Hosted by Erica Jolene with Dr. Sean Goretzke, Pediatric Neurology | Transcription HERE
In this week’s episode, we hear from Dr. Sean Goretzke, who is a Pediatric Neurologist and Division Director of Child Neurology Services at Cardinal Glennon Children's Hospital, where he has a special interest in managing children with concussions and cerebral palsy. Dr. Goretzke is also an assistant professor of Pediatric Neurology in the Department of Neurology at Saint Louis University School of Medicine.
Dr. Goretzke is the father of six kids and I can say with certainty that this has greatly influenced his very relatable style when practicing medicine, which is something he shares more about in this episode. We touch on a variety of subjects ranging from navigating difficult medication decisions, comfort measures and quality of life discussions, and my personal favorite, the social inequalities that impact healthcare and medicine.
I also appreciated Dr. Goretzke's perspective when I asked him about the things that needed to change regarding healthcare. It is extremely comforting to know that our providers recognize the inequalities that exist and want to see systemic changes in our society so that they can better provide and rejoice in more positive outcomes for everyone.
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Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
Links related to this episode:
Cardinal Glennon Children’s Hospital
Episode Transcription
Erica 00:15
Welcome to Atypical Truth. I'm your host Erica Jolene. In this week's episode we hear from Dr. Sean Goretzke, who is a pediatric neurologist and the Division Director of Child Neurology services at Cardinal Glennon Children’s Hospital. Dr. Goretzke is also an Assistant Professor of Child Neurology at St. Louis University School of Medicine. He has a special interest in managing children with concussions and cerebral palsy. Dr. Goretzke is the father of six kids and I can say with certainty that this has greatly influenced his very relaxed and relatable style when practicing medicine. And this is something he shares more about in this episode. We touch on a variety of subjects ranging from navigating difficult medication decisions, comfort measures, and quality of life discussions. And my personal favorite, the social inequalities that impact healthcare and medicine. Dr. Goretzke is very transparent and down to earth, which really made for one of my favorite conversations this season. Still, I found myself getting so nervous when I would begin sharing something personal, like details regarding our experience as parents and caregivers in trying to navigate the complex world of neurology. It's actually kind of embarrassing, because you can hear this nervousness come out in me as I begin talking fast and loud. And it took everything in me not to just like, re-record that. But I felt like it was important for all of you to witness this side of me as well, the side of me that isn't as cool, calm, and collected when talking to these professionals. So please bear with me, as you all get a front row seat in witnessing my awkwardness. Okay, now that you have my personal confession, let's just get right to the good stuff that we have in store for you.
Erica 02:24
Thank you for joining me today, Dr. Goretzke. I've been looking forward to having this conversation with you.
Dr. Goretzke 02:30
Well, thanks very much. Appreciate it.
Erica 02:33
So we're just gonna jump right into this. I am curious to know, what is your favorite thing to nerd out on?
Dr. Goretzke 02:41
Oh, you know, I guess the the eight to twelve year old child in me still is very sports statistically driven. A huge percentage of my brain storage used for medical knowledge. And then there's a little bit for other things, and then the rest is filled up with useless sports trivia that probably where, if I'm not tied up with medicine or with other family responsibilities, my brain goes back to.
Erica 03:12
Okay, okay. I admittedly will never be able to quiz you on your sports trivia knowledge, but I'll take your word for it. My next question, are you an early bird or a night owl?
Dr. Goretzke 03:25
I've traditionally been a night owl but that has changed quite a bit. I've also tried to, as I age, I've tried to stay in shape mostly to keep up with my kids and not age out too quickly. So my workout time has had to shift as I've gotten older I can't work out after about three o'clock, and so I now I wake up usually at about 5:45 or six and work out in the morning before I go to work just in the basement and so that's kind of forced me to change my habits. But I had been a night owl for most of my life.
Erica 03:59
Okay, do you currently have a favorite song that you turn the volume up for?
Dr. Goretzke 04:05
I don't know that there's one song I would say any Foo Fighters song or any Pearl Jam song. Typically I have I have different playlists on Apple iTunes just for those artists. So those those are those are two of my favorites.
Erica 04:18
All right. What is one of the best pieces of advice you've ever received?
Dr. Goretzke 04:25
Um, you know, I it's a it's a good question. I think probably the best is, you know, don't forget to thank the wife. I think that's probably the best. When you, if you're ever doing public speaking, that if you if you remember that one thing you can screw up a lot of things and the wife will still take you back in at the end of the day.
Erica 04:47
I'm going to make sure Randy listens to that. Okay, tell me something interesting about you that most people may not know.
Dr. Goretzke 04:56
Yeah, I don't I don't know. I would say people probably find this hard to believe because I've had to become quite extroverted in my job and, and overtime; but I was, I was a really introverted, shy preteen and teenager. And, you know, I was a real homebody, and I didn't really, I played a lot of sports, but outside of that, you know, I, I always tell a lot of my parents of teenagers is I would never go back and be the ages of 12 to 18 again, those were those were not easy years. But you know, I just I've had to change quite a bit. I've had to develop an inner self-confidence. I think we all do that to some degree. But I think probably people forget that may not always be our natural thing and we are sometimes forced to go in that direction. So I think people might find that surprising that know me now or have only known me the past 10 or 15 years.
