Communication and Support for Families with Complex Medical Conditions – PediaCast 442

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  • Over three million children in the United States are challenged by complex medical conditions. This week we discuss communication and support between affected families and their providers. Our panel includes Dr Garey Noritz (chief of Complex Care) and Marilyn Friedman (Child Life specialist). Carrie Holt also visits the studio. She is a mom whose family has faced many challenges… and rewards… as the result of her son’s complex condition. We hope you can join us!

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  • Communication and Support
  • Families with Complex Medical Conditions

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Announcer 1: This is PediaCast.

[Music]

Announcer 1: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.

Dr. Mike Patrick: Hello, everyone. And welcome once again to PediaCast. It is a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital. We are in Columbus, Ohio. 

It is Episode 442 for September 26th, 2019. We're calling this one "Communication and Support for Families with Complex Medical Conditions". I want to welcome all of you to the program.

0:01:00

We have terrific information for you this week, especially if you are a family facing a complex medical condition in one or more of your children. The number of families challenged by complex healthcare is on the rise as medical advancement saves the lives of children whose conditions resulted in early death in the past. 

Today, there are approximately 3 million children living with medically complex conditions in the United States. And it's very important for pediatric providers to communicate with and support these families as they make what often amounts to a very difficult and sometimes confusing journeys. 

Our goal for today's discussion is to be helpful really to three groups of people. First, the many pediatric providers in the crowd who are called upon to communicate with and support these families.

Second, to the many families out there who are challenged by complex medical conditions, especially those perhaps frustrated by their provider's communication skills and level of support. We hope to empower you with ideas for increasing satisfaction and effectiveness as you engage and partner with your child's medical providers. 

0:02:20

And third, everyone else. All of us know a family or two making this journey. Hopefully, this will give us some insight into the challenges they face. You never know when a complex medical condition will land itself squarely in your immediate or extended family. It's always good to have some basic understanding of the challenges we are likely to face in that situation. 

So in other words, we can all learn something as we consider communication and support for families with complex medical conditions. 

I have a really fantastic panel for our discussion today. Dr. Garey Noritz is director of the Complex Healthcare Program at Nationwide Children's Hospital. Marilyn Friedman is a child life specialist at our institution. And Carrie Holt is a mom whose family has faced many, many challenges and rewards because of her son's complex medical condition. Much more on that in just a few minutes. 

0:03:20

First though, I would like to remind you, you can find PediaCast in all sorts of places. We are in the Apple Podcast app, iTunes, Google Play, iHeart Radio, Spotify, SoundCloud and most mobile podcast apps for iOS and Android.

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We also have a Contact page at our website. If you head over for pediacast.org, you'll find that if you would like to suggest a topic for a future program, or you have a question or a comment you would like to share with the audience. 

0:04:03

Also, I want to remind you the information presented in every episode of our program is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. If you have a concern about your child's health, be sure to call your doctor and arrange a face-to-face interview and hands-on physical examination.

Also, your use of this audio program is subject to the PediaCast Terms of Use Agreement which you can find at pediacast.org.

So, let's take a quick break. We'll get our panel of experts settled into the studio and then we will back to talk about communication and support for families with complex medical conditions. That's coming up, right after this.

[Music]

0:05:13

Dr. Mike Patrick: We have three terrific guests visiting the studio as we consider communication and support for families and in particular, communicating with and supporting families facing complex medical conditions and difficult situations and decisions. 

Dr. Garey Noritz is well suited for the conversation. He is chief of the Complex Healthcare Program at Nationwide Children's Hospital and a professor of Pediatrics at the Ohio State University College of Medicine. Thanks so much for stopping by today. 

Dr. Garey Noritz: I'm glad to be here. Thanks, Dr. Mike. 

Dr. Mike Patrick: Yeah, really appreciate it. Marilyn Friedman is child life specialist in Nationwide Children's. She spends each day communicating with and supporting children and families as they cope with their healthcare experience. We're very happy to have her perspective as well. Thanks for joining us.

Marilyn Friedman: Thank you very much, it's my honor. 

Dr. Mike Patrick: Yeah, I really appreciate it. Last but certainly not the least, Carrie Holt is in the house. Carrie is a mom whose family is making the complex healthcare journey as we speak. Her son Toby has been through a lot since birth, including many hospitalizations and over 50 surgical procedures. 

0:06:15

She knows firsthand the importance of communication and support from healthcare providers and brings much insight into what families need, what works, what does not work. Her contribution to our conversation will be invaluable to the healthcare providers in the crowd and relatable to families facing similar challenges. 

So a very warm PediaCast welcome to you, Carrie. Thanks so much for being here today.

Carrie Holt: Thank you for this opportunity.

Dr. Mike Patrick: Yeah, I really appreciate you stopping by. And I really want to start with you. I think it gives a lot of perspective for us if you give us a little bit of a background and your family's journey with really being faced with the challenge of a complex medical condition within your family. 

Carrie Holt: So my son, Toby, was prenatally diagnosed with spina bifida and hydrocephalus. That is a neural tube defect that has an open hole in the back, and so there's damage to nerves in the spine. 

0:07:08

Hydrocephalus is extra fluid in the brain so he required surgery the day he was born to close the open hole on his back, and then four days later a surgery to put in a shunt which treats the extra fluid in the brain. When he was two and a half weeks old, I always say that life threw us another curve ball in that he went into respiratory failure. 

And we spent over 64 days here at the hospital, 30 of those were in the pediatric intensive care unit. And he was literally fighting for his life. He ended up with a tracheotomy with just a tube and he started to breathe. And then, he's on a ventilator. When he went from the hospital, he was on that ventilator 24 hours a day, 7 days a week. 

He has central sleep apnea. So in the real deep sleep, his brain doesn't tell his body to breathe. He's also at home on a feeding pump, with a feeding tube in his stomach 20 hours a day. 

