OTE 33                Transcript
EPISODE 33


[INTRODUCTION]


[00:00:00] ANNOUNCER: Do you enjoy listening to On The Ear, but wish you could earn ASHA CEUs for it? Start today. SpeechTherapyPD.com has over 175 hours of audio courses on-demand, with an average of 19 new audio courses released each month. Here's the best part, each episode earns you ASHA Continuing Ed Credits. Oh, no wait. This is the best part. As a listener of On The Ear, you can receive $20 off in annual subscription when you use code EAR21. Just head to SpeechTherapyPD.com to sign up and use code EAR21, E-A-R-2-1 for $20 off your annual subscription.


[00:00:48] DS: You're listening to On The Ear, an audiology podcast sponsored by SpeechTherapyPD.com. I'm your host, Dr. Dakota Sharp, Au.D, CCC-A, audiologist, clinical professor and lifelong learner.


While I primarily work with pediatric cochlear implants and hearing aids, I am absolutely intrigued by the many areas of audiology and communication in general. This podcast aims to explore the science of hearing, balance and communication with a variety of experts in hopes of equipping you to better serve your patients, colleagues, and students. Let's go! We are live and On the Ear, brought to you by SpeechTherapyPD.com.


All audiologists are familiar with counseling as it's a critical component for the success of our patients and their families. We often discuss challenging and difficult topics like a new diagnosis of hearing loss, a worsening severity for an adult or a child, signs of dementia, or the heartbreaking conversations of our pediatric patients who are sometimes facing things like bullying in school.


For our patients with more complex mental conditions though, these conversations can have many layers and may involve many other professionals. While it may happen less often, audiologists might find themselves providing care to children receiving palliative care services. How can we ensure we're providing the best care possible for these children? Today's guests are going to help us better understand that.


Dr. Holly Tegeder Gerth is a pediatric audiologist and clinical leader at Nationwide Children's Hospital in Columbus, Ohio. She is the coordinator of the inpatient audiology program and provides diagnostic services for the critically ill and medically complex inpatient population. Dr. Jacinto Fragoso is a pediatric audiologist at Nationwide Children's Hospital in Columbus, Ohio as well. He provides diagnostic and rehabilitative audiologic services to children of all ages. His interests include implantable hearing devices, electrophysiology, and clinical and translational research.


Just a couple of financial disclosures. I am the host of On The Ear and receive compensation from SpeechTherapyPD.com, and Drs. Gerth and Fragoso receive compensation from SpeechTherapyPD.com, for their contribution to today's presentation.


[INTERVIEW]


[00:02:58] DS: Jacinto and Holly, I'm so glad you're here. I read your amazing article in The Hearing Journal and I just knew this would be a fantastic topic for us to talk about. So, thank you so much for joining me.


[00:03:09] HG: Thank you so much for having us.


[00:03:11] JF: Yes, thank you so much. This is very exciting,


[00:03:12] DS: This is going to be a lot of fun, but also kind of sad. So, I don't know how best emotionally to approach this subject, because I feel like you guys have a lot of expertise here. But this is clearly a really sensitive delicate area of clinical care. Just to start things off, I'm kind of curious how you each would define palliative care and kind of how you landed in a position where that's a part of your clinical expertise?


[00:03:36] HG: So, I work primarily in the inpatient population. I spent a lot of time in the NICU or on the hem-ONC units, and it's not uncommon for us to run into patients who are receiving palliative care during their stay because of whatever medical condition that they have. To me, palliative care is a multidisciplinary care that is used to support the patient, to support their outcomes, support what their goals of care are, what is important to them. Sometimes, when we have really complicated medical conditions, their goals might be very different than otherwise healthy patients. Palliative care comes in to listen to the family, to learn what's important to them, to talk about their goals of care, and to see how they can work with the general medical team to advocate for those families.


[00:04:30] DS: And then, Jacinto, did you have anything you wanted to add to that?


[00:04:33] JF: No, I actually think Holly did a fantastic job of kind of summarizing what we're dealing with here. Like Holly was saying, she deals primarily with that inpatient population, which has a whole host of issues other than your typical clinic patients. This whole project kind of got started when I was a fourth-year extern at Nationwide, and I would rotate with Holly on the inpatient unit. It was actually a clinical poster I created in conjunction with Holly and Ursula and the palliative care team at Nationwide that was presented Eddie and AAA in 2020. It's been the kind of great because we've been really sharing a lot of knowledge that a lot of audiologists don't really know about, especially within palliative care and hospice care.


[00:05:11] DS: Absolutely. Would one of you mind breaking that down? I think it's probably pretty commonly confused hospice care and palliative care, what the differences are between those two, because I know they're not the same thing. But it sounds like the details can often get a little bit confused there.


[00:05:24] JF: Palliative care is really offered to any patient who had a serious life limiting chronic illness or had a tragic medical event. So, really, anybody who needs any assistance with care coordination, social, emotional support, as well as a big part of it is pain management with palliative care as well. And that palliative care can follow a child from a few weeks to their lifetime. As opposed to hospice care. Hospice care is actually an insurance benefit, where it was agreed upon by two physicians that the life expectancy of that patient is six months or less. 


[00:05:59] DS: Gotcha, I see. So, it sounds like palliative care, you might be in it for the long haul there, hospice care is going to be a little bit more short term. I see why palliative care, if we don't know if it's indefinite, we're going to need a lot of professionals on board. I'm curious, maybe this question starts with you, Holly. Was there any special training you had maybe in graduate school or anything like that to prepare you for this kind of a role? Or maybe either clinical skills or just more like counseling skills you might have had that drew you into providing this kind of care?