Erica 05:53
Yeah, I certainly do find that surprising. Do you have any pets?
Dr. Goretzke 05:59
I do. It's a little bit of a sore subject. I mean, I think automatically when you say you're not a pet person, people ask quickly, "What's wrong with you?" I do have; I do have six children, which I'm sure you'll get to at some point. So I don't really need any pets. I don't need any other living creatures to take care of. But we have two cats. And my wife, years ago, see, we did not have a daughter yet. So she bought a female dog without telling me. You know, I've never really been a true animal person. But I realized that my kids love them and so I will tolerate them.
Erica 06:36
Okay, I can respect that. What is one thing that you're presently grateful for?
Dr. Goretzke 06:44
I think I'm grateful that in today's world that we're in now my, my family has been able to make it through relatively healthy. Luckily, my wife and I are in jobs that we haven't had, you know, had to have a major change in our in our home life. And I think anybody that's in that situation in today's world needs to feel incredibly lucky because I certainly realized a good chunk of the world and of our country has not shared that same experience.
Erica 07:17
Absolutely. So what comes to mind when I ask you to recall a memory or moment that brings you great joy?
Dr. Goretzke 07:27
I think the birth of my first child was a striking moment in my life that I didn't understand the power that was going to have. I don't think I've ever driven a car so slowly in my life that the day we strapped him into the car seat, and I drove him home. Now, that didn't last very long. But boy, that was a that was a responsibility that I couldn't fathom was in my role. And so that was, that's something I probably don't tell him that enough. But that was amazing without any question. It's amazing to watch my wife go through that amazing how little I had to do with that, but just not really quite understanding the journey that was gonna begin from there.
Erica 08:09
Mm hmm. Yeah, I can totally relate to that. Dr. Goretzke, can you tell me a little bit about yourself and what led you to your career?
Dr. Goretzke 08:21
You know, medicine was not something I intended to do. You know, I talked a little bit about about my baseball statistical nerdship. I went to Emory University down in Atlanta, for a couple of reasons. I didn't really know a whole lot about Emory back then, it wasn't quite as nationally known. But it was a great school and I went down there and was going to be an engineer. But then as I started attacking calculus three and other math classes, I decided there's no way this is what I want that the next four years, let alone potentially the rest of my life to be. I also like science, I had really no ambitions upon entering college though that I was going to be pre-med or go to medical school. And so as I started getting through those classes, and they started introducing some clinical correlations with some of the things we were learning, it just really it really captured my interest. Couldn't really give a why, other than it felt right.
Dr. Goretzke 09:17
And that I think that would be hard in today's world, it was hard back then, without being able to sell any more than that, that it just felt like the right thing to do. You know, how do you know that if you if you can't draw from personal experience, I didn't have a family member who was a physician. My mom actually went back to nursing school but wasn't in that program when I was making that decision. I didn't have some other, you know, life altering experience to some severe medical illness. It just it was a conviction that it felt like the right thing. So then I applied to medical school. I had already met my wife at that time and we had been dating and she was at University Missouri, Mizzou, for undergrad. And so I, I wanted to stay local and I applied to Wash U and University of Missouri, Columbia. And those are the only two schools I applied to, I didn't even apply to St. Louis University, the first go around. And I got waitlisted at both programs. And it was a little odd, I mean, I think even looking back, my qualifications were probably good enough to get into one of those schools, but didn't.
Dr. Goretzke 10:27
And then I kind of scrambled for a year I took the year off. I ended up teaching tennis at a little club that I took tennis lessons at in high school here in St. Louis, and then applied to those same two schools, but said, "Well, you know, I better apply at SLU this time because I don't want to do this a third time." And interestingly enough, it's it's the only school that accepted me. And so that makes your choice really easy about where you should go, and how committed you should be when that's your only option. So I really didn't I didn't know a lot about SLU medical school at that time, or how it differentiated itself from from other places. But it is amazing how your career trajectory and your future employment is sometimes those decisions are made for you. And it seems like fate, but maybe you don't have as much control over that as you would think what would I do for a career. Had I not applied to SLU, or SLU agreed with those other two schools and didn't accept me, you know, I can't even envision what my other career would be. Besides what I do now.
Erica 11:31
Wow. Yeah, it kind of seems like that was meant to happen. How long have you been practicing medicine?
Dr. Goretzke 11:39
So I graduated from medical school in 97. I also joined the Navy. So that's a an interesting story.
Erica 11:50
Ooh, do you mind telling me more about that?
Dr. Goretzke 11:53
Well, so I joined the Navy again, not because of, you know, I wanted one of those, I wanted to wear that uniform. But I got my financial aid paperwork the same day I got a letter with scholarships available from the Navy and the Air Force to pay for school. And that looked a lot better than what would end up being 450 grand between tuition and interest paid back over over 20 years. And so I, you know, how do you pick Navy versus Air Force? Well, the Navy was the only program offering four years of funding of tuition, Air Force only had three years slots left. And I said, "Well, I mean that that's enough to make a tiebreaker for me." So I joined the Navy.