And so, since then, our journey has just taken a lot of twists and turns. Like you said, he's had over 50 surgeries. We'd have to call a squad because of shunt failure. We have had bowel obstructions. 

And today, I sat down to list all the specialists we've seen and regular doctors. It's over 15 through his lifetime. 

0:08:21

Dr. Mike Patrick: That is a lot. Do you have a medical background going into this at all?

Carrie Holt: So ironically, I was a nursing major, my very first year of undergrad. And at the very end of the year, after taking microbiology and biochemistry, I switched majors, education. So I've had a little bit of experience. I've always been fascinated with medical things but no, not officially. 

Dr. Mike Patrick: I love the way that you were not real afraid of the real terminology, but you were quick to explain exactly what it was that you were talking about. And I think that that really is a great model for a lot of providers out there because we can kind of make both mistakes. We can say big words because we just use them every day. They're part of my vocabulary as medical providers.

0:09:08

And so, it's easy to just throw those out there. And then, there's the other way where we're afraid to use them, and then try to find easier words but it don't really exactly explain that. But then our families are going to hear those complex words elsewhere. So I like that, using them and then explaining. 

Do you find that kind of a helpful thing as you've gone along, too?

Carrie Holt: It has been. And it's a tool that I've used being a part of Family as Faculty because your audience that you're talking to about family-centered care may not be nurses or doctors. And so it's easier to even just communicate in the community to other families who may not have any experience with it. 

Dr. Mike Patrick: Yeah, absolutely. You mentioned our Family as Faculty Program. Tell us more about that. What exactly is Family as Faculty? 

Carrie Holt: So Family as Faculty is a group of parent volunteers and, sometimes, has been patients in the past who have been treated at the hospital. Usually, their patients, their children, or themselves have been kind of been long-term patients at the hospital, but not always.

0:10:14

And our main goal is to teach about family-centered care from the family's perspective. So we do that through sharing our stories, through PowerPoint. Our main three goals we try to communicate is that children are children all the time even when they're sick,. We're people, patients are patients. Our patients are not always children, they're teenagers too or even adults. That best care comes through collaboration between doctors and families. 

And that the families also have things going on outside of the hospital that the providers, doctors, therapists know nothing about. And so, to take that into consideration, there's a whole person there with a lot stress, not just in the hospital environment but also outside of that environment. 

Dr. Mike Patrick: So you raise awareness and then kind of act as a support too for other families who are going through this, right? 

0:11:02

Carrie Holt: Yes. 

Dr. Mike Patrick: Marilyn, how did the Family as Faculty Program got started here? Give us a little bit of a background on that. 

Marilyn Friedman: Well, I believe it started out from the Patient Advisory Council. And they were a spinoff of that group back in almost like 20 years ago, essentially. This was a group of parents that decided that they needed to tell their stories to educate the staff and other people out in the community, whether it's nursing students, residents, medical students, anybody who would have any contact or commitment with knowing what goes in a hospital setting.

And I believe that our group, Family as Faculty, provides an amazing service. They have amazing stories to tell. They communicated in ways that families can understand, as well as staff members can understand them. And I think that they have been a major part of our family-centered care program here at Children's.

0:12:27

Dr. Mike Patrick: Yeah, absolutely. And I think that the whole idea that communication really is the cornerstone of the support then that you get with your medical providers, that families really rely on communication. And the fact that a group of parents came together to say, "Hey, we can do this better and we want to support this as a notion."

Carrie, tell us, how do you fill communication and support? How's that been important through Toby's medical provider? Tell us, the communication part of it is a big challenge sometimes. 

0:13:03

Carrie Holt: Yes, definitely, it can be. Communication and support, I think, can make or break your journey, if I could say it that way. It's already difficult with your child, but when you're waiting for days to hear back from a doctor or a nurse to try to make a decision about something or needing prescription, that can be difficult. 

Support and that communication, when it's good, when it's going well, it allows Toby to have a life outside of his medical condition. And I also believe that communication just allows us to make the best decisions for him. I have really appreciated  as we have communicated with Dr. Noritz -- because he is one of Toby's doctors -- that he lays out both sides of a decision. 

So we might be discussing a decision about a medication and he'll weigh the pros and cons. Or we'll discuss just major medical aspect of his care and he will just help us see both sides and explain it in terms that we can understand and also provide some of the medical terms. Sometimes, there may be things in the after-visit summary that we can go home and research. 

0:14:24

Communication is also coordinating care between his providers because when you see that many specialists. And it's a whole person. So you're treating a whole person, but those decisions can impact different areas of his life or a different doctor or things like that. 

And so, when you're looking at the patient as a whole, they're more than just sometimes those test results and the numbers . It's looking at the symptoms. It's looking at how he's dealing with certain symptoms. That's been really important. 

Dr. Mike Patrick: Especially when we think about complex medical conditions, just the fact that we use the word complex, the knowledge of what's happening underneath can be difficult to understand. And so, having good communication skills and being able to explain terms as you go, and incorporating the big words to plain language and explaining where we need to, I guess that's sort of one stopping point right there for parents to give yourself permission when the doctors talking to you to say, "Hey, I don't understand what you're saying. Break this down for me and help me understand."

0:15:30

And of course, people are going to be sorts of learners, and some folks that may help as if it's visual versus explaining it in a different way. But it is okay to stop and say, "Help me understand," right? And that's part of communication.

Carrie Holt: Definitely.

Dr. Mike Patrick: And then, I like that you brought up the whole decision thing and each family is unique and different. And so, without that knowledge, it's hard then to make decisions because you really don't even know or understand the consequences. So, you have to have that knowledge base in order to make a decision and then that really becomes risks and benefits of every decision and like looking at it from every different angle. 

Like you say, each family is unique. There's not really a one size fits all with that, right? 

0:16:13

Carrie Holt: Right. I've appreciated it when doctors also give a little bit of their opinion about the situation because sometimes, they may expect you to know more than you know or I feel like a lot of the pressure's on my shoulder to make the right choice about something. And I will often ask this question, "If this is your child, what would you do?"