[00:06:29] HG: I would say no, not at all. I think this is a really niche part of audiology inpatient care alone, but also working with these really complicated, medically complex patients. So, I've been at Nationwide for about seven years, and I was at Children's Healthcare of Atlanta for three years inpatient before that. I've just had a really long kind of run of working in an inpatient setting where we see these more complex patients. I would run into a situation where something popped up with palliative care or family goals that didn't align with maybe what we would typically do audiologically. I just kind of kept an eye on it, and then it would happen again and again.


When in hospice, our fourth-year students, we decided to kind of sit down with one of our palliative care doctors and talk about it a little bit more openly to see, what are you guys doing? And what, as audiologists, can we be doing to support the family as they go through these really challenging times?


[00:07:37] DS: Yeah, that's great to know. And, hey, small world. I did my fourth year at CHEO as well, so I got to spend a lot of time in that CRU, some of those inpatients at Eggleston and Scottish Rite. That's really cool. That's great. I definitely see where some of those skills come in. That's really awesome. And how you could have been drawn into that kind of a role. Yeah, I guess you're right, that we don't really have any training on conversations like this. Jacinto, how about you? What drew you into especially providing care for these kinds of patients?


[00:08:05] JF: I guess, definitely just being put in that environment. From the get go, I always wanted to do pediatrics, and I was very fortunate to do my fourth year at Nationwide Children's because, like Holly was saying, this is a very niche. Inpatient audiology, you really don't come across too often, they'll usually have one or two audiologists doing it. That's really where I've got the bulk of, one, of my experience and kind of learning from Holly, you can say Holly was definitely my mentor. Because I was with her when I had like my first ANSD case in the NICU, like things like that where you're dealing with terminally ill children, and I don’t think there's enough schooling to really teach you how to have those conversations, or really to prepare you to have those conversations.


[00:08:49] DS: Absolutely. So, that’s a great segue, because I'm curious, kind of what does this role actually look like? I mean, I know it can probably span a lot of different things, it can look like a lot of different things. But when you think of like your most typical version of providing palliative care, where does your role kind of play into that usually?


[00:09:12] HG: I think that we are a partner with palliative care, I wouldn't consider myself providing palliative care, but we're definitely a member of that team when it comes to talking about the goals for this patient, what their family wants, what the patient wants. Obviously, speech and language, hearing, those are all really kind of core quality of life areas. When we're talking about a patient who has a life limiting condition, it's important to think about what are our goals with hearing? What are our goals with speech and language? What are our goals with feeding? The palliative care team does an amazing job of having these really challenging conversations with the families, but we also act as a partner to them.


If we talk to a family and are able to figure out their goals audiologically, we can pass it on to the palliative care team, who can set that up in their plan of care. Or, if they have a really close relationship with the palliative care doctor and the palliative care doctor learns like this family’s only goal is to take this baby home, they just want to get out of here as soon as possible, they can pass that on to us. So, it's kind of more of a joint effort.


[00:10:29] DS: I see. Yeah, that makes a lot of sense. And it probably involves a lot of different professionals. And I guess that it kind of changes depending on who you're communicating with. But I guess, fundamentally, it's about the family's goals in terms of communication. Sometimes, when communication is not the priority at that point, it's just getting home and getting out of the hospital, I definitely see how that can come into play.


[00:10:49] HG: Yeah, it can definitely be challenging to kind of broach the subject. So, we're fortunate and most large pediatric hospitals are fortunate that they do have the palliative care team that they can work with, to kind of set up a good plan for their patients.


[00:11:04] DS: So, what kind of professionals make up the palliative care team? Is it more people in the realm of like counseling, social work kind of thing? Are these more physicians or nurses?


[00:11:14] HG: I would say at Nationwide, I'm not sure if it's the same at every hospital, but there's a team of palliative care physicians. They also have like nurse practitioners or APNs that are on the team. But they're generally physicians or advanced practitioners who have these conversations inpatient with the families. Now, once the family is discharged, that's kind of out of my realm, and they might get more home health services through palliative care. But I know when we're kind of addressing these inpatients, it's mostly physicians or those advanced care practitioners. I'm guessing too, that social work is involved for more of the outpatient setting.


[00:11:57] DS: That makes sense. Again, it's got to be hard, because it's probably just so variable, depending on the condition of the child, the prognosis for them. But I'm curious how often you see families just rejecting audiologic care, because they think – well, not they think, I mean, they have other priorities at this point. I have to imagine that those conversations are really challenging, because our whole role is we know how important eating, and hearing loss, and making decisions for communication are really important. I have to imagine those conversations are pretty challenging. How often are you running into situations like that?


[00:12:33] HG: I would say that, in these kids who have really complex medical conditions or life limiting conditions, I and my co-inpatient audiologist, we go into it with the mindset that hearing is really important, but the most important thing is that this family is able to meet their goals for their baby and get what they want out of it. It's very different than an outpatient, if you have a baby, you're screened by a month, you're diagnosed by three months, amplification by six months, that just kind of goes out the window sometimes. Because it's so important to realize that, while that to us is of paramount importance, to these families, it's just not even on their radar and you really have to respect that.


I wouldn't say, for these really complicated kids, I would say that it's not uncommon for them to say, “We don't want to do audiologic follow up. We just want to get our baby home and enjoy them.” For that, we are more than supportive. I would never push her or try to convince them otherwise, because I'm not in that situation, and I just have to support the family's goals there. It's a totally different world.


[00:13:52] DS: Yeah, that sounds like it. For clinicians who maybe don't regularly work with this population, what kind of skills do you think they need to come into this world, prior to even considering starting to consult on these cases or work with an inpatient population, what kind of skills are really important in that kind of clinician?