Dr. Goretzke 12:38
Come to find out 15 years later, the only reason they had four year slots left is somebody made an accounting error and they gave out about 50 too many four year scholarships that year.
Erica 12:50
Wow!
Dr. Goretzke 12:51
So you know, again, so I mean, it all ties together amazingly, randomly over time. But so I go to become a pediatrician with the Navy and then somewhere in the middle of pediatric training, I said, "Man, I really love this neurology thing. I think I'd like to be a child neurologist." But I am confident my wife would not have let me to go go back and do another residency if I had to go back to making resident pay. So in the Navy, I had to practice as a pediatrician at a Navy base for four years, and then I was already up to the Lieutenant Commander Officer rank. And they had a program at that time where you could make your officer pay and still go back and do other medical training. And so I you know, it was at least, we had four kids at the time, and it was enough money that I could go back and retrain again.
Dr. Goretzke 13:42
And so again, I don't think I'd be a child neurologist, if I hadn't found my way into the Navy. And, and just, you know, all of these random things. And again, I think, at least from my standpoint, with my career satisfaction, clearly, things happen for a reason. And it kind of gets me to where to where I am now with some other twists and turns. But you know why neurology, it just, it just we'll probably get into that some more. But it had just the right mix of a lot of things that I enjoyed intellectually, a great mix of acute and more chronic disorders, things I could treat things maybe I couldn't treat, but I could serve another role for families. And again, I need a field where I've got to constantly grow and we still know so little about the brain that getting to learn something new every week. And sometimes many things per week really draws my interest and is what keeps things going.
Erica 14:42
Yeah. Wow. So...
Dr. Goretzke 14:44
That's a lot to unpack, isn't it?
Erica 14:46
Well, you segwayed into some great questions that I have for you already, specifically with neurology. There is so much unknown, and a lot of it is a gamble. I wouldn't say a lot of it; you know that better than me. I feel like we've had a lot of conversations where it's very much trial and error. And you having this history of things, either sticking or not sticking for a reason, how does that impact you in your role as a neurologist, having that insight?
Dr. Goretzke 15:19
I don't know I've, I've considered myself, the longer I practice to at least be open-minded that we have so, so much to learn and we actually know so little about so many things, that if something comes out of left field a little bit, or something seems like it's a little bit - experimental probably isn't the right word - but as long as it's a potential therapy, where the risk is not super high, or the threat of harm isn't super high. You know, it's one of those things, I become a little bit more open-minded over time. I also, I'm pretty upfront with families, when we're in that situation. You know, I tell them, "I don't really know what this is gonna do, or I don't really know that this is safe." I always am pretty careful with telling them, I think we're skipping a few steps of things that we really should go through first, that even in the end may not be the right fit for your child, or may not feel like the right way to go. But I do need you to have a little bit of trust in me that I'm not going to steer you down the down the wrong road.
Dr. Goretzke 16:21
You know, I think that's the thing that's hard to convince parents of is what are really true mission is - which is to really help your child and help you as a family. It's not to be right. I don't want to be right. I mean, it's nice when I'm right and I can accomplish those goals. But, you know, I have families come in that are doubting or, well, how did you make this decision? And it's hard to explain 10 years or 15 years or 20 years of experience and all the things I've learned that factor into that. And even though I may never know your child as well as you will, I certainly there's, you know, there's a lot that 10 or 20 years of experience should play in that I've seen 50 versions somewhat similar to this. So I hope you trust me to bring my expertise into that as we try some things that maybe aren't clearly as as as directed as they need to be, or there's a clear option one or option two. But I will try to. I don't know. I guess I put my own hat on, I put my parent hat on, and say I think with everything I know from what I've done in my career, I think this is what I would do if he or she were my child. And I think that's what; I don't think every parent understands that or trust me that that really is true. But that really is how I make a good bit of my decisions when there isn't one clear-cut answer.
Erica 17:42
Yeah, I can say, as a patient family of yours, we've, we've experienced that. And that is very helpful. Most of the parents in your patient population, they're not neurologists, nor do they have a neurology background. Neurology is actually a very intimidating field for a lot of people. This may be their first time even having conversations about anything neurological in nature. And these conversations, they're usually coupled with discussions on navigating a difficult prognosis. What approach do you take in educating parents and the patients? And what obstacles are you confronted with?
Dr. Goretzke 18:24
Yeah, you know, I think it's always on my radar and something I know I need to address when it is a challenging diagnosis or diagnosis that doesn't have really a cure. And we do, luckily, we have some things in neurology, where there is a cure, but there, you're right, there are many that we don't. And, and so but there are other, you know, there are things, there are forms of epilepsy that I know I'm going to be able to get under control. And yet they've done really good studies to suggest even when you get the seizures under control, the fear of, "Well, how do you know they're under control? And is my child potentially going to have another seizure?" It sometimes has a worse quality of life outcomes than cancer, when they when they've looked and compared those studies, even for treatable forms of epilepsy or seizures.
