EPISODE 235

[INTRODUCTION]

[00:00:01] MD: Okay. This episode I kind of feel like has to have a trigger warning in advance because we're talking about pediatric oncology, palliative care, and hospice care. And all three of those words can be very emotional and hard to process. But we have to go there. Because the patients that we are called to serve, they need us. 

After our little warning to guard your heart and be ready, trust me, we fill this with joy and a boatload of laughter. But I have to give a gratitude moment because we've been focusing on this all year long. And my gratitude for today goes to this First Bite podcast review. It's called Amazing and Heartfelt. It's from Stephanie Michele Sweigart. And if you haven't seen her, she actually has this bodacious, amazing YouTube channel. Go check her out on her YouTube channel. 

But she shared, "These podcasts are so inspiring I love the work that Michelle is doing. And her episodes can make you laugh, cry and learn all at once." I mean, that's what we're doing today. So perfectly timed. 

Thank you for your kind words. Thank you for your kind review on the podcast. Go check out her amazing work on YouTube. And, y'all, hold tight because Kristin is about to educate and inspire us all. 

And remember, if you have any funny money at the end of this episode, there's a really, really amazing fundraiser for Saint Jude's to help patients. So send your funny money and your love money that way. Thanks. Bye, y'all. 

[00:02:01] MD: Hi, folks, and welcome to First Bite: Fed, Fun and Functional. A Speech Therapy podcast sponsored by speechtherapypd.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP CLC, the All-Things PFDs SLP. I am a colleague in the trenches of home health and early intervention right there with you. I run my own private practice, Hartwood Speech Therapy, here in Colu Town, South Carolina. And I guest lecture nationwide on best practices for early intervention for the medically complex graduates. First BiteÕs mission is short and sweet; to bring light, hope, knowledge and joy to the pediatric clinician, parent, or advocate.

[00:02:49] EF: By way of a nerdy conversation, so there's plenty of laughter, too.

[00:02:52] MD: In this podcast, we cover everything from AAC to breastfeeding.

[00:02:57] EF: Ethics on how to run a private practice.

[00:03:00] MD: Pediatric dysphagia to clinical supervision.

[00:03:03] EF: And all other topics in the role of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[00:03:12] MD: To break down the communication barriers, so that we can access the knowledge of their fields.

[00:03:18] EF: Or, as a close friend says, ÒTo build the bridge.Ó

[00:03:21] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy and passion for continuing to grow and advance care for our little ones.

[00:03:32] EF: Every fourth episode, I join. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care and non-profit pediatric outpatient settings.

[00:03:53] MD: Sit back, relax, and watch out for all hearth growth and enjoy this geeky gig brought to you by speechtherapypd.com.

[INTERVIEW]

[00:04:09] MD: All right, everybody. We are closing out Pediatric Feeding Disorder Awareness Month with our hearts. And this is Ð and I'm trying not to cry. This is a topic that I feel we as a profession don't want to talk about or don't feel comfortable talking about because it's scary. It's the unknown. It's uncomfortable. We're talking about pediatric cancer and palliative care. 

And that's a hard conversation to be held. But the patience that we serve, they deserve us to grow in our skill set, grow in our empathy and grow in our compassion so that we can provide services from the heart and Empower their caregivers while they walk through one hell of a valley.

So we are here today to build everybody up. And I am honored by today's guest. Dr. Memorie Gosa recommended her. And I'm sorry. But if Dr. Gosa recommends you, that is one heck of a mentorship, sponsorship, endorsement right there. Dr. Gosa, if you're listening, thank you. 

But we have Kristin Szymanek, Manek? Did I do it? 

[00:05:26] KS: Yeah, Szymanek. Yeah.

[00:05:28] MD: Szymanek. Kristin Szymanek is our guest. And, y'all, she is the Director of the Rehab Department at St. Jude's. And did I get that right? Yes. 

[00:05:38] KS: You did. Yeah. 

[00:05:40] MD: I cannot imagine your Monday through Friday. I feel like that trickles over into like a Sunday to Sunday. 

[00:05:45] KS: Mm-hmm. 

[00:05:47] MD: Aha. But thank you. Thank you so much for coming on and for sharing this conversation with us. 

[00:05:56] KS: Yeah, absolutely. When you all had reached out, I was so excited. I'm a listener. And so, I was really pleased that y'all thought maybe I had something that I could contribute to this great thing you've got going. And so, of course, as you said, anytime Dr. Gosa recommends something, I'm like Googling it, saving it, whatever. The fact that she threw my name out there, I was like, "I have made it. This is the peak of my career." I'm just happy to chat with you all today. 

[00:06:26] MD: Yes. Amazing. And, y'all, we also have none other than our Erin. Oh, my God. Erin, my face froze right as I try to pass it over to you. 

[00:06:33] EF: I know. It's okay. Your camera's been really off.

[00:06:36] MD: Well, I mean, I'm cheap. The laptop flew out the front seat. I did not run the red light. It was orange. So I stopped. But yes. Y'all just now get to look at me mid-giggle for the remainder of today's time. But Erin, you're over in Cincy. And I feel like because of your work on the feeding team there, you're going to Ð this is going to come up. 

[00:06:58] EF: Well. And this is a Ð like it's weird that we're talking about this topic today. I mean, Michelle knows that Ð well, Michelle and I treat a lot of patients that are on palliative care, which we'll talk more about today what that actually means. Because I know that Kristin talks a lot on her social media and puts a lot of great information out there about what that actually is and some of the misunderstandings that I think people have especially in regards to pediatrics. 