[00:14:14] JF: I think one of the most important skills is flexibility. Like Holly was saying, we love one, three, six. We love one, two, three, but when dealing with these patients, it's important to become creative and become flexible. We all love evidence-based practice, but there's a time and a place for evidence-based practice and, with these patients, you're more there, I think, to listen and to hear the family's goal for their child. Sometimes, when you're not providing that evidence-based practice and you're hearing the parent out and you're agreeing with them and you're giving them the support they need, that does so much more wonder. You develop such a better trust and relationship with the family, as opposed to saying, “Oh, no, I have to do this screening now. This is the law.” It's really paramount to remain flexible, I think.


[00:15:10] DS: That's great. I'm curious too, I guess when it comes to inpatient, I'm assuming there's a lot of clinicians out there who have maybe never provided inpatient care before. If either one of you would be willing to share just a little bit about what that looks like, are you doing your hearing evaluations at bedside? Do you guys have a booth in your hospital that you walk your patients down to or wheel them down to if needed? If you wouldn’t mind describing that kind of process, I'm sure there's a lot of listeners out there who'd be curious as to what that looks like.


[00:15:37] HG: So, we spend a lot of time in the NICU. Nationwide has one of the largest NICUs in the country. We're responsible for all the newborn hearing screenings in the NICU. Then, of course, the baby refers their hearing screen, we do the diagnostic ADRs at bedside. Then, outside of the NICU, we do a lot of hearing testing for our hem-ONC patients who are getting ototoxic meds, or our cystic fibrosis patients who are getting ototoxic meds. We do also just kind of general consults for like, our rehab patients who have been through a trauma and need an assessment of their hearing, or a non-accidental trauma or something like that.


Behavioral testing can be done at bedside if obviously, if the kid is older, unable to participate. If the child needs CRA, where we would get too distracted in the room, we can bring them. We have a – it’s a pseudo inpatient booth, it's kind of halfway between the outpatient building and the inpatient building. So, we're able to take them to that. And then all of our ABR equipment is on carts, so we can wheel it to bedside or to procedure center or wherever we need to.


[00:16:51] DS: So, it sounds like similarly to providing palliative care, being an inpatient requires a lot of flexibility. There’s a lot of mobility, whereas clinicians might be used to their equipment being very stationary. It sounds like the opposite is true for you all. You’re probably always trying to find your ABR cart and where did it go?


[00:17:09] HG: Yes, definitely. We're kind of all over the place. The one thing I really like about it is no day looks the same. So, I don't always have an eight o'clock eval and a 10 o'clock ABR or whatever. Each day is so variable. You might have sedateds in a day, or you might be in the NICU all day, or you're kind of just all over the place, going where the consults come from. 


[00:17:32] DS: Make sense. It's a lot of stress keeping up with all of it, but I'm sure it's really rewarding too. So, kind of getting to the article you guys publish in The Hearing Journal, it was mostly on, I want to get the word, was it service delivery models or clinical care pathways, maybe?


[00:17:49] HG: Yep, clinical pathways.


[00:17:51] DS: Would you mind breaking those down a little bit? So, for people who were maybe currently provided or currently on a – sorry – currently providing audiologic care for a child who's receiving palliative care, you made that clarification earlier, and I think it's helpful, but it's hard for me to not get those mixed up.


When we're thinking of providing audiologic services for a child receiving palliative care, it sounds like you all have some proposed clinical pathways for ways audiologists should approach that. So, whether it's someone who currently works with this population, or is considering a job here, or maybe they're a student who's just really interested in being an inpatient setting, would you mind breaking those down for us?


[00:18:27] JF: Yeah, definitely. So, we had three clinical pathways that we proposed for this patient population, the first being watch and wait. As the title explains, it's not moving forward with evaluation and or treatment, rather, monitoring the child as they progress through their medical treatment. Second would be audiologic intervention with hesitation, which is appropriate audiologic intervention, but with the alteration of best practice, or those best practice timelines and recommendations. And then our third clinical pathway is, again, typical audiologic intervention. Moving forward with best practice by both assessing hearing sensitivity, and then rehabilitation on a standard timeline.


[00:19:10] DS: Okay, so that's great. I'm hoping we'll be able to break those down even a little bit more specifically. I'd love to hear some specific cases for those. But I'm curious how you guys ended up with the clinical pathways?


[00:19:22] JF: So, like Holly was stating earlier, we did work together and collaboratively with one of the physicians, one of the docs on the palliative care team. As you can imagine, there's very little to no research on palliative care in audiology. A lot of it is based on personal experience, as well as with palliative care’s input on how best to move forward and how best to navigate these patients.


[00:19:49] DS: That's great. I'm curious what future research in this space looks like for you. Where do you all see the research going? Because I agree, I tried to do a little bit of digging before a conversation and there just isn't very much at all. So, what kind of big questions do you all have when it comes to the audiologist’s role in palliative care?


[00:20:05] HG: I think it would be really cool down the line if we were able to take a focus look at audio, like pediatric audiology and palliative care to see, over the course of a year, how many patients are choosing which pathway? And are we able to follow them to see what their outcomes are to determine is that pathway the best for that family? Or what was their experience? Maybe even a survey, what was their experience with the pathway that they chose in regards to their audiologic care? There's just no data to be found. I think it would be important to kind of to start with gathering some data just regarding the the different pathways and what the efficacy of those pathways are with with actual patients and families.


[00:20:57] DS: And Jacinto, did you have anything you wanted to add to that? Any personal research questions for you?