Dr. Goretzke 19:15
You know, so every family is open to that differently, or accepting to that differently, or goes through the stages of grief or coping differently. You know, I want to be there for them and help them in whatever way I can. But I'll, you know, so an example is, I know, with good confidence with certain patients that number one, I'm never going to get their seizures under control. Number two, their child is never going to develop anywhere close to normal developmentally, as we would say, and there's nothing I can do that's going to change that back. Now, I would never say that outright. But I know that so I try to I try to address what the likelihood is of doing things and what our goals should be. And I'll tell you most intelligent families are like, "Well, that's nonsense, you know, why? Why is that? You need to be held to do better than that."
Dr. Goretzke 19:15
So I mean, so I think sometimes we forget that, and we know our success rate with that, and we forget to take that step back at that initial visit with things we know are treatable and curable. But there's no way around it with some of these other, you know, disorders or diagnoses. And I think, I think one of the things that make you, I mean, I'm a pretty good clinician, I know that I'm not it's not being cocky, I just I know that I know, I've picked the right field. I know it taps into things that I'm good at, but one of the things that that I would not be the doctor I am without is my ability to kind of read where a parent or family is. Read their body language, read how they're receiving the message. And I don't have one style. I can pivot, I can shift, and I don't always do it perfectly. And I don't always get it right. And maybe I never find that style that works for you. But even within that, being able to shift and deliver messages differently, no matter what I say, sometimes there are families that are not ready to accept what that is going to look like over the next few weeks, months, or years for their child, or for them as a family. And by no means do I ever hold that against them. And I am forever grateful that I'm not on the other end of that conversation, you know, and so for me to say, "Well, why aren't they receiving this?" I mean, I've never been in their shoes. So I probably shouldn't necessarily judge how they're adjusting to this massive stressor that I've now placed on their family and their extended family.
Dr. Goretzke 21:41
And so I think the other thing that's really important is you have a shared goal with the family. And you kind of know what that's going to look like in three years, or in five years, or in 10 years. And every once in a while, you're wrong. Every once in a while that that treatment that you can offer is better than then you expected and sometimes it's worse. But many times it's kind of following a trajectory that you layout there, but the family doesn't know that and understand that. So it's, you know, it's interesting, every six months, every year, every couple of years, I'll see families kind of grow to understand that and, and their, not demands, but their expectations of what we're going to be able to do to navigate that and help, I can see a shift and I can see them come to that understanding. And, you know, much like we've had with discussions, and I'm not going to tell you where you guys fit in the parenting realm, but it pivots. It pivots relatively quickly and naturally to quality of life, right rather than at just an ambiguous "Well, this is what we want this kind of control this." You know, it's, "How does my child and how do we as a family do this as gracefully and as pain-free and as meaningfully as possible?"
Erica 22:56
It's interesting too, and this may be a component that you've not really known about, but a lot of us families do struggle with making difficult decisions about our child's treatment plan. I know for myself, I can't speak for everyone, but I know for myself and for Randy, we struggled with the desire of wanting our kids to be on the least amount of medicine in hopes of having less sedation. We wanted as many developmental opportunities for them as possible. But we also didn't want them to be uncomfortable. And sadly, what we have experienced from the outside world is pressure to push for avoiding these heavy meds. Phenobarb is a trigger word. And there's this push for just get them off everything, get them only on CBD oil, or only on ketogenic, and, you know, that just doesn't work for every patient. For us, phenobarb, it's been the only med to work every single time it is the most in our experience reliable medication for our kids. It's definitely a shunned medication in these private social media groups. There's a lot of pressure to do this as naturally as possible. And I'll be the first to say when my kids were born, or, I should say when I was pregnant with them, I was all amber beads and essential oils. So when they came out meeting phenobarb mixed in their breast milk, that was traumatizing in and of itself, not anything we expected. However, you and I have had conversations about weighing those decisions when you have to consider quality of life and comfort measures when you're adding heavy medications. Considering the work that you do, I imagine you had these conversations every day. I really appreciated the way you approach that with us. Maybe it was the right timing. You had seen us do some of that growing where we had a more realistic understanding of what the future would hold. So I'm just curious for our listeners, can you explain that quality and comfort conversation like you did with us?
Dr. Goretzke 25:09
Well, yeah, I mean, I think I think that is the important thing, though is when do you get to that point that you have that conversation, I think you have to have a relationship with a family before that conversation happens. They have to have faith that you know what you're doing. You have to show them that you that you make good decisions. I think there has to be a trust element there. And, and again, that is a, you know, there have been many families that, you know, five years into a relationship, we're still frustrated about things, and they're not ready to have that talk yet. So I think it's a, I kind of listen, and I hear when I hear the right things on your end as parents when it is probably the right time to jump in. And every once in a while, I'm wrong. And and I start going in that direction, a family wants to pump the brakes, and that's fine. And I know that and I back away from that.
