. You don't wait for something to all of a sudden become a need you just go ahead and put it in place and if they need it it's there.
Sorry, I have to set this part up. I think the other key piece to note, though, is to really be effective and providing a medical home, and also to really understand what it takes for a NICU to do a coordinated comprehensive discharge, to really anticipate the needs, we have to be very realistic and understand what the challenges are. And that is that it's very time intensive. It takes staff. It takes time, and it also takes the knowledge of community and state resources and figuring out how are they going to stay up‑to‑date to know what's available in the community and in the state for children and families. But we also have to recognize that they're very busy in their day‑to‑day activities and that it's very hard for them to figure out how to do this while still serving many children and families with very intensive needs.
So one of the things we like to say is that trying to provide this type of care is like one of the analogies it's like trying to build an airplane while flying it. So if you've seen this before, this might be familiar. (Video clip).
I think that is truly sometimes how it feels, though, is because we know everybody that works in the NICU and we know people out in practice really are doing the best they can. We know that they're doing a lot for their children and families. And again this is time intensive. It does take additional staff. It is an issue about time and reimbursement and really staying on top and really feeling comfortable going out on a limb and advocating on behalf of children and youth and really anticipating needs.
Obviously it's something we feel very compassionate and very passionate about doing but we're very aware there are very real barriers and challenges to doing it so a lot of time we like to show this to say we know there's challenges but it doesn't mean we're not going to stick to it.
Again, I think the big piece is to know about getting ready for discharge from the NICU is really to do a good psychosocial assessment. Not just because we know that families are going through a roller coaster ride of emotions but because we really need to understand what the reality is for them in their own community. What are the services and gaps that they're going to need upon going home and where are they at? What kind of help do they need. Again, as I said assessing and anticipating needs. A key example of that would be I've walked in on a discharge kind of near the end when they finally were aware that the community physician that they were going to work with was not comfortable providing care for them. So we were going to pick this child up. We were getting ready to go home. I'm looking over everything, and I say do you have a handicapped placard? The mom looked at me and like what are you talking about? Why would I need a handicapped placard. I said well you have a kid cart, vent, trach, G tube, medications, how are you going to get around? And she was like, yeah, that would be great. I didn't know that I could ask for that. But if you thought about this mom having to go to the grocery store and have to pack up her child because who knows what the nursing shortage is at that time, if a nurse comes, or if they even got approved. She's just trying to go through her day. We have to anticipate some of the bigger things, but I think sometimes the most simple things that help families through the day are the things that get missed.
So a lot of the things on the forms I gave you really walk you through to understand how to help families identify what supports and services they have, who are the people in their community, friends and family that we could actually bring into the NICU and train. This is a great time to say tell me everybody who you could possibly say will help support you so that we can train them on your care. The same thing for the nurses, having the nurse come into your home is a very vulnerable situation, and making sure that you actually click with that nurse is very important. So a lot of times we would make sure the nurse actually came into the NICU and met the family and trained on the child's care and made sure that everybody was comfortable.
Another key example is we did that and a mom started sneezing like crazy when the nurse came in. She has a cat. I'm glad we found that out. She had strong allergies to cats. That nurse could not go in the home without doing that. Something even that simple. Also making sure that the nurse was even comfortable with the child's care. So again anticipating needs and really working with the family and making sure everyone, even once we get out into the community, is familiar with the child and comfortable with the child's care.
Another key thing is modeling that family professional collaboration, really making sure that families understand everything, feel like a vital and equal member of the team. It helps them understand what to expect when they get out in the community with their primary care health professional. Making those referrals to needed services and also very much defining roles. Let's say again you have a child with ten different conditions and six specialists and on multiple medications and you get home and the child has a fever, who are they calling? Are they going to call the neurologist? Are they going to call the primary care physician making sure that the family knows who is in charge of what who to call in when and make can sure it's very clear before we go home.
Also, to help families do that, another thing in your packet is some information on care notebooks. That's something that we used a lot that helped families create their own medical record so they had access to all the same medical information we did so they could actually help coordinate their child's care and become the experts in their child's care and take this with them to early intervention. Take it to other specialists and keep everybody informed on what's going on. We started that care notebook, because at the time when we gave that to them, there's too much for them to really hold onto and grasp. So we create that and tell them to bring it in into every visit and we help them fill it out until it's something they can take on.
Here's what I always do, the what can you do on Tuesday. The information I think that we can just share with different people is that we really need to be proactive and not reactive. We really need to make sure we're anticipating the needs of what families need to be successful in the community. We need to start planning for discharge the day that child is admitted to the NICU. A lot of times sometimes we don't know if that child is going to survive. And so we wait and we wait and wait. But children do survive, and a lot of times we're waiting until the very end to set up discharge and some of these programs can take a year to actually get approval for like such as nursing services to even find nurses that are available to the more proactive we are and the earlier we start the better success we'll have in the community.
We also need to partner with families and decision making. We need to empower families to become expert in their child's care. And it's really important that we come up with ways for people to become aware of and maintain community services and state resources. Having some type of database, having a website, having a resource guide, making sure that people have access to that information is so key, and a lot of states have like the two on one lines, the question is how do people know about them, do the NICU staff know about them, how are they keeping track of resources. So a lot of times it's even combining efforts and making sure people know of what's available.
Another place that you can go is our website, which is www.medicalhomeinfo.org. A lot of the resources and a lot of the tools for providers and for families is available on this website.
Another key thing here and especially because our model again we actually walked into the NICU and we were already very comfortable and caring for these kids, what if you have to locate a primary care physician in a community and you want to make sure they're comfortable providing for a child with complex medical conditions? There's a section on this website on tools for providers. And it actually has different resources where they can learn more about different conditions and also forms they can use in their office, different practice policies and procedures they can implement, from a time management standpoint to really better care for these kids, how to negotiate insurance contracts so they can get better reimbursement to care for these kids and take the time that's needed. A lot of that is on here.
So, again, this is what we wanted to go through today to make sure that we understand what we need support for, and I think the most important thing to say is that I think what we do really can make a difference and I really think that children with special healthcare needs, their experiences in the NICU, I'm sorry, family's experiences in the NICU really can set the tone for how they are in the community. By really providing this type of care and giving them these skills and giving them the support and resources really will lend itself to the success they have once they get home. Thank you.