But my favorite human in the whole world, my nana, had AML. And she was on comfort care and I took care of her while she was sick. And there were a lot of decisions that had to be made in regards to what that looked like for her and what quality of life was like for her. And today is a hard day because my grandma was put on comfort care and she passed away today. And there were a lot of decisions in that in regards to what she wanted and what quality was for her. 

And so, like Michelle said, having the conversation, you have to really shift your perspective in regards to how you look at a family and how you look at a child when they're going through something like this. Because you have to throw some things out the window and really look at them as a whole and what happiness and quality looks like to them. 

But, Kristin, while we get emotional and all of that, tell us a little bit about yourself. What led you to be an SLP? What led you to where you are today at St. Jude's, which is amazing? 

[00:08:40] KS: Yeah. I actually thought I was going to be a teacher. I got all the way up to the semester before student teaching and really panicked and said, "This isn't what I want to do." And my parents who were supporting me through college had said, "You need to figure it out. But I had had some family members who had had some pretty significant medical complications at birth. And I had seen what rehabilitation services had done for them. And so, I was very inspired. 

My cousin, in particular, who really showed me that teaching can take many forms. And being a classroom teacher is absolutely valuable, and so needed and wonderful. But that wasn't the only opportunity I would have to teach and to work with children. 

And so, that's when I had had some friends in college say, "I really think you should look in the speech pathology." And the stars kind of aligned of like, "Oh, I actually do know a little bit about this with my family experience." And so, that led me to speech therapy. 

Finished my degrees. I did both my undergraduate and graduate work at the University of Illinois and then sought out Ð one of my last clinical rotations was at St. Jude. I was very interested in the hospital. I had been fundraising for them through various organizations in college and knew they had a rehabilitation services department. 

Ended up doing a clinical rotation there in graduate school. And then stuck around in Memphis, honestly, with the hope of being able to come back at some point and continue to serve the patients and the families here. And so fortunate that that's something that worked in my favor. 

I do have some experience in the schools. I've worked in an outpatient hospital. I've done some PRN work and a sniff. Really nailed it home there for me that adults maybe aren't my bread and butter. Yeah. You can't bribe them like you can bribe kids, right? Bribe is a terrible word, right? But convincing adults to do things is a little bit more difficult. 

I've been at St. Jude now for I think almost nine years. And it's been a fabulous journey. It's a wonderful place. A lot of people will say, "Gosh. It's got to be so sad to work there." And I want people to know, it's really not. It's one of the happiest places. I think people think children's hospitals are just devastating. And they can be. But they're also really, really joyful. And particularly in the rehab department where there's no ouchies. There's no pokes. Things don't generally hurt. They're coming to play and to experience you know all of these child activities that they want to participate in. I feel very fortunate to be in the role that I'm in. 

[00:11:34] ED: I just envisioned a department that's just like IPP strong and you've got like big interactive gyms. And it's just like everybody smiling and having fun. And I'm sure it's not always like that. But the way you describe that, I'm like I could see a little one walking down the hall and just being ready to go to town playing. Yes. 

[00:11:55] KS: Yeah. It's one of those places where you can see that everybody has the same mission. And that's evident in how they approach patient care and how they interact with one another. It's really, really cool to know that like you're truly all in the same boat and you're all trying to have the same direction. It's a very, very supportive environment. And I know that that's not the case for everybody. And so, I don't take that lightly. I feel very fortunate. 

[00:12:26] MD: Okay. Now I'm just being nosy. What grade did you want to teach when you wanted to be a teacher? 

[00:12:32] KS: I thought I was going to teach the little. So kindergarten, first grade. I didn't go to special education route, which probably would have better suited me. But, yeah, I thought I was going to do the little kiddos. That was not Ð 

[00:12:49] KS: I certainly wouldn't have survived the pandemic. A lot of teachers Ð I thought I wanted to be a nurse. But I hate blood. 

[00:12:58] KS: Yeah. Right. 

[00:12:59] EF: Or a medical anthropologist. That's actually what I started college studying was anthropology. And I wanted to like go to countries and do medical care. And it's a lot harder than they make it seem. 

[00:13:11] KS: I mean, my other option was landscape architecture. I mean, we are just full spectrum of ideas over here. 

[00:13:20] MD: Coming hot with law school. Because I love Ð 

[00:13:22] EF: Well, yeah, I thought about that too. I like to argue. Michelle, you really like to argue. 

[00:13:26] MD: I love to argue especially with Ð like not meanly. But like Ð 

[00:13:30] EF: Advocate. Advocate. 

[00:13:31] MD: Advocate. We have issues at the state level. And you need somebody who's willing to like take time off from work and go advocate and volunteer to get policy changed, and law changed, and licenser changed [inaudible 00:13:42]. 

[00:13:43] EF: So now you're being a free lawyer is what you Ð 

[00:13:45] MD: [inaudible 00:13:45]. 

[00:13:52] KS: [inaudible 00:13:52]. Okay? It's called multi-passionate. 

[00:13:56] EF: Yes. Yes. 

[00:13:58] KS: We solve many problems. 

[00:14:00] EF: Yeah. 

[00:14:00] MD: Okay. We have a lot of ground to cover today. But can you kind of talk to us about pediatric oncology is something that I'm honestly not very familiar with. I have had friends that have little ones that have survived leukemia. And I've picked up patients after they've been discharged from the hospital. Down Syndrome, dual diagnosis of leukemia, which I know is increased prevalence. 

But I have never been impatient to work with this. Nor do I Ð I know that is not my place in this world nor do I want that to be my place in this world. So thank you very, very much for the work that you do. But make me better. Talk to us about what that looks like. 