Dr. Goretzke 26:02
But I think if you don't have a cure, then things things need to shift quickly to what is the impact that an illness or a diagnosis is going to have not only on the patient, but that's the that's the the challenging thing of being a pediatric provider is the family, the other siblings, you know, what is that going to mean to their life? And again, you're infusing your own values at the same time as a, as a parent and as a as a human.What would you consider to be meaningful versus not? So it's a delicate balance as you do that, but then kind of really laying it out there. Listen, we, we've tried a lot of things. I've tried to start with the things that are going to be the least sedating because I think that the comments that those communities make are right, and I've had healthy, normal 10 year olds walk in that some ER doc started them on phenobarb and I'm like, "What are they doing?!?" But you know, you go through the things that you think are going to A) make a marked difference in reducing symptoms of whatever their core neurologic challenges are or, B) are safe and are very unlikely to add risk or sedation or move things in the wrong direction. And when you've moved through those things creatively, and you've tried what's out there, and you're very upfront with them, "I think we're now in a different phase where I don't have anything else that does that," that conversation if you're, if I'm going to put your child on a medicine that's going to sedate them and you're going to lose a little bit of your child from that, I better be able to justify why I'm doing that. And I think quality and comfort really are my selling points for why I think that might be a consideration you would make.
Dr. Goretzke 26:14
Now, you know, and again, I think nobody should be judging the parents on where they are if they're not the ones that are taking care of this child all day long. So you know, people who are like, "Well, why are you on this many sedating medicines?" Or extended family members or other people are asking me why we're doing that. Well, why don't you volunteer to spend two weeks watching a child to go through this? And I think you'll understand why we're trying to do that. And again, I've luckily never had to do that. But I've lived through that experience enough, with enough families, that I know, I think I know at least, what they're going through, or it's been similar to other families. And so I think you find that, that middle ground, I just use the same discussion yesterday with another family that, "Listen, here's what we can do. Here's what I'm hoping this will do. But you as a family are going to have to let me know if what I've done has moved the needle closer in the right direction of comfort without sacrificing something else."
Dr. Goretzke 27:51
And again, I may not get it right. But I always have backup options. I can't remember, the last time I've told a family, there's nothing else I can do. The options become less and less optimal as we move forward. There's always something else but the drawback is often "Well, the only neurologic state I can get your child to where we're not doing these other things, having tons of abnormal tone, or posturing or seizures, is we're going to have to be on the sedated side. "And and I just, you know, how do you how do you make that decision as a parent, when you don't know what that mind is going through of the of the patient? You know, what would they want? I I don't know what they would want. I don't even know always what they know, or how do those patients even know that this isn't normal, that everybody goes goes through this? But I, just my gut as a human, and as a parent, and as a provider helps me try to at least walk parents through where I think that right middle ground is.
Erica 29:49
Yeah. It's really good. I like to hear that. Thank you. That kind of segwayed into my other question for you. Rarely is one patient the same as the next. We have the perfect example of that in our family where we have two children - very identical on paper, they responded very differently to different medications and different treatments. What worked for one, didn't work for the other, and vice versa. How do you navigate that with parents when they do have a hard time understanding why it would work for one patient and not another?
Dr. Goretzke 30:23
Yeah, that's, again, it's easier said than done with certain families. You know, when a patient or a family, have a diagnosis that is finally reached - often it's a genetic diagnosis - you know, one of the things is, well, they want to know, "Well, what does that mean? What is the future hold?" And so you, you know, you can look at case series of patients, or you can talk to experts in the field, or you can join support groups for a unified diagnosis or unified gene. But I think you'll find even in those groups, there is a ton of variability. You know, when you go back to referencing the, you know, how you're outcast, for using phenobarbital...Well, you know, you have to be really careful that what you're comparing to, is really a true similar shared situation, because even within the same gene, or the same diagnosis, there are patients who are much better off or much worse off from intellectual, or a functioning standpoint, or control of seizure standpoint, or control of tone standpoint. And it's likely that there are many genes that play off of each other, that alter that, and we're just scratching the surface for that, to be honest. We get a gene and we say this is probably the thing. But what is it that leads to that variability of of how severely or not you're affected in that gene? There's likely a lot of other candidate genes that are influencing that. And that probably is what is also influencing response to treatment.
Dr. Goretzke 31:59
It may be that a certain age that you introduce treatment even may be more effective at a certain age. And so if you're, if you're doing something at age five for one sibling, and you've got a younger sibling, that's two years younger, they may respond positively or negatively, compared to the other sibling, because it's a different age. There are a couple of models that suggest that for certain forms of epilepsy. And then, you know, who knows there's a ton unanswered that we just don't have that have the answer to. I have some families where they respond so similarly that I know what the med is, and I even know what the dose is. And we don't even have to waste time with another testing. I did a set of siblings with petit mal epilepsy where that was the case. Same exact med, same exact dose - under control within a week. And but it just it's rare that it follows it so cleanly. So I think parents kind of understand that because they know their kids are different. They may not understand it originally, but when they sit back and think about it, I mean, I think they'll understand that. There's enough difference that even with identical twins, sometimes there's differences personality-wise, we know that means there are differences with how their brain circuitry has developed, and probably differences in how their brains gonna respond to things.