[00:21:01] JF: I don't think so. Now, that was pretty much the same direction. Again, research is definitely hard with this patient population as well. As you can imagine attrition rates, just because due to the life expectancy of some of these patients, it's really hard to get a longitudinal outcome on these patients. So, there's a few bumps and issues with that. But then there are a lot of different angles you can go at, such as counseling techniques. I mean, there's a lot of good research on counseling and audiology, but there's never always going to be one good way for every patient or every family. So, it'll be interesting to see how things go moving forward.


[00:21:43] DS: Would you all mind breaking down a little bit more each of those – sorry, my brain has already blanked, care pathways. Clinical pathways, either, whether it's like a specific case you've had with one of the pathways or just like a little bit more of a breakdown of what that might actually look like in practice?


[00:22:00] JF: So, watch and wait. I run into a few times where you just go on for the newborn hearing screening, and now's not the time. Inpatient is pretty good on monitoring vitals, when isn't an appropriate time to do a newborn hearing screening and when it's not. So of course, they're monitoring, is the baby healthy enough? Is now a good time to do it. I've had a patient where they just refuse to do a newborn hearing screening. They were sent on palliative care and their goal is just to take their baby home. So, we deferred the screening and any follow up testing.


[00:22:34] HG: And kind of going off of the second pathway intervention with hesitation, I feel like we run to this fairly often as well too. This would be, again, another NICU example. But like if a baby referred their newborn hearing screen, and but has a lot of medical concerns going on, just a lot of balls in the air, we might wait to do the follow up diagnostic testing until the family is at a place where they're ready to kind of go down that pathway. So, the family is saying, “Yeah, this is important to us and we know it's important to get this information. But now is not the time because we are dealing with kind of bigger issues.” This would be an intervention because we kind of initiated that audiologic process, but hesitation in that we're not following that typical pathway of referred newborn hearing screen, automatic diagnostic, let's get on with hearing aids.


[00:23:36] JF: And then the third is typical audiologic intervention. So, just following best practice and best timelines, diagnosing hearing loss, and then recommending appropriate rehabilitation based on that diagnosis. So, such as, I mean, it's common for us to see hem-ONC kid, ototoxic hearing loss, and then subsequently fed with bilateral hearing aids.


[00:23:58] DS: Sure, that makes sense. That makes sense. Thank you, guys, for breaking that down. That's really helpful. I think it's helpful for listeners out there to like, start to picture kind of what this role actually looks like, and what kind of – if you're, in the moment trying to work with a family to develop a plan, I mean, oftentimes, they don't know the impact that you know, unaided hearing loss can have on later communication, because at that time, they're not focused on later communication. They're focused on current health.


I'm curious in the experience that each of you have had, how much of prior knowledge of different medical conditions and things like that, how much does that come into play when it comes to counseling these families? Because I have to imagine that some conditions, especially some chromosomal syndromes, things like that, has really poor life expectancy. Maybe we don't go too deep into “here’s what hearing loss can impact” if you do have a diagnosis versus families where, maybe their diagnosis is something that you've experienced many times before and the prognosis is a little bit better. I'm curious how you juggle those two things. I have to imagine that's difficult in the moment.


[00:25:03] HG: Yeah, that can be a little bit challenging. I think that the most important thing is to remember that it always is going to kind of come back to what the family wants and what the family's goals are. Even if I have a preconceived notion like, “This baby's life expectancy is one year. He doesn't need anything,” maybe the family wants to know, “Can he hear me when I'm talking to him?” Or “Should I be using more tactile stimulation?”


I think it's really important to go into it with the offer that this is a test that we do. It's very standard on newborn babies. We do have the buy in of the medical team. So sometimes, if the attending physician, or the nurse practitioner that follows this baby closely has a more connected relationship with the family, they might broach the subject of how are you feeling about the hearing screen? Is this something that you want before you discharge home on hospice or palliative care? So, that helps as well.


But I've been surprised before where babies that I know have a very life limiting condition, the families want that information, and they want that knowledge. If the baby passes the hearing screen, they're just so happy. On the flip side, if they don't, then you just hate to be the one to give that news. But it is a tough tightrope to walk because you want to make sure they have the options, but you also don't want to just add kind of one more thing for the family to have to worry about or stress about.


[00:26:44] DS: That really helped answer it and I think that was really specific. I think that's also a good reminder that you're juggling a lot of different things there with each of these families, and it's never going to be a clear-cut answer for any of them. But I think it is helpful to know, as much knowledge as you might have about some of these conditions, there can always be surprises there. So, it might not be a good idea to always rely on previous experience.


Speaking of some of the more complex medical conditions you all see, what are some of the professionals you all work with? Who do you really rely on? I know, there's probably a lot of people involved, so any of the professionals involved is, of course, interesting, but I'm curious who you really work closely with, especially for these children who are in palliative care?


[00:27:26] HG: I think the main would definitely be kind of the medical team, which would be the attending physician, the nurse practitioner, they have a social worker. Then, most of these patients will also have members of clinical therapy, so an occupational therapist and a physical therapist, that really work with these patients more frequently. So, they kind of have a better understanding of what the patient's able to do or not do, or kind of how the family is dealing with all this information. How involved the family is. So, we do work with a lot of different professionals in that setting, and it's not uncommon for someone I've never even met or is totally new to me to reach out and be like, “Hey, what's going on with this hearing stuff?” So, it's always cool to get to work with new physicians or practitioners to kind of have those conversations.


[00:28:26] DS: For children who discharge out of the hospital, do you all provide any outpatient care? Or what does that continuity of care look like if you know they're going to – maybe they come to Nationwide, and they live really far away, but they needed that important care at an early age. How does that continuum work for you all when it comes to working with outside audiologists?