[00:14:43] KS: Yeah. I think the important things that I love for people to understand about pediatric oncology is that as a speech therapist working in this setting, yes, it's a niche setting. But I am doing the same things that other people are doing in their respective settings, right? 

I am a speech-language pathologist first. Dysarthria is dysarthria is dysarthria. I think sometimes people put this job that I have on a pedestal. And I just want other people to know that anybody can do this, right? It's applying the knowledge that we have about our expertise to a specific population, to a setting, with all of the information that we have about pediatric oncology. 

I do just love to say that so that people can feel encouraged when they're trying to get into kind of these like small pockets of the field. It's very doable if you work hard, and you think critically, and you are willing to be proven wrong and if you're willing to collaborate with other people. 

Childhood cancer in the United States is the leading cause of death by disease. There are about 15,000 new cancer diagnoses every year. And one in five children won't survive that cancer. And so, that leaves us with about 80%, 85% percent serving their cancer at least five years, which those statistics aren't great. But they were much worse years ago. We don't get a ton of government funding for pediatric oncology. We're doing a lot with very little. But there's been some really great strides in treatment over the years. And we've pushed survival rates. 

Leukemia, for example, is the most common childhood cancer. And it's survival rate in the 60s was like 20% or 30%. And now it's over 85%, right? 90%, I believe. And so, we're doing Ð we're making moves in terms of increasing survival rates improving those survival rates. 

And what I think is really important from the speech pathology perspective is that means that these patients are surviving longer and they're probably experiencing deficits or having health concerns that are impacting their lives. And so, then the speech-language pathologists and the rehabilitation team is really critical in making sure that we're picking those kids up and kind of holding them in our hands and saying, "Okay, you've survived. And now I'm going to help you thrive." Right? 

I think of my goal is how can I help this child and this family just really excel in their current piece of their journey? Whether that's on active cancer treatment or afterwards. And so, I tell people all of the time, "You may not work in childhood cancer like I do. But the likelihood that at some point in your career someone is going to land on your caseload that has a history of childhood cancer is high." And we want that to happen, right? We want these kids to be surviving long enough so that lots of people are seeing these patients. Those are just some of the little tidbits that I like to kind of throw out about why I feel this work is really important. 

[00:18:03] EF: Parental zone of discretion. Did we get it right? 

[00:18:06] KS: Oh, the zone of Ð yeah. Mm-hmm. The zone of parental of discretion. I think it is. I truly think that's like kind of where it came from. I don't know the whole history of how it was developed. But, essentially, the zone of parental discretion gives rights to the parents to make the best decision for their child based on the information that they have. Even if another group like the medical team doesn't feel that that's the optimal choice for the child, we still respect the right that we educated that family.

And I think the really important part is making sure that the education was there and there was an opportunity for questions, or return demonstration, or whatever. So we've got the facts all laid out there. And then the family can make this decision. And regardless of if anybody else thinks that's the best, or the right, or the optimal decision, we respect the parents in making that decision for them, for their family. 

I definitely try to consider that when working with these patients and families. Because you know what I think I would do doesn't mean that that's the right thing for somebody else.

[00:19:21] MD: Okay. When we're doing early intervention, the whole thought process is that we're supposed to be focused on caregiver goals for peds outcomes for their PFD outcomes. Because that's how IFSPs are set up. So can you talk to us about how caregiver goals, what that kind of looks like in your setting? 

[00:19:50] KS: I'm going to answer this a couple ways. I think there's a couple angles here. Inherent to this setting, counseling becomes a role that the therapists take on for these families pretty often. And it's not necessarily always related to the therapeutic type of information that they're receiving. We're talking about dysarthria. And it's not always counseling related to dysarthria, or dysphagia, or whatever the case may be. 

A lot of times they come in and they want to tell us some really hard stuff. Because I think they think it's a safe space and it's a little less medical than some of the other appointments that they're involved in. And I think my team does a fabulous job of building trust and really good rapport with the families. And so, they just unload sometimes. And so Ð 

[00:20:48] MD: Okay. What about the counseling piece? Because that Ð I mean, coming at this from the home health EI perspective, honestly, it feels like most of what it is that we end up doing is primarily counseling. Whether that'd be counseling the caregiver and like the primary caregiver. Or we're working on counseling and coaching like the early childhood special education teacher or the aunt or uncle that the little one is with. 

But also, making sure that our mental health is good and knowing how to encourage colleagues and future generations, I.E. our students, on the role of counseling even for ourselves. Can you kind of talk to us about Ð that's a lot of questions all in one. 

[00:21:45] KS: We do a lot of counseling ourselves. There is counseling available to patients and families through my institution. We have a fabulous psychology and social work department that will Ð if we can't serve them here or maybe it's an aunt that's having a difficult time back home and not somebody who's an active caregiver on campus, they will reach out to those people and try to help them with resources as well. 

And then, yes, there are opportunities for counseling for staff. We have a really great resilience program that is aimed at a whole host of things related to employee satisfaction, and retention and all those types of things. But there's also a program called Rise. And it's a peer responder program that I've been a part of previously where staff can call a phone number. Anonymously have a conversation with another staff member about a really difficult patient-related event. So that's one way that we can kind of connect people and support staff. But we can also plug people in with counseling and things like that as well. 

[00:23:02] MD: Okay. Feeding Matters has the resource for the peer-to-peer. You can find it right on their website. It's the Feeding Matters Peer-to-Peer Tool. And it is where one caregiver can call in and get encouraged by another caregiver and kind of what's going on. But that's not tailored specific for patients that have cancer. That's normally for children that are born with HIE post-stroke or if they have autism and are working through PFD and like the complexity is unique to our neurodivergent population. But do y'all have resources to help walk with our patients to be present with them in that setting? 