It kind of brings it closer to them, I think, in just that empathy. And I've noticed that when I do that question, I've gotten really honest answers about the pros and cons. And again, they give an opinion but they also stop, present the other side. And that's been very helpful.

Dr. Mike Patrick: Because their situation is also unique.

Carrie Holt: Right.

Dr. Mike Patrick: And so, they're looking at it maybe from a little bit of a different lens and framework than what your family is experiencing. 

But in my own, and I don't generally take care of kids with complex medical conditions unless it's in the emergency department. But we still see that a lot in medicine, when families ask, "What would you do?" And it kind of makes me feel a little uncomfortable because I don't want to tell them what to do when there really is multiple ways that you can go.

0:17:22

And then, the third thing I really liked what you said is the whole idea of families need support in lots of different ways, not only medically, but also emotionally and spiritually. And without that really good core of communication between the provider and the family, the provider may not pick up on the fact that you need some other types of support and then gets you pointed in the right direction. So just having that communication, just so important.

So, Dr. Noritz, you've heard all these. You must have had some thoughts in your head about how this is best accomplished from the provider's standpoint. How do you, with you're a complex medical patients, how do you keep that core of communication and knowledge and decision making all in hand?

0:18:04

Dr. Garey Noritz: Well, the most difficult part perhaps for most doctors is what I was just doing for the last several minutes which was listening. And just listening and not thinking about what's the next thing I'm going say and how am I going to get to the next item on my medical agenda. But just listening and hearing, this is what the experience has been like for the family I'm sitting with the illness that the child has. 

And so, the more you listen, the more you learn. And the more you listen, the easier it is to then take the reins a little bit when you've heard the story to say, "Okay, well, here's what's going on and here's the next thing that we have to decide." 

And so, we've sort of gone this big pendulum kind of thing in medicine. It used to be, "Well, I'm a doctor, I'll tell you what we're going to do and whether you like it or not, you would do it"  to "Well, this is a completely free country and here's the facts and you decide what you want to do and let me know when you've made your decision." To really where I think we ought to be in the middle where we discuss the pros, the cons, the benefits, the burdens of these different treatments that we might be proposing and helping the family come to a decision about those things from their values.

0:19:32

But if I don't know what's your values, if I don't know what makes Toby tick, if I don't know what is the mood in your house or the belief in your house about certain things, then me saying, "Well, if it was my kid, I would do it this way." And so, I'd just always think about this like "I am Giants fan, Toby is a Cowboys fan." So we're not really going to see eye to eye on certain things. 

But there's a lot that we can, that understanding what goes on in his family, for Toby and for his family about how to approach these different things. And so, I can say, there's this, there's that, some doctors will say this, some doctors will say that. Some families have done this, some families have done that.

0:20:23

All of these things are reasonable but we need to figure out what's going to be best and what's going to feel best for your family. And I can guide and I can even give my suggestion, I can even say, "Hey listen, it was my kid and I did this." 

But again, that's for me and I can also say, "But to not do it my way is okay, too." And we can still have a conversation and we can still work together productively because the advice I'm giving, I don't even know that that's right, either. 

Dr. Mike Patrick: Do you use past experiences with other families? Not necessarily breaking privacy, but just you know here's a family that was in a similar situation that may have made decision A while a different family made decision B. And this is kind of where things went, without obviously saying who the family was. But you call upon those past experiences as you're helping make that guidance. 

0:21:19

Dr. Garey Noritz: For sure, and to some extent, every situation is very unique, and so you can't exactly say, "Well, the other family chose this and this is what would happen, and that's what's going to happen if you choose the same course of action." But I can also bring to, "Well, they made this choice and this is how they then dealt with having made that choice, good, bad, how they felt about it afterwards." 

But you can't ever... Each situation's still unique to really...

Dr. Mike Patrick: Yeah, yeah, and the priorities of families are different and the tolerances of risks and which outcomes going to happen is going to be different. And so, it really is very organic, right, with each family? 

0:22:09

Dr. Garey Noritz: Right. 

Dr. Mike Patrick: The other thing you mentioned is -- and I think really important -- at the beginning of this is just listening. Listening takes times and the way that medicine works today, a lot of providers don't have a ton of time. 

How do you approach that dichotomy of needing to see all the other patients in the waiting room but really giving families the time that they need and deserve? 

Dr. Garey Noritz: So it's really hard and I've had this discussion with my team today because we saw a patient for the first time a week or so ago who needed basically the entire morning for herself and her child. And it's a balancing act of number one, we have a certain number of patients we see during the day now. We're lucky we're not like the general pediatrics office which sees tons and tons of patients for sorts of simple things. 

Because we have complex patients, we have a bit more time than others. We have a little bit of wiggle room built into the schedule so that if I'm spending a little bit more time with this patient, the dietitian can spend more time with that patient and we can sort of keep the clinic moving. 

0:23:20

I also think that hopefully, the families that come to our clinic are a little forgiving of our taking more time because they know that they'll get more time when they need more time. 

 And then, the last thing I'm also just thinking especially when I'm first meeting somebody is to say, "There's so much here and this is a story with so many rich details. But let's start with the first two or three most important things. And you tell me what are the most important, or three most important things that you want to cover. And then we'll see you back and we'll see you back as often as we need to see you back until we get to the whole story."

Dr. Mike Patrick: Marilyn, as you work with families, there often is from the provider standpoint, there's all of this information that we have that we want to share with the family. And sometimes, it's difficult information, difficult decisions that need to be made explaining complex conditions. And as the provider, you feel like you want to put that all out there.

0:24:27

And you see it from the family's perspective that sometimes, maybe families don't need that information all at once or maybe even aren't ready or don't desire all of that information at once. How do you balance that? 

Marilyn Friedman: Well, you're right about that, because I think that providers need to notice. And it's not just the provider but it could be another person in the healthcare team or we call the multidisciplinary team, and which would involve the doctors, the nurses, social work, and child life dietitians.