[00:28:47] HG: We absolutely have many off sites, and we see patients and outpatient clinics. If the family does live really far away, we have patients who can apply from all over the country for one of our specialty NICU units. So, we have patients who come from California and Oregon, all the way to Ohio. Obviously, they're not going to be following up locally after discharge. But we make sure to connect them with facilities nearby their home and give them a copy of all their reports and all their kind of audiologic history so that they know once they go home, if this is something they're going to continue to pursue or they're on that pathway, this is kind of what their next step needs to be. This is who they call to schedule this appointment. So, we really tried to make sure to give them all that information.


If you go home with a medically complex kid, the last thing you want to do is spend hours trying to figure out where am I going and what do I need and where's my results from Nationwide? We try to give it to them in a packet just to make it as simple as possible so they can take it to their new facility and and give the parents our contact information as well in case their new audiologist has any additional questions about the care pathway they had.


[00:30:10] DS: Yeah, that makes total sense. I think it's really helpful to have all of the information organized in that way. As someone who works a lot with pediatrics, but I don't have too many children who receive palliative care, I know that there's a lot of conditions and things out there that I'm not even familiar with. Having the information organized in that way would be really helpful and having a connection with audiologist like yourself would be great.


Let's say there is someone in that situation who gets a referral for a child who is receiving palliative care, and they don't have anyone else on their caseload who's receiving palliative care. What do you feel like is some of the most important things for that kind of clinician to know?


[00:30:41] JF: I think it all really just goes back to, again, the flexibility and really the need to really be creative when working with this patient population. A lot of the times, they're medically complex. I mean, for example, it's pretty common that I'll have a patient with a mixed hearing loss or a conductive hearing loss who needs bilateral BAHAs, but they are [inaudible 0:31:04], and so they're mostly supine and they're lying on their back. So, I can't have them wearing two BAHAs on them. Best case scenario, when they're lying on their back, I have to have them wearing the BAHA with a front forehead placement.


So, it's just really, again, being creative with that patient population and being understanding. Is data logging going to be wonderful? Probably not because, again, what we're dealing with is the quality of life and what their needs are in that moment. Again, with the patient who's been [inaudible 0:31:36], they most likely have a few other things going on. So again, in my personal experience, I've gotten so much further with families where I've acknowledged that this is not easy. Data logging is not great, and I understand that. I see that you're trying. Just keep on doing what you're doing.


I've been able to just develop such good relationships with parents when you get down to their level because if I'm seen as a professional who's up on his high chair, saying data logging needs to be 10 hours a day if we want to reach our speech and language goals, if we really want to get the most out of these devices. We're just kind of backtracking, and we're kind of not really doing what we're supposed to be doing, which is being a support for that family.


[00:32:20] DS: Wow. That's really great. I think that's a great reminder. You guys mentioned it earlier with how much we emphasize evidence-based practice, how much we emphasize one, three, six, and with these kinds of families, that just isn't really possible sometimes. I think the same idea when it comes to fittings, hearing aid fittings, and when it comes to data logging. I think that's a really great reminder that the flexibility is key, and that this family might have completely different priorities than what we would typically see with a with a pediatric patient. So that was great.


Holly, did you have anything else you would add to that? Any information or skills or recommendations you would give for a clinician who's newly working with this population?


[00:32:58] HG: Yeah, actually, I think the most important thing is just to be as understanding as possible. With these medically complex patients, usually it's a great effort on the family's part to make it to these appointments to get their complicated child in the car and drive the distance and, they're trying, they're just trying their best. So, if they're late, or they can't make an appointment, or they need to reschedule, I just think our understanding and grace is so important for these families. Because, again, hearing isn't the number one thing on their mind. They're trying and we just have to kind of work with them.


And two, through the past couple of years with the pandemic, obviously, we've seen the rise of telehealth services and I've heard, time and time again, what a blessing these kinds of appointments can be for families who have like troubleshooting issues or things like that, to not have to drag their kiddo to the clinic for things like that can be done over telehealth. So, just being creative with the appointment type, being gracious with the struggles that the family have. And like Jac said, like, he hit the nail on the head when you just get down to the family's level and you realize that they've got a lot going on, and you're just there to support them the best that you can.


[00:34:23] DS: That's great. I'm curious, kind of on the flip side of that, other than the obvious, like, the opposite of your answers. I'm curious if there's any like missteps or common issues, maybe you guys have seen if you've supervised students before where, like things I can imagine, I hope this doesn't happen, but I'm sure it does, because we're all human, making like a an off color comment about a diagnosis. Or just missteps you've seen with clinicians who work in this space and things for maybe people to avoid, because it is such – you’ve mentioned, it's a tight rope, these are delicate conversations, and anything come to mind there, just missteps to avoid.


[00:35:07] JF: Yeah. I think one of my favorite things I always think about. It's so common, you're going to have a patient, a kid with 30 things on their problem list. My number one thing is never judge a child by their problem list, because like we were talking about earlier, you really know what you're not getting into, especially if you've never met this child before. Because you've seen miraculous things happen with a child with a problem list that's two pages long. Unconscious bias is very hard. It's there and it's very easy to forget about it, not just with palliative care, but autism and other social behavioral issues some children have. Some providers will have that unconscious bias where, “Oh, this is going to be the outcome, this is what's going to happen.” But it's imperative to overcome that bias and go in with that fresh mind. People like to tell me that I'm overly optimistic and positive, which I am, because that's the goal of all this, isn't it? I want to help every child I can to the best of my ability, regardless if their problem list is zero or if there's 35 things on their problem list.