[00:23:50] KS: We have that as well. We have like parent mentors who can be plugged in with. Parents who have Ð or I should say caregivers who have kind of gone through the whole journey and maybe their child is surviving and doing well. Maybe their child has passed and we can connect them with on-treatment families who are looking for some support from somebody who knows. 

Because I think the hard thing is I have worked in this setting for almost a decade and I know a lot about pediatric oncology. But I've never been the parent to a child with cancer. I'm adjacent to it and I know a lot about it. But I don't really know.

[00:24:32] EF: Yeah. And I think your point, I love the thinking about I'd never had that model or definition to describe talking about what parents or caregivers are wanting for their child. But I think as a field sometimes Ð or as a medical community, I think there is a lot of judgment placed on parents' decisions and what they want for their child. 

And we talk so much about cultural competency. But you live in the house you grew up in. And so, a family is a culture. And we have to look at it that way too in regard to the decisions that they're making because we don't know what that household looks like. And that's their family. 

And so, I think of how many times, like I had a child that was aspirating and the caregiver still wanted to give them the liquids that they wanted to give them. Or they were making certain decisions about their medical care and it's like all these questions about like is this safe? Is this not safe? Are they allowed to make this decision? But at the end of the day Ð and I'm very passionate about the fact that I think once a child has a certain diagnosis or they're put under certain medical care, we take away so much control from parents. 

Once a child is diagnosed with dysphasia or once a child has a feeding tube, the caregiver canÕt even say, ÒOh, my childÕs vomiting. Let me stop this feed.Ó Because the medical provider is going to say theyÕre not getting enough. And now weÕre worried. And itÕs like how heartbreaking is that, that youÕre watching your child in pain and you donÕt feel like you have the control to say no. And they do. But I really love that point. 

[00:26:03] KS: I was just thinking too about how healthcare Ð and I only have the perspective of healthcare in the United States. But healthcare does this really funky thing where we try to control so much for these families. And like youÕre saying, Erin, take away that control. And then we get to these really big decisions and we go, ÒItÕs up to you. What do you want to do?Ó 

And then these parents were like, ÒWhoa, youÕve been telling me what to do for the past 10 steps. And now it's this really huge decision that's very scary. And I don't know what's going to happen. And I'm not the expert. And you're telling me it's up to me." And I think that can be really, really difficult. I think we have to walk with our patients a little bit more than we do sometimes. That's a whole other podcast. 

[00:26:50] MD: Okay. I know Erin and I talk about Feeding Matters a lot. We love, love, love, love, love, love, love, love them. But they have their website and we use that as a resource for people to go and find information. But what other tools do you have or do you recommend if a patient wants to know Ð or not necessarily the patient? But like they're caregivers or family members from a distance. Or, I mean, honorary aunts and uncles. Like Erin is an honorary aunt in our household if they want to learn more about what's going on with the child and how that's going to impact their journey, what tools do y'all have for them? 

[00:27:33] KS: I would also recommend Ð St. Jude powers a website called Together. It's www.together.stjude.org. It is a fabulous resource. It is written for parents. It's in I think 11 languages now. And it is meant to just be Ð we call it your home base for cancer, for childhood cancer. 

It has information about all these different diagnoses, treatments, and side effects. And what it's like to be an adolescent with cancer? Because that's very different from being an infant or a young child. And that's a really, really great resource as well. 

[00:28:14] MD: Okay. In the settings, we're in, and Erin is in different settings now. Like she's now part of a feeding clinic team. And honestly, just took over a new role where she's like bridging like inpatient to like outpatient for PEDs feeding at the hospital that she's at. But she's going to encounter. 

And Erin, correct me if I'm wrong here. She's going to encounter different interprofessional practice partners that are more likely to be present in the room. Like an OT or an RND. But in early intervention, our patients with PFD and dysphagia, they may not necessarily be present in the room. We might have to work a little harder. But our potential interprofessional practice partners could be a service coordinator, PEDs, OT, PT, maybe a teacher for the deaf or a teacher for the blind within home health kind of setting. 

But I just Ð and I know PFD in the public schools, they then take on the role of like school administrator being part of the IPP team. And the cafeteria workers being part of that IPP team. But in your setting, which interprofessional practice partners do y'all engage with the most in hypothetical patients? Your babies. My hypothetical. But in your babies like day-to-day coming and going? 

[00:29:34] KS: Everybody. Anybody that you can have in a medical setting plus some more people. Kind of from the top down, you're going to have an oncologist. You are probably going to have a radiation oncologist as well if they are going to go through radiation. There will likely be a neurologist. All of your nursing staff, your APPs, your NPs, your nurses, a psychologist, a social worker, PT, OT, SLP, audiology, ear nose and throat doctors, gastroenterologists, dietitians, and respiratory therapists. I'm sure I'm leaving people out. But if they work in a medical setting, they're probably involved in some way. It's a big army of people who can be involved in the care of kids with cancer. 

[00:30:28] MD: Okay. I have a question about the oncologist. Are there different types of oncologists? Like is there like Ð 

[00:30:34] KS: Mm-hmm. 

[00:30:36] MD: Okay. That was probably a dumb question. No questions Ð 

[00:30:39] KS: Not at all. There's going to be your primary oncologist who handles most of your care. You might have a radiation oncologist. So that would be somebody who helps plan your radiation treatments. You might have a neuro oncologist, which is going to be the person that steps in if there's Ð generally, that would be somebody like with a brain tumor would probably have a neuro-oncologist. I'm sure there's other oncologists out there that I'm not naming. But yeah, you could have multiple oncologists on your team. 