0:25:01

Anybody who would be taking information from that family, they can begin to see when family begins to get the look of their eyes being glazed over or deer-in-headlights kind of thing. So you're driving down the road and you see a deer and the deer looks at you and you're going. "Oh, my goodness." 

We as healthcare workers need to take that step back and say, "Let's take a deep breath. How can we help the family cope with that information that they're being shared with?" 

I also think that, I think it's been said that one size does not fit all. So every family comes with their own unique family history. And the child could be one of many in a household. And I think that the parent, when they're getting this information, their mind may be running from one place to the next. 

0:26:07

And the key as providers is we need to begin to sort that information out, and how can we help them zero in on what it is they need. Whether I go back and let's say, I'm meeting Carrie and Toby who I've worked with up on the floor and I'll say, "You know, this admission is different than previous admissions because Carrie's giving me different information. And the information I'm getting from Toby is totally different." 

So then, I can go back to the team and say, "You know, I observe this, this is part of the conversation I had. I just want to give you that information."  

So I think there's a big picture we have to look at. I think it has also been said that oftentimes families need to have things repeated to them again. And sometimes, what you may say to them on one day, and they may appear to understand it, the next day, they had a chance to think about it and maybe discuss it with other family members and say, "You know, I didn't quite understand what you were saying. Could you repeat that to me?"

0:27:27

And then, we need to try to empower families so that they can ask that healthcare provider to repeat that information that they might have received the day before or even an hour or five minutes ago depending on the situation and the way how severe the situation is, or how non-severe. Because a child may come to a clinic and on a monthly basis and they will get certain information but their story changes a little bit. 

So I think, as healthcare providers, we play a little bit of detective work trying to figure out where they are at that specific time.

Dr. Mike Patrick: And some families want to know everything and all the details. And for others, that's just going to be completely overwhelming. And so, really, the cliff notes are going to be a little the better way to go. At least in that moment in time. 

0:28:28

Dr. Noritz, is that something then that you have to really sense the situation and read those non-verbal cues and try to get a sense of "Do I share more? Do I kind of pull back at this point?" I'm sure that can be difficult. 

Dr. Garey Noritz: Yeah. I think it's very much having a conversation with the person, whether you're a doctor or a patient or just two people talking about something serious. You have to be able to read non-verbal cues. 

I'll just say that Marilyn said that I think is so important is that the nature of the multidisciplinary team, there's a certain way that patients talk and family members talk to the doctor. Despite everything that I feel like we've tried to do to sort of break down the sort of ivory tower piece of it, there's still very much "Well, the doctor's up here and the patients are down here."

0:29:20

And so, the families are oftentimes a lot more honest with the direct caregivers, the nurses, the family, the child life specialist, the respiratory therapists, things like that. And they're able to share a bit more, they're able to also hear what happened after I left the room and have the family reflect a little bit on what the medical team has just said. 

And then, I don't feel like it's telling on them for the child life person to come back and say, "You know I heard you tell them this thing. I don't really think they got it." Or, "I really think you ought to go back and try to unpack some of the emotion around it a little bit more." I mean, that's their expertise and that's what they're there for and that's why we value them so much. 

0:30:09

Dr. Mike Patrick: Yeah, it really does take communication not only with the family but also with other members of the medical team to say, "Hey, are we all on this? Do we all understand it from the same point of view?"

Dr. Garey Noritz: Yeah.

Marilyn Friedman: I think another thing is you bring up a good point, is that oftentimes then when the physician leaves the room that the child life specialist gets to kind of observe how the family is interacting and how they have digested that information. 

One of the things that I feel like I need to bring up is that we see a lot of people with very different cultural backgrounds and language barriers. And so, how we communicate with that particular family may be different than we may communicate with another family. 

0:31:00

And I think, again, it takes someone to kind of sit back and kind of look and see how the effect of that information because a lot of times that information is being given by an interpreter and that interpreter has a special role. But as a healthcare professional, our job is to look at the family and give the information so that they feel that we are communicating with them. And that's another whole different scenario but also affects the communication and how we balance ourselves in the hospital.

Dr. Mike Patrick: And when we talk about time with the family, when you have this and an interpreter to communicate back and forth, it is easy to sort of start to skimp on that time a little bit. And really, you need more of it.

Dr. Garey Noritz: For sure. 

Dr. Mike Patrick: So Carrie, you've heard our experts talking about communication and sort of how they go about it and reading those non-verbal cues and trying to get a sense of when a family really thirsts to know more and when maybe it's time to pull back. Did you experience those things or have you experienced those things that they're talking about?

0:32:21

Carrie Holt: Definitely. Yes, I have. And there are moments when you do have that deer-in-headlights feeling that there is so much information coming at you. And immediately, I often talk about this when I speak is that I feel like any family that walks to the door of the hospital is somewhere in that grieving cycle, whether it's the shock of a new diagnosis or even just my child has an appendix that is not working well and I need to come in through the ER.

And so, maybe they're in shock or maybe they're upset or in denial over new diagnosis. Maybe it's juvenile diabetes or whatever it might be. And so, I think it's important for those providers interacting to understand. I know that for me, it was very empowering when I could label that I'm functioning somewhere in that cycle. And sometimes, I'm experiencing more than one emotion at the same time. 

0:33:19

And so, it's important for me to also take notes. This is probably one tip that I would tell families is to keep a journal, keep a medical binder, write down the things when you're in the moment, when you're listening to rounds or you're listening to a provider in the office. Because then you can go back and even stop them and say, "Can you say that again? Can you spell that for me?" So you can go back and digest it and be able to speak with other family members.

Sometimes, you do talk to other families that may be in a similar situation -- what did they do, how did they make that choice for surgery or a major medical decision? And so, I think that especially Dr. Noritz talking about their body language is so important to just how they communicate information.