[00:36:15] HG: Yeah, I think that's awesome, Jac. We definitely kind of run into that regularly where kids can be judged by their problem list and not by their actual self. I feel like, on the inpatient side of things, too, we get judgments a lot of time from other medical providers. So, maybe a nurse or a PCA, who has the patient and the family is on board for proceeding with audiologic manager, they want to do hearing aids, and we’ll have nurses say like, “What's the point? Why are we doing all this? It seems like really overkill.”


They don't understand the importance and the family is on board, so we really need to get like the patient's nurses and medical team on board too. We just never want to say like, “There's no point in doing this if your child has a life limiting diagnosis,” because it's important to the family if they've chosen this route. So, trying to mitigate those negative words from other providers.


[00:37:25] DS: Yeah, that makes a lot of sense. As unfortunate as it is, I can definitely see how that comes into play. I mean, we see that happen with adults and children, with people not really understanding or appreciating audiologic care. I can imagine when the stakes are really high that other professionals might want to brush it to the side, but when a family really wants their child to hear them sing a song in these early stage of their life, I can see how those kinds of priorities will pop up for families and how we have to advocate for them, not only when it comes to the school system, and family members, when we think of advocacy, but also to the other professionals that might be seeing this child. I think that's a really helpful reminder.


I'm curious what each of you would say, I mean, I know there's got to be a lot of things that are challenging about this job. But what is probably the most challenging aspect of it for you?


[00:38:12] HG: I think, for at least for me, one of the most challenging things is getting other providers, medical providers, to understand the importance of what we're doing. Because we can explain it to families and we can respect to their feedback that they want to pursue or they don't want to pursue and that's fine. But it can be really challenging to convince medical providers, why this is important, why we're doing this on these complicated cases, and that hearing is important. We all hear. That is one of the fundamental things, one of our fundamental senses. To try to explain that to a nurse or another provider and get them on board, that can be really difficult sometimes.


[00:39:02] JF: I absolutely agree. I don't really think the difficulty lies within the audiologic care, like diagnosis and rehab recommendation isn't the difficult part. It's really managing those relationships outside of the family and within a lot of these families, they're tired, they're exhausted. They've seen five other providers before you in the same day. You're their sixth appointment. We’re usually the last of the day. The child zonked out. They're so tired. A lot of it is building that rapport, because, again, that family is going through a lot emotionally. And like Holly said, just to even get to the hospital, sometimes if it's an outpatient appointment is a whole production. I think the hardest part about navigating all this is just ensuring that you're giving the parent or the family what they need.


[00:39:54] DS: I think both of those are really great reminders, and I think it's really insightful to hear kind of what those challenges are. Honestly, I feel like if someone who wasn't in this space, they would say like, “Oh, it must be really hard to work with children who are really sick.” And I know that has to be extremely challenging. But just to think that the day to day grind is more against people not understanding how important this work is. I feel like that would be really draining. So, I appreciate your sharing that.


Okay, so with giving you an opportunity to flip it around, though, what do you think is the most rewarding aspect of working with children who are receiving palliative care?


[00:40:27] HG: For me, I think it is being able to give these families good news or to give them hope that their child, though they might have a life limiting condition, they might only be around for a couple months or a couple years, they have access to their parent’s voices, they have access to hear their brother and sister. So, it's able to take kind of something that was really disappointing or devastating with the hearing loss, but let them know that like they can hear you, they can hear you singing to them, they can hear you tell them I love you and giving them that kind of peace or that knowledge.


[00:41:06] JF: I think the most rewarding part for me, is really just the rapport that I develop with these families. So, as I was talking earlier, a lot of these times the data logging is poor, or we're not really utilizing the device, but the parents still shows up, and still does their part. I think I've made such great connections, when I say there's a time and a place when it's now, we should be pushing this. And when I say this is not the time for this, this is not the time for the hearing aid. This is not the time for the BAHA, you just develop this relationship. And you just become – I don’t even know how to explain it, it's just rewarding in a different way, that you're able to be there for that family.


And again, you're just there chatting, just about their day to day, just getting to know them. Because again, that parent is going through so much emotional trauma, social trauma, it's a lot to unpack, and as audiologists, we really have a unique perspective, because having an appointment with an hour, I have an hour to chat with you, I have an hour to learn about you, and to maybe guide you in different areas, get social work involved, see how I can help you other than audiologically, which is I think another cool reason why being an audiologist is so wonderful.


[00:42:24] DS: That's great. That's great. And I think that's a really great story. I love this idea that we sometimes can be the connection to these other fields and people might not even realize they need other supports. When we're making referrals to physical therapy and occupational therapy and social work, I think that's a great reminder of how broad our role can really be. This kind of like series we're doing on the podcast is just the different, it's called the full scope of audiology, but the thought is we take on a lot of different roles with one name in terms of audiologist. I think all of this information about palliative care is great, and it's just a reminder that sometimes we are that go between for a family to another service provider that they really need care from. So, that's another great connection to that. I appreciate it.


I wanted to ask, I wasn't sure if you wanted to tie these in, specifically to any of the clinical pathways. If not, that's okay. I'm just curious if there are any cases or patients that you've worked with that come to mind when you really are trying to explain to someone what you do when it comes to working with children who receive palliative care. If there's anything you – any stories or any cases you want to share from that.


[00:43:38] HG: I will say I've had a lot of experience working with patients who – we have a specialty BPD unit. So, bronchopulmonary dysplasia, which is chronic lung disease babies. A lot of these babies are trached in vent, and they're in the NICU for maybe the first year or two years of their life. So, they're kind of long-haul babies. And many of them receive these palliative care services, not just for kind of their goals of care, but also pain management and just kind of looking at the child as a whole.