[00:31:11] EF: All right. As the SLP on the team, you're doing the gamut for these kids. Artic, language, dysphagia. Is there one that's more prevalent than the others? 

[00:31:24] KS: Yeah. It's definitely the situation where I'm using like the full scope of my license. Like anything can happen. I would say the things that we Ð or the areas that we work in the most are motor speech, dysphagia, cognition probably are the biggest, the biggest groups. A lot of apraxia, dysarthria, feeding and swallowing, memory, executive functioning. Those types of things. 

[00:31:50] EF: Is the dysarthria and the apraxia, is that like a baseline etiology? Or is that like a comorbidity with the treatments? 

[00:31:59] KS: Yeah. Any of Ð 

[00:32:01] EF: [inaudible 00:32:01]. Is that the word? 

[00:32:03] KS: Yeah. Any of the deficits that we are tasked with, kind of working through and working with these families on, could be a result of the cancer itself or could be a side effect from treatment. For example, if you have a child with a brain tumor, the actual tumor in the brain could be pressing on an area of the brain or causing hydrocephalus or swelling. That is resulting in things like facial weakness, dysarthria, what have you, dysphagia. 

On the other hand, the treatments that we use to combat the cancer can also be the things that cause these same deficits. The surgery to remove the tumor might be where the dysarthria or the dysphagia starts. Or the radiation and the chemotherapy that are used to combat the cancer could be the causes of the difficulties. 

A lot of times it's multiple things, right? The cancer and the treatment can cause. And sometimes it's like a chicken and the egg thing. We don't really know exactly where the issue is coming from. Yeah. Yeah. Cancer and its treatment can certainly cause these difficulties. 

[00:33:16] MD: Because I envision, in a typical hospital, like my local community hospital here, most of my patients, if I get them, theyÕre NICU grower feeder kids or they've been in and out because of traumatic event and non-accidental trauma, those kind of situations. So we're in for a shorter period of time and we're out. The handful of patients that I've worked with that were post-leukemia treatment here at the local hospital, they were in for several months at a time. And that requires two different skill sets as a clinician. Like you have to have like the ability to build long-term rapport versus short Ð I don't know. I don't know what the word is. You're either acute or you're like long-term. Do you see what I'm saying? 

[00:34:09] KS: Yeah. Yeah. St. Jude's a little unique in that most of these patients are coming to us from other parts of the country or other parts of the world. They kind of like uproot their lives and move here for their cancer treatment because we run so many clinical trials that other places may not have available. 

And so, these families are generally with us for a long time. In general, somebody who's going through treatment for a brain tumor like medulloblastoma is likely to have six weeks of radiation after their surgery followed by a short break. And then four to seven rounds of chemotherapy. And in total, that might be around a year that they're with us. 

Leukemia, on the other hand, those protocols are much longer. They're getting chemotherapy for sometimes two-plus years. And there might be times where they get to go back home or take some breaks and things like that. But they're lengthy treatments in childhood cancer. 

My hospital does its very best to keep as many kids outpatient as long as possible. The speech therapy team at St. Jude really works in an acute inpatient and outpatient setting. We kind of just like go wherever the kids are that day. But we try to keep them outpatient as much as possible just because we think it's better for them as tiny little humans to not be cooped up in a hospital all the time. And we've gotten pretty good at delivering treatment so that it makes it possible for them to kind of have more of an outpatient model. 

[00:35:45] EF: Well, and you have to think about, "Okay. This is Ð" you know, if they're getting treatment or there for a year, that's a huge part of their development. Not only are you tasked with how do we work on the deficits or differences that they may have as a result of their treatment or cancer. But this is also a child that at this period of time would be going through all this development. How do we help with that development component while we're working through things that are changing their body while we're trying to make their life as quality and normal as possible? Can you talk a little bit about like that palliative care perspective? What that is? And how you use that with the patients that you see? 

[00:36:42] KS: Yeah, absolutely. I love to talk about palliative care because I think it's one of those things that is really misunderstood. And people are very scared of it. But I think that's just because Ð and no one's fault. But this lack of knowledge about what palliative care actually is. 

When we think of the definition of palliative care, we're really talking about like the total active care of a patient. And it's for people who have a disease or a disorder that's not necessarily responsive to curative treatment. We're looking at children with life-limiting illnesses, chronic diseases, those types of things. 

The important thing to understand about palliative care is that it's not synonymous with hospice or end-of-life care. It is something that really should be implemented as early as diagnosis. It is a supportive type of care. And so, it really focuses on comfort and quality of life for these children with serious illnesses and should be provided at any stage of illness. You're never too early to provide palliative care. You're also never too late. 

If you didn't get the referral early on, that's okay. Whenever we can make that happen, we want to make sure that those palliative care services are going to be offered. 

Palliative care also looks beyond the medical issues that the patient might be experiencing. It really hones in on psychological, spiritual, social issues and things related to those kind of areas. Because it's all about how do we achieve the best possible quality of life for this patient? 

There are I think some misconceptions about who qualifies for palliative care. And I think one of the things that I really want people to think through and think about is you don't have to have a robust palliative care team or program in your setting to provide services that align with this palliative care model, right? 

At the end of the day, palliative care to me is just really, really good patient care. And I think that if we take the time to think through what really good care means for specific people, we're already providing palliative care. I think people are providing palliative care all the time. They just don't really recognize it. That's through a palliative care lens. And that's really, really great for that family. 

[00:39:18] MD: From a document perspective Ð because I can hear that Ð I know on my end in EI when I have palliative care and I have hospice patients. And there's formal documents. And like here in the state of South Carolina, it goes through hospice and it goes through Ð I'm sorry. Not hospice. It goes through our state early intervention system, BabyNet. And it goes through the Department of Disability and Special Needs Different. 