0:34:14

Dr. Mike Patrick: Yeah, absolutely. Marilyn, as we talk about just having these conversations between providers and families, communication style itself can come into play. And some folks just have a style that maybe more passive, sometimes more aggressive. You may get right to the point where you might have a parent that kind of takes them aback if someone gets right to the point and they'd rather sort of ease into the information. 

How does communication style, because that can then sort start to build some conflict between a provider and family if we don't understand the style that each other is using, right?

Marilyn Friedman: Absolutely. At Nationwide, we have, for many years, had learned about medical literacy. And what that term means is learning how a family learns or can take information. And so, that is a very key component. 

0:35:18

And I know it's kind of a big word to describe how we get information. But as you said, every family's coping style is different. And I think that, again, listening to the family, watching the family, watching their body language, watching how they perceive you giving the information to them, how they also can take in the information that is being delivered to them. And just be respectful of each family in terms of how they take that information. 

Because again, respecting the individual, the child, and the parent or guardian, how they are interpreting this because remember the child is sitting there,  oftentimes listening to this information and how are they taking this in? And this often frightens them and how a parent can then explain it. 

0:36:28

And that's where other members of multidisciplinary can come in and help kind of maybe sort some of that out and help the family understand it. And also, the child life specialist helping the child understand what information has been shared with them if they have any questions. 

And we can do this through play an d trying to just have general conversation in terms of how did you feel when the doctor gave you the information about, "Today, you're going to be having a procedure. You're going to go down to have a CAT scan?" Let's say that's a CAT scan. Well, "What is a CAT scan? Does that mean that is a cat going to be there?" Or what is it? 

0:37:16

So trying to explain what it is by using age-appropriate explanations for the child. And sometimes, families also appreciate that very basic way of describing it to them because they may not have actually understood the information that the team had just provided to them. 

Dr. Mike Patrick: Yeah, really important points. As you work with families, when there has been kind of a disconnect between communication styles, let's say between the parent and the physician and you're kind of rallying with the family and seeing sort of things from their perspective. Maybe they feel like the physician's being too short with them or too blunt and kind of in and out versus another time maybe the mismatch is the opposite. And the family really just wants the details and they feel like they're not being told the details. How do you advocate for those kids and kind of get the family and the provider back on track so to speak?

0:38:21

It's not an easy question.

Marilyn Friedman: It's an easy question.

Dr. Mike Patrick: But I feel like it's a fairly common situation. 

Marilyn Friedman: I think it is and I think I don't know that I can give a total answer, but I'll do my very best. I think because in our medical world, people move very fast. Situations change rapidly, especially if a child is very ill. Or even as the situation becomes less emergent or urgent that the child life specialist can oftentimes go in and kind of say, "You know, this situation may not be exactly the way we want it to be."

0:39:20

But again, they have to be careful because we work in the situation where we work with the team or working with the parents. And how do I bring people back together again is a little bit tricky. And I think that I would probably end up going to the social worker because that would be more our collaboration to figure out how to maybe help the family understand so that they're getting the information they need. And that healthcare providers are getting the information they need.

And it may be on a nursing level, that sometimes families feel that the nurse has not been as understanding or as empathetic as they had hoped that they would be. And I think that it's a very large problem. 

0:40:24

We have to take a step back and walk in the parents' shoes and see what it is that they are dealing with. Because, I think, sometimes when the families come to the hospital, they've left certain things undone at home. And if they are in the complex care clinic, the child is ill and needs to be directed from the clinic to the hospital, all the things that you left undone that you need to kind of put together. So they need someone who can help them sort out, "How can we help you get through this? Give you maybe step by step. Okay, do you need this and this?"

0:41:15

Dr. Mike Patrick: Absolutely. And I think that empathy sort of goes both ways, that certainly, without question, providers need empathy for walking the shoes of the families and the parents and what they're going through. And to some extent, I feel like the parents also benefit from some empathy on what the providers are going through, that like if someone does seem short or they're not giving full answers, maybe it's because of experiences that they've had with other families or the fact that they have to see ten more patients that day.

That doesn't excuse it. And we still want to find ways to communicate effectively. But I think sometimes, maybe it helps ease the bad feelings if you do understand where the medical folks are coming from. What do you think of that, Carrie?

0:42:07

For me, as the provider saying like, "Oh, parents need more empathy on what we're going through. And then, parents are going through this really complex very personal thing, but they really does kind of need empathy on both sides, right?"

Carrie Holt: I agree. And actually, there's something I thought about just related to this conversation that the best communication is when there's respect on both sides and there's give and take on both sides. I know when I'm able to still communicate myself clearly or maybe not even that, but just to not beat like in a defensive mode or just show kindness in my communication with the provider. I feel like we get so much farther, the results are better.

And I think there's just that level of trust on both sides that can either be built up or broken down through the type of communication that's going on. And sometimes you have to trust the doctor very quickly because it's an emergent situation or you need to make a decision quickly about something.

0:43:10

And so, it's so important I think to understand that they're people, too. So we want them to respect us and to communicate clearly with us, show us kindness and use good body language, but we also that they're people, too. I always say show kindness to each person you meet because each person you meet is fighting some kind of battle you know nothing about. 

It's certainly true about all of the families that come in to Nationwide Children's but it's also true for doctors and nurses. They have a lot of things going on too outside of the hospital. 

Dr. Mike Patrick: Yeah, and a lot of things in the hospital...

Carrie Holt: Right. Protecting their job. 

Dr. Mike Patrick: Yeah, yeah. Absolutely. 

As you think about the communications that you've had with your son's healthcare providers, what have you seen that's worked and what maybe doesn't work so well?

0:44:02

Carrie Holt: Some of the things that have worked is that big part that Dr. Noritz talked about is that listening. I think listening that the doctors are listening and taking time, but also that families are listening. That we're not on our phones that were actively engaged and hearing what they have to say. So I think that's listening on both sides. 