I will say that because these children are so complicated, most of them are very premature babies born at 22, 23 weeks, who have a laundry list of problems that have risen over their year of life. A lot of times we do delay doing testing on these patients until they're medically stable. We might not even see them for the first time until they're eight or nine or 10 months old. A lot of them end up not passing hearing screens, doing diagnostic testing, a lot of them have kind of fluctuating hearing losses.


These families have come from all over the country, they're basically living in the hospital with their babies. They're very complex babies. I feel like a lot of those patients fall into that clinical pathway to the intervention with hesitation, because the families are really anxious to know like, can my baby hear? We're working on all these developmental therapies in conjunction with their medical treatment, their respiratory needs. But we're also working on sitting up and following gaze and social cues. 


A lot of these families want to know, can my baby hear? If not, what is our plan for it? A lot of these kids because they do have such a fluctuating hearing loss, we've ended up doing this intervention with hesitation, where we're monitoring their hearing with kind of serial diagnostic ABRs. Because they're not ready to jump into a hearing aid. The family's not at that point, their hearing is fluctuating. Looking at their goals of care, they're interested to know what the hearing is, but maybe less so anxious to kind of jump into amplification. But then on the flip side, we have babies on that unit where after the first ABR mom wanted to fit with a BAHA and we followed him through his whole stay there, and his hearing eventually improved, and he was able to discharge home back to California, actually, and eventually no longer need the BAHA. So, we kind of see both flip sides of that coin. Again, it all coming back to how motivated the parents are in what they see as kind of the long-term goals for their child.


[00:46:52] DS: That makes sense. I'm curious, I have to imagine that babies who spend a lot of time like these months and months in the NICU are far more likely to have a conductive hearing loss if they're spending a lot of time laying down and issues like that. So, my assumption is you guys probably have to fit a lot of BAHAs in situations like this. I'm curious, how the role of ENT comes into play. Do you guys see a lot of flat temps, and a lot of like maybe temporary BAHAs for these situations? How does that normally go with babies who might be, you know, they spent a lot of their day laying in their crib? Counseling families through that, It’s pretty different from how I would have to counsel a family with a soft band BAHA because their child's rolling around or pulling it off their head. What is either that counseling look like or that collaboration with ENT care?


[00:47:41] HG: Yeah, I feel like that could be a whole another podcast episode. So, we actually have done a couple of studies on this population with bronchopulmonary dysplasia, because they do have this chronic fluctuating hearing loss, whether it's mixed or sensory, neural or conductive. A lot of these patients, we will just more closely monitor with ABRs. But some families do opt to go ahead and sit with amplification with just close monitoring, so we can turn down the amplification if it's too much or if the hearing is improving.


I would say most of these kids have – they're just like very swollen, they have a lot of edema. So, their ear canals are very stenotic. We do consult ENT pretty regularly on these kids. But I would say a lot of the times, ENT is not even able to visualize that you're drawn because of the edema, the facial edema, and then kind of translating into ear canal edema. So, I'm sure part of their kind of fluctuating hearing loss definitely is that that swelling, causing this kind of stenotic canal on top of who knows what else in the middle ear is going on. We're definitely working with ENT pretty closely, and they know when they get a consult for a kid on that unit, that is not trach related, but hearing related, that likely they probably won't be able to see anything.


[00:49:17] DS: That makes a lot of sense. I'm curious, Jacinto, if you had any specific cases that come to mind or patients that you've interacted with that you feel like kind of represent what it means to work in with children with palliative care?


[00:49:28] JF: Oh, definitely. I think one of my favorites is always again, most of these, most of the ones I've interacted with, were definitely in the audiologic intervention with hesitation. So, one of my favorite stories I remember, when I was a fourth year at Nationwide, and it was this mom, this child is non-ambulatory nonverbal, just kind of the whole shebang, has bilateral moderate sensory neural hearing loss. Mom was just kind of at her wit's end because I think we've all run into the kids, especially when they're in those wheelchairs with the head boards that they'll constantly thrash and move their head constantly knocking their hearing aids out.


Mom is absolutely wonderful. She's a CEO or some very high-powered businesswoman. But she still gives it her all for her child. She was doing all this ADA stuff. It's wonderful and she she's like, “I keep doing that. I keep putting them on. I keep putting them on.” You can just tell she's exhausted. That was always my favorite interview question is like, when did you realize you were doing something but you weren't providing audiologic care in that moment? Hey, mom, let's kind of take a few steps back. Yes, we went ahead and fit her. But maybe now is not the best time for her. Because now, I think the best time is let their mom enjoy a cup of coffee in the morning as opposed to trying to force these aids on her child who clearly isn't tolerating them and clearly isn't succeeding at the moment.


I find that a lot with my patients, that we’ll kind of backtrack that, yes, we fit them, and we're kind of stagnant right now, and that's A-okay. And that's where the flexibility and the creativity really comes in with this patient population and just realizing this is the best-case scenario, not the best-case scenario, but this is best case for this patient right now and for this family right now. You're not the one who has to go home and put all this effort into it. That mom does.


[00:51:29] DS: Yeah, and how reassuring for that parent to for the professional to be the one to say, “Hey, it's okay to take a breath. It’s okay to relax.” Because they're expecting you to be the one to jump down their throat, that they're not following instructions perfectly. So, I think that's a helpful reminder for us. Not only are our patients really important, but their families are people too. The way that we communicate with them can sometimes be really, really important.