In home health for little ones, there's like different documentation and the state early intervention system will not pay for better or for worse. We got to hold that 14 episodes. If a patient moves from palliative to hospice, they will not pay for allied health services any longer. 

[00:40:03] KS: Oh, my gosh. 

[00:40:05] MD: I cannot freaking make up the amount of Ð now you know why I want to be a lawyer like on the side. So they only pay for palliative care. But we have Ð yes. We have to like maintain very strict documents, right, and like adhere to like these guidelines that, as the treating clinician, my hands are tied.

But normally, because I have had them on my caseload, when they transition from palliative to hospice, their private insurance or Medicaid pays for our services so we can do like quality of life. We can continue it. It's just the state early intervention system stops reimbursement and stops allied health at that moment where it does tip over into hospice care, right? Which, to me, warrants services all the way through, right? Like I don't think this should be a definitive line. But we're still trying to protect our scope of practice from unlicensed individuals giving feeding recommendations. So like we've got a lot to Ð there's a lot to work on. 

But like inpatient in a hospital perspective or when you're working with your community therapist, because it sounds like there's a lot of opportunity for them coming to your outpatient clinic. And as you mentioned that big emphasis on like we keep them out as long as we can until they're in. Is there a continuity of documentation to like help support these patients as they're in palliative care but maybe not in the hospital and they're in-home? Right? Does that make sense? 

[00:41:40] KS: It does. Yeah. St. Jude, we are so Ð it's just such a unique setting where it's all inherently palliative care. I think there's a really good recognition that we are palliative care providers whether or not we think of ourselves that way. We do have a very robust quality-of-life program that does fabulous work. And so, we have that support here. 

I think it's interesting to think what that looks like in other settings. Palliative care is Ð that programming is very well established in cancer in general including the adult population. Palliative care has not translated very well to other populations. And I think that's where you start to get some of these issues with state organizations and their programs saying, "No. We're not going to do that because we maybe don't see either the value or understand how it could be implemented in that setting." Maybe they think they don't have the resources or the time to train people. 

I imagine those are Ð and those are just general barriers to palliative care in places across the world. Right? Lack of knowledge. Lack of resources. Insufficient training. You know, fear. Policy.

[00:43:03] MD: The power of fear and the power of the Ð and that lovely sentence of, "Well, this is how we've always done it." I want nothing more to ban those words. I'm sorry. You guys couldn't see your face. But yeah. 

[00:43:18] EF: But Michelle, I think there's Ð I'm grateful that there's a lot more conversation is happening around this. And I'm grateful that, similarly, trauma-informed care is becoming something that a lot more people are talking about, which is great. I think there are a lot of people putting out a lot of information. That's really hard to kind of suss through and see Ð because like I said, I'm glad. But I think that, to your point, like training and really understanding what it is. 

I worked at the Rett Syndrome Clinic when I was in Greenville. And so, I had a lot of patients that I didn't know I was doing it to your point. But like that was the perspective that I came into working with those patients. Because when the seizures get really Ð seizures are getting worse and harder to manage. And we're having difficulties with our tube feedings. 

I mean, not even just that. But the second Ð like you said, the second we have this diagnosis, we know that development and their life isn't going to look like they thought it was going to look like. Now, how do we help them and this family grasp what is important to them and what they want for their child? And that Ñ I can't even imagine how difficult that is as a parent to say, "I had this picture. And now this picture is looking different." 

And part of our job in counseling and working with them is saying, "I'm going to help you paint a different picture. But the beauty of that is that you get to help paint it." And that is so scary for anyone. Because now I have to make a lot of choices and I have to look inward and understand myself and my family. And so that's a big task to ask any therapist. 

And I tell therapists all the time, I'm like, "When you get into a relationship-based therapy, and palliative care, and trauma-informed care, it is hard. It is so hard because you're having to give yourself and your emotions because you have to be a human." And I imagine that that's probably a hard boundary balance that you face every day with these families because you're with them for so long and during such a hard period of their life. But like you also have to be a human to work with them. That was long-winded, I don't know Ð but it is. It's like you have this picture and now you're having to take a paintbrush and like do it all over. 

[00:45:59] MD: Give me the heart of it, Kristin. Give me Ð Erin always teases me that I teach from my heart, right? But like that's how Ð that's how I engage with the world, is I want to know what this looks like and what is Ð what's a memory? Give us Ð on the surface, it's a clinical case study, right? I recognize it for what it is from an educational learning opportunity. But give me a story from your heart of like what this looks like when best practice is done. And then if you could give me like a barrier, a breakdown and how we could improve it. 

[00:46:39] KS: It's a big question Michelle. 

[00:46:42] MD: I know. I'm sorry. 

[00:46:44] KS: You didnÕt give me any warning Ñ 

[00:46:46] MD: And, y'all, just so you know, this is our third freaking attempt at a recording because everybody's internet crashed. 

[00:46:52] EF: And Michelle, your picture is frozen and it's kind of an RBF while you're asking that question. 

[00:46:58] MD: That's not my face. But yeah, it did. Because I was thinking. It's my thinking face. Oh, my God. Do I really look like that when I'm thinking? That is an unpleasant situation. Kristin. 

[00:47:07] KS: You do. But it shifts quickly. 

[00:47:09] MD: Yeah. Yes. Okay. There's your comedic relief for a segue for the world's heaviest question. 

[00:47:15] EF: Be back into the heavy stuff. 