Also, just again that trust that you may be an expert as the doctor, an expert in this area, but I'm an expert on my child. So understanding and taking my word for it, that even though my child might have the exact same diagnosis as the patient in the next room, that they're very unique and they're reacting to this in a very odd way. Or he might be that one percent that's out of... He's not supposed to be in 99% but my child is on the 1% of this side effect that's happening or whatever it might be. 

And so, taking the family's word for it that "You know, I can't really put my finger on it but something's wrong. Can you help me explore that?" And I feel like when the doctor takes it into account and says, "Okay, let's try A, B, and C. Let's troubleshoot this together and have these conversations." I think that that's really good communication.

0:45:15

Dr. Mike Patrick: Yeah, absolutely. Had there been instances where you would say, I mean, if you had advice for providers, like "This does not work." Do you have any of those kind of things that we should be avoiding? 

Carrie Holt: Well, I think probably one of the things again is just not treating the whole person when you're maybe only looking at your specialty area and that your decision isn't going to affect all these other areas. Or "If you make this decision, they might have this happen in other areas of their health," I think that doesn't work. 

I think when you just look at test numbers and statistics. Dr. Noritz and I went through this a couple of years ago together with Toby where it was like the by-the-book treatment was this. 

0:46:02

But when you look at the patient, he wasn't necessarily reacting that way. He looked better than he was and the family had this going on outside of the hospital. And so, we needed to make a decision to be able to just let him go home. Even though it may not been exactly hospital protocol, but he was willing to work with us. 

And some of that comes through that trust being built that the doctors know that we can take care of our kids, too. And if we can't, we're going to find the help that we need. 

Dr. Mike Patrick: Absolutely. I want to change our focus a little bit on the patients themselves. And Marilyn, you started to talk about this when you're just trying to get an idea of if the kid understands and if they have other questions about it. And with a lot of kids, if you'll just point out, asked them that, you're going to get a no. The one where the answer is. 

But in the course of playing with them, you're really able to get more. Talk a little bit about how the developmental level of children. What's appropriate to share and how do we know that they're understanding and all their questions are getting answered?

0:47:12

Marilyn Friedman: So children all develop at a different level and a different time. But even as early as infancy, I've had the opportunity to observe my grandchildren's pediatrician who when he examines their ear, he'll say, "Okay, let's turn your head to the left. And let's turn your head to the right." And he'll look in their ears and I think children begin to understand things at a different level. 

Having said that, every child develops at a different rate, at different times. So that may be seen as unusual example, but children as they approach toddlerhood, if you say "Do you want the red cup or do you want the blue cup?" they can point. They may not be able to say it but you've given them the tools and the language to say "I want the red cup" or whatever the situation is. 

0:48:19

And then, you move in to older children. And then, you begin to realize that you can either give them a lot of information or you can't give them a lot of information and you give them only what they can understand at that time. 

So, for example, a child comes to the emergency room. They have to have some labs done, and you can describe to the child, "Okay, this is going to be what happens but, first of all, you need to talk to the parents." Because the parent can tell you, my child, have they had this procedure before? Have they not had this procedure before? And how do you think they're going to do? 

0:49:13

And you can take that information and show the child specifically either through medical play by providing a doll that you can work through the medical procedure. As I said, if it's a lab draw, you can show them the blue tourniquet and show them how it's going to go around your arm, "It's like a stretchy rubber band. It's going to feel tight, but it's to help the blood flow down into your arms so that they can take a better look and see." 

And then give them sequences, "It's going to be cold and your job is to be still as you can." And I'm going to help you with this situation, by either distracting them with the iPad or a light wheel or whatever it is your tools are to help them manage that situation. 

0:50:06

And the goal is to educate and prepare and then to also, if they ever find themselves in a situation again where they have to have labs, then they can say, "Aha! This is how I did it."

And clearly, as the child gets older, you give them a lot more explanation and you tell them exactly how this is going to occur. But if you find that they cannot take it, all of a sudden they reached a wall, again, that deer-in-headlight look, you go back and you can start again and say "This is how we're going to do this." And again, it's just a matter of looking at how that child is going to cope with the situation.

And one of the big goals is to build trust with that child because by building trust with the child, I'm going to build trust with that parent. And that parent's just going to trust me when I come in to the room and I say, "I head this is what's going to happen. How do you feel about that?" Or prepare them or ask the parent, "What do you think your child wants to know?" and go from there.

0:51:21

Then, clearly, as they get into adolescence, their coping styles, if they're growing at a typical rate, they're coping styles are going to be different. But sometimes, they regress and go back to acting much more toddleresque and how do you manage that situation? And again, you could even use medical play and kind of go through that again. 

With a child with complex medical needs like Toby or any child that we meet, trying to provide that gentle touch.

Dr. Mike Patrick: Like you said, really developing understanding with each other and trust and comfort. And then, they are more likely to let you know when they have questions, if once you established that. 

0:52:16

Marilyn Friedman: And the good thing is right now, we have child life specialists in many areas in the hospital, including radiology or in areas where if I know a child is going down for a procedure, we can call down to our team down in radiology and say so and so is coming.

Beyond the lookout, I can give them basic developmental and coping skills that have worked in the past. I think that, again, it's looking at that child, being there for them, understanding their thought process and trying to help them learn to process that information. So that if they should have to have this procedure again or any other procedure, that they have the knowledge and I'll use medical knowledge in their own understanding how to cope with the situation.

0:53:22

Dr. Mike Patrick: Dr. Noritz, when you're dealing with families, there's that communication that takes place between you and the parent, but it's also important that you're communicating with the child too. Do you have any tips and strategies for accomplishing that, especially when things are really complex?

Dr. Garey Noritz: I always talk to the child first. Even if the child's non-verbal, even if the child's an infant, even if the child has a tracheotomy. Because that's the patient, but the patient or the family but the child is the center of sort of that circle. And to the extent that I can relate to the child, and even if they don't speak, they may understand what I'm saying. 