Holly, did you have any specific cases that came to mind? Just anything like kind of more related to your palliative, providing audiologic care for children who are receiving palliative services. If there's anything that that encapsulates that experience for you, or one that's really memorable.


[00:52:08] HG: I have a couple. We've had a couple kind of leaving the NICU and going to the hem-ONC unit. We've had a couple of kids on that floor that we followed over time, and they were more the typical intervention, because they were generally older kids, who then lost their hearing due to chemotherapy treatment. The families were very motivated to provide that consistent access to sound especially because these kids were getting lots of treatment. They were meeting lots of new people every day, they had a lot going on. Their families wanted them to be able to kind of be involved in their care.


Those cases can be really hard because not all those hem-ONC patients survive. And so, we do lose those kids from time to time. But it's good and reassuring to know that, while they were still here, the family felt like they were able to provide them the access that they needed and that they were doing everything possible to support their kiddo during that time. To support their kiddo being actively involved in their care during those last months or weeks or whatever.


[00:53:29] DS: Yeah, that has to be super challenging. But to be able to support that family in those kinds of moments, they need somebody who's on their team in those kinds of times. So, it sounds really important, but it does sound pretty heart wrenching too.


[00:53:43] HG: Yeah, it definitely can be challenging.


[00:53:45] DS: We're kind of coming up on the end of our time here. It's flown by so fast, which is pretty insane. But as we're starting to wrap things up a little bit, I was curious if we could talk, we haven't really talked too much in this podcast about more inpatient care. I think you're right, like that would be a great conversation for another time. So, keep me in mind in case you guys are interested.


When it comes to some of the challenges you all have faced when it comes to working, inpatient, I'm curious – okay, so like the big things that come to mind for me fitting a hearing aid, like how in the world does that work? Do you bring them down? Do you have a wheelie or something? Or is that a bedside test? Getting an ABR on a child who was trached and vented, what in the world do you do there? How is that possible? Any major inpatient stories or things you'd like to share for those out there who might not have ever been in an inpatient setting?


[00:54:40] JF: Yeah, I actually have one story that I'll always remember for the duration of my career as well. He was older, he was 2022 inpatient, and just getting so much chemotherapy. His hearing dropped dramatically. His word recognition dropped dramatically and he was going to be admitted long term. And so, we fit him. Well, we first started with a pocket talker, just to see if that would help or do anything for him. Absolutely not. It's not 1950, I know. But we tried. And Nationwide is so good about it. I'm just like going above and beyond for these patients because it's just what we want to do and what we have to do and what we pride ourselves on doing.


So, I did, I fed him. I was fortunate enough where he was able to come to the outpatient clinic, I fed him with loners. And then he was admitted for quite some time still. And I remember he had some complaints, he had his tablet. He was like a 65-year-old man. He had all the complaints on a tablet of what he didn't like and what I needed to adjust. I ran over with the no ELINK wireless and with a laptop, and did my best to help them out. So, again, it's fun, and it's just doing what you can in that moment, I think is what matters most.


[00:56:02] DS: That is so great. That is so great.


[00:56:06] HG: I would say, yeah, we definitely, we have to get creative. We do as much at bedside as we can, especially for like our immunocompromised patients. For our trach vent babies, we have a really good relationship with the medical team. A lot of times, they'll be able to give them some sedation at bedside just to hold them over for us to get a diagnostic ABR, or we just turn to plan really well with the nurses of when the baby will sleep, maybe they're worn out from therapy. So, we run down.


The good thing about inpatient is you have a lot of flexibility because they're not going home tomorrow, generally. So, if you get half an ABR today and you need to go back tomorrow, you can. We do have that luxury versus an outpatient ABR appointment where they're leaving, so you have to get what you can. If the babies –


[00:57:01] DS: And they’re late, showed up awake, showed up asleep already. That's me in the outpatient setting. That's what I'm struggling through. Those are great. I'd love to have you guys back to talk more things, all things inpatient audiology. We have a lot of listeners who are students who are just really intrigued by all of the different settings that you can work clinically. And I think inpatient is one of the most exciting, and just diverse experiences you can have.


Thank you both again so, so much for coming on to talk about palliative care. I know it's a heavy topic, but you all have made it really fun and really interesting. So, I'm really grateful for that. If there's anyone out there who's listening who had further questions for you all, or had something specific that they wanted to comment on, what would be the best way to get in touch?


[00:57:50] HG: Probably the easiest way would be to just reach out to me via email. My email addresses holly.gerth@nationwidechildrens.org, and I'd be happy to answer any other questions.


[00:58:08] DS: Awesome.


[00:58:09] JF: Same here, email would be best. Mine is jacinto.fragoso@nationwidechildrens.org. Also, the longest email addresses in the world. So sorry about that.


[00:58:25] HG: Yeah, nationwidechildrens.org. 


[00:58:32] DS: There's a lot there. Well, thank you all so much. You have so much great information. I'm really appreciative for the work you're doing. We're excited to see what other research you all come out with when it comes to addressing palliative care, and the audiologist's role in that. So, thank you again for making us more understanding and more clinically adept with this population. We're just grateful for your work.


[00:58:53] HG: Thank you so much for having us. I had a really great time.


[00:58:55] JF: Me too. Thank you for the opportunity.


[END OF INTERVIEW]


[00:59:01] DS: That's all for today. Thank you so much for listening, subscribing, and rating. This podcast is part of an audio course offered for continuing education, through speech therapy PD. Check out the website if you'd like to learn more about the CEU opportunities available for this episode, as well as archived episodes. Just head to SpeechTherapyPD.com/ear. That’s SpeechTherapyPD.com/ear.


[END]
        © 2022 On The Ear