[00:47:17] KS: Yeah, I mean, this is a tough setting. I don't know. I am an optimistic person by nature I think. And so, I really look at it as a privilege to walk alongside families in this journey. But man, it's hard. 

I think palliative care and childhood cancer, often, I will be working with families kind of in this risk-feeding realm, right? That's a big area that we're collaborating on. When these kids you know would like to continue eating and drinking by mouth and maybe our instrumentation is telling us otherwise in terms of safety, or efficiency, or whatever the case may be. And those can be really, really hard decisions because Ð so there's a paper by Claire Radford. She's out of Australia. It's about risk-feeding and pediatric palliative care. And it is fabulous. And I shot it from the rooftops all of the time. 

One of the things that they discuss in the paper is how we are meant to uphold these ethical principles. And that's really hard in pediatric palliative care. For example, we're not supposed to cause harm to a patient. It's unwise for us to recommend feeding or diet recommendations. That could potentially harm that patient, right? 

But we also aren't supposed to limit them. And we're supposed to promote quality of life. And maybe eating and drinking by mouth is really important to their quality of life even though we know it could be also harmful to their body systems. And how do we satisfy both of these principles at the same time in the same patient and do what's best for them? 

I think it's tough to know are we making the right decision? I think the important things to know are that you should never be making these decisions alone, right? You've got the patient, the family and the medical team who should be involved in these types of critical decisions. And nothing says that you can't pivot. Nothing says that you can't say we're going to move forward with this recommendation. We're all on board. We're educated. We understand what we're doing. And then we might get into it and be like this actually isn't serving the patient the way we thought it was going to. Or they're really struggling with X, Y, and Z. And we're going to pivot and go a completely different direction. That's okay. But it's just uncomfortable sometimes. 

Okay. I skirted the heaviness of the question. So we will get back to that. I will tell a story. 

I think one of the hardest conversations I've maybe ever had in my entire life was I had a patient with DIPG, which is diffuse intrinsic pontine glioma. It is an absolute dumpster fire of a cancer. It is the worst. I hate it. There is no cure. Most patients get diagnosed and within 18 months to two years, they pass away. And we are doing our best to figure out what the heck to do to change that. But in the meantime, we do our best to make sure that these kids are having really meaningful time while they're still with us. 

And so, I had a little girl who was starting to show signs of progression. She was getting very sick. We were trying to figure out what was safe for her to consume by mouth. If she even wanted to eat and drink anything. Starting to kind of prepare the family for what this could look like as she nears end of life. 

And she was an inpatient at the time. And the mom pulled me outside of the room and said, "I need you to tell me what this is going to look like for my kid. Like is she going to die because she chokes on food? Is she going to die because she drank the red Gatorade that she loves so much? Like what's going to happen? Tell me how she's going to die." And I was like, "Oh." 

Like the amount of Ð like I can't provide enough care and support to you in this moment just knowing all of the things that she's trying to think about, and plan for, and grapple with and understand. And that was that was one of the harder conversations I've had to have. 

Luckily, it's also not my role to completely own that conversation. I was able to talk about the benefits to risk feeding, and the risks, to kind of drill down into understanding a little bit better what she wanted for her child and what she thought her child wanted. But yeah, they can come with some really, really tough conversations for sure. 

[00:52:23] MD: Honey, your heart. Y'all, I didn't cry. I didn't cry. You didn't see her. But his woman's total love and adoration for what she does is just palpable. Oh, my goodness. 

[00:52:40] EF: Yeah. And, you know, I believe that kids are like Ð I believe that kids are who they are from the start to an extent, their soul. And it's through development and their experiences that we get to like figure out who that person is. We get to learn about who their soul is and who they are as a human. Because they may be little. But they're a tiny human. 

But I can't imagine as a parent like when you have an adult that's going through that. You know who they are as a full human. You tend to know what they want. Or deep down, you do. It may be really, really hard to figure that out. But deep down, you do. 

And I remember when we took my nana to Buffalo. For adults, they have a pretty Ð they were running some trials on AML and we took her. And she Ð it was the worst day of my life. I mean, she was hallucinating because of a medication that she was on. And she could barely walk. And we were taking her there to try and figure out what was the best option for her. 

And I had to talk to my whole family because they were like, "This is what we're going to do. We're going to take her an hour away once a month and we're going to try and whatever." And I called them and I was like, "We can't. We can't Ð this isn't her. We can't do this. Like this is not okay." And I was about to start my CF a month later. And she looked up at me and she was like, "What am I going to do without you?" 

I mean, she was my favorite human in the whole world. Like the best human. But I had to look and say, "As much as I wanted you Ð"

[00:54:38] KS: How about that? 

[00:54:39] EF: As much as I wanted you to be here, that wasn't what she Ð that wasn't her. And she had lived this great life. But to make that decision also for like a child. Or to figure out what they want, I can't even imagine. Because I knew my nana to her core like who she was. And I knew what she deserved. And to then Ð I just Ð and to have people like you that are like walking alongside them because it's not Ð we have to hold their hand and we have to like Ð and I sat there. And just Ð bless her. I didn't sleep for a month because she'd get up and try to walk herself to the bathroom and she didn't want to use her walker because she was pissed off about it. And I was like, "This is what you have to do." 

Cancer has a very Ð like I just Ð it sucks. But it's beautiful to have the support and have people like you that are very passionate about it. So thank you for sharing and doing what you do. 

[00:55:43] MD: I think, folks if you're listening, my humble suggestion is to go back to what Kristin said where she had her team around her and she didn't have to hold this conversation alone. And regardless of what setting you are in, you may be the individual with the knowledge and training on deglutition respiration, or you may be the individual with the knowledge on language skills. But you are one beautiful thread in this child's fabric of life and their team. And we cannot practice as silo clinicians in the space of palliative care. 