0:54:12

I always just want to continue to treat them respectfully and explain to them what's going on. And I can always find something to complement them on whether it's their new haircut or their T-shirt or something else, because those are the instinct things that the families come in with. 

But I've heard it from, especially the parents and the adults that I take care of, how much it means to them that I speak to their child. If they were maybe an adult, but I speak to them first because it's their visit.

Dr. Mike Patrick: And I love then at the end of it you ask "Do you have any questions?" to the kids because they come up with all kinds of crazy questions, like "What color popsicle are you going to give me?"

Dr. Garey Noritz: Right.

[Laughter]

Dr. Mike Patrick: There's a lot. Well, they always have a question. Well, they don't always, but they're not questions you expect them to have.

0:55:04

Dr. Garey Noritz: But they're the ones I want to hear. 

Dr. Mike Patrick: Yes, yes, yes. Carrie, as you've heard this, and think about Toby, the way in which providers communicate with him really does need to change overtime, right? 

Carrie Holt: It has for him. And I was thinking a lot too about non-verbal patients. And Dr. Noritz expressed that, just that respect and talking directly to the person. I've always appreciated that about our providers when they do talk to him directly and they treat him as a person.

In the very beginning, especially when he was younger and he couldn't speak. He still has a trach even at 12 but he couldn't talk or communicate until he was almost three. 

I was the main advocate. So I'm the one processing the information. I'm the one explaining it or the child life specialist or things like that later to him at home. And over time, he has become more involved in his care. He's been able to. So we're trying to have him not just be on his iPad. Because there are times he wants to check out his appointment, because he's here so much. 

0:56:11

Dr. Mike Patrick: Yes, absolutely.

Carrie Holt: But also encouraging to... Preparation ahead of time, "We're going to see this doctor today? What are some questions you have? This is what we're going to see them for?" What are some questions do you think you might have about this? Remember you've had this pain or this thing going on, what would you want to ask them?"

And the other piece that I have really appreciated is just when doctors don't talk over the patient or they don't talk over Toby. There have been times when I have providers say, "You know what, Toby we're going to go on the other room for a little bit" because we need to discuss something that was highly sensitive and not be talking about him in front of him. And so, we've gone into another room and have this discussion. So we could be a little bit more open symptoms or courses of treatment that may give him anxiety if we're talking about it in front of him. 

And I think it's even important for your non-verbal patients too. They can read body language and things like that. Or if they're an adult, you know then it's a three-way conversation or more patient-to-adult provider if they're verbal. So I think those things are really important. 

0:57:14

And as I've seen Toby grow and develop that he also gets some pride over taking ownership of his care, going over his med list with the nurse, knowing his medical record number which he does have memorized, things like that. Answering those questions, the questions you get when you check in at the counter because ultimately, we would love for him to be independent. 

I don't know if that's possible yet, but the more empowerment I can give him, the more tools I can give him to be an advocate for himself and communicate well with his providers, then there's winning on all sides. 

Dr. Mike Patrick: Something that you may not want to think about, but as Toby gets older and there are a lot of kids who are in like the complex care clinic now, as they get older and transition to adult physicians. But I feel like maybe you guys are hanging on to him a little longer, right? Yes, no? 

0:58:12

Dr. Garey Noritz: Yes and no. It's a delicate balance. It depends a lot on what other specialists they need and what other kind of services they need. Me and some of my partners are trained in both internal medicine and pediatrics and so we are comfortable taking care of adults of any age. And even real adult kind of problems, coronary disease, prostate problems, things like that, we don't do so much of that around the Children's Hospital. 

But it does become an issue when you need... I have a patient who's an adult who needs a colonoscopy. And he needs to be admitted to a hospital to get his bowel cleaned out in order to get his colonoscopy. And he's really too old to come get that at our hospital and he's really struggling at the other hospital. I would say he and his family and his physicians are struggling at the other hospital to find a way to get him to be able to tolerate doing those procedures.

0:59:17

Dr. Mike Patrick: So again, really looking at the whole family and like what challenges and how can we provide the support to make happens what needs to happen, still a very big part of it. 

For families out there who are thinking about that transition sort of pediatric care and adult care, we've done some podcasts  in the past that you may be interested in. One was actually a CME episode for providers called "Transitioning Pediatric Patients to Adult Healthcare". That was PediaCast CME, Episode 25. 

Dr. Patience White with the Center for Healthcare Transition Improvement at George Washington University was guest. So that's a great one for the providers in the crowd. 

And then, we also had one, "Transitioning Your Teenager to Young Adulthood. That was Episode 402. I think it will be very helpful for parents out there, as you're just thinking about that transition, whether it's your child's facing a complex medical condition or not. You may be interested in those.

1:00:12

I'll put links to those episodes in the show notes for this one 442 over at pediacast.org.

Dr. Garey Noritz: Mike, can I just say that the most important thing on that note is that a child will not learn to become independent if they're expected to become independent. And you know Carrie and I think other families like hers who really get their child working on these things and learning to start taking ownership. You can't do it all at once. But you can start young memorizing your medical record card number just like your phone number. Starting to understand your medication list and why you take the medicines. 

Dr. Mike Patrick: So stepwise...

Dr. Garey Noritz: Yeah. And so families where they sort of never put any expectations on the child become independent, those children don't become independent. 

1:01:03

Marilyn Friedman: And I also think that sometimes families don't recognize the fact that their child is capable of learning some of that information at an early age. I've often observed families who -- I'm in the cystic fibrosis clinic -- who the parents will often answer and give the med list when the child is quite capable of knowing what medications they're taking. 

Clearly, the ultimate goal of all parents is to try to teach that child to become independent. They're not going to be living with you. In Toby's case, hopefully, he'll be in some sort of independent living at some point that they learn how to manage their lives. And I think sometimes parents, it's difficult in a healthcare situation because they feel if they don't speak up, who's going to speak up for them, their child?

But in this situation, transitioning is very important because they're not going to stay little anymore forever. They're going to grow up in front of our eyes and our goal is to help them make that jump into the next stage of development. 