Erica 33:15
Well, thank you for sharing that. You may not even remember this, but the first time we met you, we were in the ER with Margot. You sat down with us, and you had to excuse yourself to leave because you had a family emergency come up. There was something about the way you sat down your willingness to express that. You know, typically when we see physicians, you know your role so well, there's certain confidence built into the routine of your job. In that moment, we witnessed a shift. We didn't see you just as a doctor; we saw you as a human, like us, navigating the unknown. It was kind of a leveling moment for us. And since then, you've seen us through a series of very stressful, scary times in our lives with both of our children. You were there when we unexpectedly brought Caratacus, and you had to deliver some pretty devastating news to us. Can you tell me, and you kind of already have indicated, a lot of what you do it sounds like you lead with intuition. You can't learn that in medical school. But as an educator, how do you communicate that to your physicians - how important it is to listen to those instincts, to show the human side of themselves when the human side of themselves needs to be shown. How do you teach that?
Dr. Goretzke 34:50
Yeah, it's really interesting. And no, I did not remember that first emergency room encounter. I definitely remember that. I remember the NICU encounter with it without any question. I mean, my heart went out to you guys. And I was just like, you know, I and I've had a couple of other families, unfortunately, where we didn't diagnose something until there were a second or even a third affected child. I mean, that happens. Sometimes our technology to be able to diagnose things is improving. But it's sometimes moving at a snail's pace. I remember, I remember that encounter, I remember with a couple of other families similarly, like, you know, I just I put my parent hat on. And again, I don't want to minimize any of the joys that come with what you have experienced with both Margot and Caratacus, but there's been a lot of pain and frustration that I'm sure has gone along with that. And that's, that was the first thing that goes through my head, when I, when I go through that encounter, is, "They really didn't need this." And it may be unfair to say it like that. But that's what I think is a person and a parent. I mean, you know, it just is, I don't know how you handle one amazingly special needs child to think that there's a second one now that that is, where we're likely going to follow in those same footsteps - it is just, I don't know. And again, you guys have done it with grace and probably have hidden a lot of stuff on the inside and probably value a ton of your experience with both of them. But that's what I think of as a parent of six completely normal developmental and cognitive children. That's, that's where I go to first. And then I quickly regroup on falling back to, "Well, so how do I help them?" And I pivot to that quickly, and sometimes probably even subconsciously without even noticing it?
Erica 36:48
Mm-hmm. Well, you definitely entered that room with heart. Everything about that experience with Cratacus, we felt like we had a family in the room with us at that moment. And like, we weren't alone in that sadness, and that surprise, and that shock. For those that you're training? You can't; you can't teach that. So what do you tell them?
Dr. Goretzke 37:12
You can't; you can't teach it. And so I guess I just, you know, you go to school, your student, you're a med student, you do have to remember, no matter what you've learned in the books, if you can't relate to people, you're never going to be the provider that you probably want to be. And we know there are people that probably were never meant to be good relators. And you know, I'm not going to downplay any specialties, but they either put people to sleep, or they work in the dark. There are lots of medical school jokes about different specialties. But if you're going to be someone who interacts with families and patients, you know, you have to, you have to figure that out. And I think the other thing that I learned relatively quickly is; they’re not necessarily expecting perfection. And I think, I think as long as you can recognize that you don't have to get it perfectly right. You have to have some semblance of building a faith that you know what you're doing. But I think one of the things I teach our trainees is, "Don't be afraid to say, I don't know. Don't be afraid to occasionally be wrong or have to ask for help." And I think in that way, as you do that, you remain humble. I mean, you still know a lot and you still are really good at certain things. But the second, you don't want to ask for help or that you feel this pressure that you have to figure this out, when we know there are unsolvable and unfixable problems, I don't know how you do that.
Dr. Goretzke 38:44
So I think early trainees are not very willing to ask for help or admit out loud that they don't know something. I don't know; maybe I'm reading this wrong, but I mean, I've become much more comfortable answering that. And I'll tell you when I don't know the answer. Usually, nobody knows the answer. And I think that's what I've learned over time. Now, you don't want to be the person that never knows the answer, and then your colleagues always figuring it out, because then you probably need to learn more. But you know, I think when you come to accept that, then you then you're able to pivot very quickly, "Well, I may not be able to figure this out right away. But here's how I can help. Here's what I think I can do for you. I can promise you if it crosses a threshold where I don't know what to do, I know how to ask for help and get you help." Or at a certain point, say, "I don't really, I don't think there's anybody else who's going to be able to help differently. But I would love for you to go meet a different group and get their opinion."
Dr. Goretzke 39:40
I also think a doctor who gets frustrated when people ask for second opinions you should run away from, because if they don't have the confidence to understand that that's going to be necessary a percentage of the time - that makes me very nervous when I hear that. I welcome second opinions. If a patient is thinking that, they're never going to team with me or partner with me well enough for me to really become their true treater or physician unless they explore that possibility. And again, every once in a while they go get and they find an answer that's different than I was thinking, and that's probably even better. You know, and so who am I to prevent that from happening? Because I am far from knowing everything, and I can't be an expert in everything. So I guess, I think that's, that's one way to do it.