And I venture, hell, we can't practice as silo clinicians any which way you run it. But there it is. My twain came out. Oh, my gosh. I cannot Ð Virginia, I go home one weekend and the twain comes back. But there it is. But this is just it. You have a village around you of medical and allied health professionals to help set the little ones we serve for success. Yeah. 

[00:57:04] KS: Yeah. And if you feel like you don't, I think sometimes we have to also remember that how we're communicating with these other people kind of precedes the outcome that we're going to get from them, right? If I'm going to a medical team member and I'm saying they failed their swallow study, which, first of all, failing a swallow study makes me absolutely cringe. But that's the terminology we use all the time. And I say they failed it and they can't have anything by mouth. End of story. 

Well, they're not getting much from me. I shouldn't expect to get much from them. I think that conversation needs to be, "Hey, these are the things I'm seeing. And these are the reasons why I think I'm seeing it. And these are the recommendations that I have." But does that align with the other parts of this patient's care? Do you think that's something I can present to this family and get feedback on to see if that would actually work for them? 

I think a lot of the way we communicate can promote or prevent that productive collaboration. And if you really feel like you're in on an island, find me on Instagram. I feel like my DMs all the time of like this thing is happening and I don't know what to do. And I don't feel supported. And if I can support you from Memphis, Tennessee, I will. 

[00:58:26] MD: Okay. So then let's go there. If somebody has a worry and they want advice, how do they reach you? What is your Instagram handle? Can they email you? What would you like them to do? 

[00:58:38] KS: Michelle, I feel like you will love this, that we joke in my house. Do you know the Honky Tonk Badonkadonk song? 

[00:58:45] MD: Yes. Yes, I do. Because I'm old. 

[00:58:49] KS: We bopper in my house and we say, "Honky Tonk, badonk, badonk." Because my Instagram handle is PED.ONC.SLP. And we just call it badonk. And so, we sing that song a Lot in the house and dance the dog around. We are losers and need to Ð but that's what it is. PED.ONC.SLP. I can't give advice but I can you know provide support. So, happy to do so. 

[00:59:17] MD: So I would give a recommendation if you're listening too. Don't forget, there are additional parent mentorship groups available for free through the National Foundation of Swallowing Disorders. They meet once a month. And that's a fantastic group of other caregivers. There's normally an advanced skill set, BCSS clinician leading it. Normally, Donna Edwards. But that's another free virtual resource that you can provide to your patients. 

And then, Kristin, is there any organization that you would like? If somebody's got a little love money or a little mad money lying around at the end of the month that they could donate to, where would you like them to donate? 

[00:59:55] KS: Oh. I mean, of course, donating to St. Jude is near and dear to my heart. I am biased obviously. They cut fundingÉ But really, any pediatric oncology organization. There are some really fabulous groups out there, Pediatric Cancer Foundation, Alex's Lemonade Stand. There are all sorts of different things. There are DIPG foundations. Really, really anything that supports childhood cancer is meaningful to me for sure.

[01:00:26] MD: Excellent. Well, Kristin, I want to thank you with our whole hearts for your time today and for your expertise. Because this is lovely. Thank you. Thank you. Folks, if you're listening, go follow Kristin. Check us out on the First Bite podcast. I have a home inspection concluding in the background. I apologize for that. This is love. 

Erin, am I forgetting anything, hon? 

[01:00:51] EF: I don't think so. 

[01:00:55] MD: Kristin, thank you. And, y'all, thank you. It's a pleasure. Thank you.

[OUTRO]

[01:01:01] MD: Feeding Matters. Guide system-wide changes by uniting caregivers, professionals and community partners under the Pediatric Feeding Disorder Alliance. 

So, what is this alliance? The alliance is an open-access collaborative community focused on achieving strategic goals within three focus areas; education, advocacy and research. So, who is the Alliance? It's you. The Alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. 

To date, 187 professionals, caregivers and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together. 

That's a wrap, folks. Once again, thank you for listening to First Bite: Fed, Fun and Functional. I'm your humble but, yet, sassy host, Michelle Dawson, The All Things PFDÕs SLP. This podcast is part of a course offered for continuing education through speechtherapypd.com. Please check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. And as always, remember, feed your mind, feed your soul, be kind, and feed those babies. 

[01:02:41] MD: Hey. this is Michelle Dawson here. And I need to update my disclosure statements. My non-financial disclosures, I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders, NFOSD, Dysphagia Outreach Project, DOP. I am a former treasurer with the Council of State Association Presidents, CSAP. A past president of the South Carolina Speech-Language and Hearing Association, SCSHA. A current board of trustees member with the Communication Disorders Foundation of Virginia. And I am a current member of ASHA, ASHA SIG 13 SCSHA. The Speech-Language Hearing Association of Virginia, SHAV. A member of the National Black Speech-Language Hearing Association, NBSLA. And Dysphagia Research Society, DRS. 

Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 Convention in Boston. And I hope you make it out there. 

My financial disclosures include receiving compensation for First Bite podcast from speechtherapypd.com as well as from additional webinars and for webinars associated with understanding dysphagia, which is also a podcast with speechtherapypd.com. 

And I currently receive a salary from the University of South Carolina and my work as adjunct professor and student services coordinator. And I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders. As well as compensation for the CEUs associated with it friends speechtherapypd.com. 

Those are my current disclosure statements. Thanks, guys. 

The views and opinions expressed in today's podcast do not reflect the organizations associated with the speakers and are their views and opinions solely. 

[END]
FBP 235		Transcript

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