1:02:25

Dr. Mike Patrick: Yeah, absolutely. That's not an easy thing. It's not an easy thing when there's not a complex medical condition. And then you add that on top of it, and it makes it even more challenging for sure. 

Carrie, as we conclude, what advice do you have for families who are facing complex medical conditions and difficult decisions? What have you learned? What are some take-homes from this whole experience you've had? 

Carrie Holt: So there are several, but probably the first and foremost is just surrounding yourself with support, whether that's in a medical community or being able to find other families who are in a similar situations. Having that support, and maybe it's your family or neighbors or friends or different communities but try not to walk this journey alone because you shouldn't have to. 

1:03:17

And the more support that you can pull around yourself, the more... There's that real thing about caregiver burnout. And so, when you have that, you can't make a decision, you can't be a good advocate for your child. So I think it's really important. 

And ask for help, ask when the social worker comes or the child life specialist comes in. Don't be so independent, but reach out and ask for the things. And if they don't know, hopefully, they can find out for you and they usually are willing to do that.  

Another thing is just to make sure that your goals align with those of your provider and that you are on the same page, that you are having that respectful open communication because it does work both ways. And as time goes on too, it's also letting go of guilt because there are times when you have to juggle your patient, your child being just a kid first or a teenager first.

1:04:13

And we just pulled out of a speech therapy that we've been going to. And he's been in speech therapy almost since birth. I feel extremely guilty about letting go of this appointment, but it was just getting to be too much for a family. And so, there's  that level of just trying to balance, that you're balancing your own personal needs so you can be the best advocate for your child, that you're balancing the needs of your family.

Dr. Mike Patrick: Absolutely. And from a provider standpoint, I think you've said that listening, right? 

Carrie Holt: Yes. 

Dr. Mike Patrick: I mean really listening and understanding what a family is going through so that then when you do pull out of speech therapy, the provider has some understanding that it was too much. And so, because it's easy for the provider's standpoint to say, "No, your child needs speech therapy. Why?" And then, you start to feel judged. But just really, when we have empathy for each other and what our families are going through, that's a big thing, right?

1:05:15

Carrie Holt: And I'm not advocating for pulling out the speech therapy. He has a core for that in a different area through tutoring, just the level.

Dr. Mike Patrick: You don't have to explain.

Carrie Holt: But just that there are times when you do have  to learn how to balance and just let them go outside. And you do feel there's a lot of mom guilt, parent guilt, about "We're not doing all these therapy exercises at home. And they're not reaching that next developmental milestone." And there are some of that you just have to let go. 

Dr. Mike Patrick: I think that's huge. That's really, really important point. 

All right, we could go on talking for another hour, I think, on this. We're going to have lots of links in the show notes for folks. Number one, if you are interested in the Family as Faculty Program, maybe you are a parent with the challenge of a complex medical condition in the home and you'd like to be a part of that group, we'll have a link for you in the show notes.

1:06:06

Maybe you are listening right on Oregon, and there is not a Family as Faculty Program at your institution. You're more than welcome to take a look at our program and reach out if you have an interest in starting a similar program in your area of the country. So we'll have that link in the show notes.

And then, for those interested in our Child Life Program, we'll have a link to that in the show notes as well. Again, for Episode 442 over at pediacast.org. Also links regarding transitioning from pediatric care to adult care. 

So, I just want to thank our guests again, Dr. Garey Noritz, Chief of Complex Healthcare here at Nationwide Children's Hospital, Maryland Friedman, child life specialist and, of course, Carrie Holt with Family as Faculty and mom of Toby. Thank so much to all of you for stopping by today.

Carrie Holt: Thank you.

Marilyn Friedman: Thank you.

Dr. Garey Noritz: Thanks, Mike.

[Music]

1:07:25

Dr. Mike Patrick: We are back with just enough time to say thanks once again to all of you  for taking time out of your day and making PediaCast a part of it. Really do appreciate that. 

Also, thanks to our wonderful guests -- Dr. Garey Noritz, Chief of Complex Healthcare at Nationwide Children's Hospital, Maryland Friedman, child life specialist here at our institution, and Carrie Holt, parent and a part of the Family as Faculty Program at Nationwide Children's Hospital.

Don't forget, you can find us in all sorts of places. We are in the Apple podcast app, iTunes, Google Play, iHeart Radio, Spotify, SoundCloud and most mobile podcast apps for iOS and Android.

We're also a proud member of the Parents On Demand Network, which you can find at parentsondemand.com. Lots of great podcasts for moms and dads are part of that network.

And then, don't forget about our landing site over at pediacast.org. You'll find our entire archive of past programs, all of show notes, transcripts, Terms of Use Agreement, and that contact page if you would like to suggest a topic for a future program.

1:08:25

Reviews are very helpful wherever you listen to PediaCast. We always appreciate when you take a moment to share your thoughts about our show. 

And, of course, we love connecting with you on social media, you'll find PediaCast on Facebook, Twitter, LinkedIn, and Instagram. Simply search for PediaCast.

Also, if you don't mind sharing the show with others, not just online, but also face to face, please do let your family members, friends, neighbors, co-workers, babysitters, anyone who has kids or takes care of children. Please let them know about the program. 

And that includes your child's pediatric healthcare provide. Please let them know so they can share the show with their other patients and families. 

1:09:06

And while you have their ear, please let them know we have a program for them, too. It's called PediaCast CME. That stands for Continuing Medical Education. It is similar to this program. We turn the science up a couple notches and offer free Category I CME Credit for those who listen. 

Shows and details are available at the landing site for that program, pediacastcme.org. That's also available wherever podcasts are found.

Thanks again for stopping by. And until next time, this is Dr. Mike saying stay safe, stay healthy, and stay involved with your kids. So long, everybody.

[Music]

Announcer 1: This program is a production of Nationwide Children's. Thanks for listening. We'll see you next time on PediaCast.
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