Dr. Goretzke 40:30
And then I think the second thing that I try to share with them is, you know, you have an incredible power or control over how this goes from here with how you present your first encounter with this family. You can either have them join you as a team and understand and build confidence in you, or you can chase them away and maybe even have them not be able to develop trust with any practitioner for years because you get things off on the wrong foot. I think if you keep a couple of those things in mind, and you've worked hard, and you've been able to study, and you've been able to practice; I think you're going to be the clinician that people will, will flock to and really will see value in the care that you provide.
Erica 41:14
I think those are really great things. Many people in society have no comprehension or understanding of what it's like to be a pediatric neurologist. And I was hoping you could share with us, or future pediatric neurologists out there, any aspects of your job that you feel it'd be beneficial for others to have an understanding of anything that maybe even surprised you when you came into the field.
Dr. Goretzke 41:41
I don't know, maybe some people reach this differently, but I didn't understand how important my role was going to be for diagnoses that had no treatment. I mean, I think I think that's what draws a lot of us into neurology. And, you know, as we see something acute, we like to be able to figure out where the, where the brain and its connections with the body is, is having dysfunction. We like to diagnose, and then we like to treat, and we like to make better. And I think that is it's amazingly rewarding. It's a great experience. It's cool when you can walk in and find somebody that's nearly paralyzed from a spinal cord thing and you can treat them with, with steroid medications, you make a diagnosis, and they never have another neurologic attack and they make a full recovery. That's awesome. Without question. It's awesome when you can reassure families of relatively healthy individuals that are only going to need you involved in their life for a couple of months, or a couple of years; that life's gonna go on as normal.
Dr. Goretzke 42:43
But I think I didn't, I didn't really understand how much true chronic disease or palliative aspects of making it through life, or how much I was going to value those experiences in what made me a clinician that were as rewarding, if not more rewarding. And I again, I think those kind of diagnoses or concepts scare a lot of people off, I think similar to how does an Oncologist decide they want to do pediatric cancer management? Again, luckily, a lot of the cancers are treatable, but you know, every, every month we have a brain tumor that that is diagnosed and a previously healthy kid and sometimes we can fix them, but many times not. And so how do you? How do you understand that? Or how do you anticipate that that's going to be something you find value in? You know, it's not for everybody? And I don't think everybody enjoys that aspect. But it is, it is certainly it's been amazingly valuable for me and rewarding for me. I think enjoyable is probably the wrong word. But to be honest, there is enjoyment. Yes, you heard me yesterday, I, I don't remember which family room I was walking into, but, you know, about half of my patients in cerebral palsy clinic are going to school and walking and, and having a good time and, and half are in a wheelchair will never do anything for themselves. But they're all families. And they're all they're all kids who have parents that love them. And it's it's just incredibly amazing to be part of the team. And it's, and it's been great.
Dr. Goretzke 44:11
So I think Don't let those kind of diagnoses or those kind of patients scare you. And I teach this to our pediatric colleagues who rotate through with us, you know, how do you start meeting a family whose kid is in a wheelchair and doesn't talk and doesn't walk? Well, just ask him what they like! Ask them how they spend their day, ask him, ask him what they like to do, how school is going, you know, what kind of class setting are they in, you know, how do they How do their peers enjoy having them there? And you know, take it from there. Look at the kid and talk to the kid. I think that's the other thing. You know, people go in and they they don't want to look or they get nervous, and then go in and touch the kid and say hi to him. You know, that's, I don't know what a lot of my patients do or don't perceive from that. But I'd like to think that they appreciate that and understand that. Neurology is intimidating for a lot of reasons, but I think figuring out how to engage with a patient or a family in that situation, it takes some time. And you really, I think that's my job is to make it less scary and less intimidating so other clinicians are able to have that same ability to engage with the family.
Erica 45:21
Yeah, that is a very important and valuable skill to have and to learn. It's really just what most parents like myself want is for society to interact with our children, the way they do everyone else, the way they would with any other child. So thank you for sharing that. And I hope that that is a lesson that, you know, your students are walking away with and in realizing themselves to be important.
Dr. Goretzke 45:51
Yeah.
Erica 45:53
Okay, Dr. Gretzky final question. Let's pretend for a moment that a miracle happened overnight. And suddenly, without any warning, healthcare became this perfect, flawless system that you had always dreamed of it to be. Without anyone telling you that this miracle occurred? What is the first thing you would notice to be different when you went to work the next morning?
Dr. Goretzke 46:19
Well, that's a great question. You know, I may give you a couple of different answers. I feel like there needs to be a change in the way doctors are reimbursed for the work they do that shifts away from how many patients did I see today, to how well did I do for this patient? And I struggle with that all the time with my folks and trying to figure out their productivity and what they need to do to stay off the radar and all of that, and how does it practice make money? I think we've heard many versions of this, over the years that eventually we're going to get to that point. But it can't happen soon enough. I mean, we've got pediatricians who don't have enough time to even sit down and spend more than 10 minutes with you, well, how are they supposed to handle a teenager with headaches in 10 minutes or, or somebody that has behavioral issues or concerns or learning concerns, so they're not really incentivized. So they end up preferring them to me, because I can carve out 30 minutes or 60 minutes to do that. But when I'm doing that, then I don't have access to see the kids that really need my expertise in the same way. You know, the one of the joys about practicing here at Cardinal Glennon is, you know, we'll see anybody, you know, we, we see any insurance, we'll see if you don't have insurance, but you know, that doesn't always fly for families who want access within a couple of days. I'm never gonna have that access to attract patients if I'm still seeing things that a pediat....And I think pediatricians want to do more. But we're notreimbursing them correctly to sustainably pay for their med school loans or their practice.
Dr. Goretzke 48:13
And, you know, again, I know in the community doctors and salaries, that's probably not gonna garner a lot of sympathy. But it is the reality that we've got to figure out how to use some of this quality that I've talked with you about, and how do we then how do we judge and reimburse physicians or practices for the quality of work that you do? And then the outcomes that go with that rather than just volume. And I think that would be one thing that I would that I would say for sure, that frustrates me frequently. And I think the second thing is, I won't make this very political...you can't work at a place like this and not recognize how fortunate A) we are, but how how many other inequities are out there in society, that are going to determine what the outcome is for what I'm seeing that patient for, a hundreds times more than the medications I prescribe. Until we as a society figure that out. And until we as a medical community, figure that out and get the other stuff that's needed just as important as the medication I think we're gonna have a long way to go still with optimizing health for our families. And I think that it's hard, a pandemic doesn't do wonders for that. There are numerous out articles out there of how that's exposed, and even worse than those inequities. And I will say, and I don't I'm not worried about getting sued for this, but something has gone very wrong when the Managed Medicare CEO is making $20 million a year.
Erica 49:51
Yeah.
Dr. Goretzke 49:52
Where is that money going? Why isn't that money going to some of these social determinants of health? Insurance companies have done some good things. But until we wrestle some of that control and ability back, and reroute some of that money for some of those socioeconomic needs of our group, I don't I don't know that there's a medicine that's going to fix that. How about money to come to the appointment? How about ensuring that this child that, you know, we're frustrated with because they've no showed for three straight appointments...I bet the medical needs of that child is number 10 on the priority list of that. You know, so how do we really optimize, you know, making sure there's follow through? That's, that's the really thing that is frustrating. I mean, I do love being a pediatric provider. But for a certain patient and a certain age, we can have all of the things we want to do. But if if they're in an environment that isn't set up to support that. I mean, you guys know what you've gone through. And, you know, if you were a single parent, and/or struggling to find work, how do you even get close to figuring that out? So I mean, again, it's, it's not just the medical system, there's a lot of societal things that need to fix. And you know, it's easy to say that, and I probably don't get on my platform enough to affect change. But how do we do that as a, as a society, as a community, as a medical community, to fix that? Yes, the insurance issues are a major challenge as well. But you know, we're seeing all of these patients with Medicaid or no insurance, and we'll see them and we'll, we'll treat them but it's hard to get that other stuff that they need. There isn't a great outlet for that. I think, if I could, if I could take one doctor and trade them in for 20 social workers, I would do that in a second.
Erica 51:58
Hmm, yeah. Not only does our society need more social workers, more mental health professionals, but we also need to make sure that care is available and accessible to everyone.
Erica 52:11
Yeah.
Erica 52:12
Dr. Goretzke, thank you so much for joining me today. It's been a pleasure. I've really enjoyed hearing your perspective on these matters. I often tell people in our social media groups that I wish they could have our doctors, I wish I could share you all with the world, because we just think so highly of all of you. And in a way, I think that's what I'm trying to accomplish with this podcast, is to share you with my people. So thank you for obliging, and
Dr. Goretzke 52:44
Well, I appreciate it. I can't thank you enough. And what great questions great, great concept. Whether I'm more human or not, we'll see. But, but I really appreciate the questions. It's a true pleasure to work in a job where just doing your job can have those comments made about you. And so it really is rewarding. That's what I do all day, that's not what I do all day long, but when I'm seeing patients, that's what I do all day long, and it it recharges the batteries and it is a rare day where it's anything about my clinical practice of child neurology, where I'm not looking forward to come into work that day. Some of the other administrative stuff gnaws on you, but it's a, again, I can't envision even anywhere close to a second career choice meeting the satisfaction, or the enjoyment, or the reward that I've had from this one.
Erica 53:39
That's awesome.
Dr. Goretzke 53:41
That's really a blessing right when you lock into this career, and you feel that way.
Erica 53:46
Absolutely.
Erica 53:47
I'm very happy you have that.
Dr. Goretzke 53:49
Thank you.
Erica 53:52
Ever since I recorded this conversation with Dr. Goretzke, which was several months ago, I've been sitting on some thoughts and really just letting things marinate. I really appreciate that he made a point to speak to the social inequalities that directly impact the efficacy of medical interventions and treatments. I plan to speak more about this in my solo Afterthoughts episode next week. It will definitely be an educational episode, filled with some extremely vulnerable thoughts that I've honestly had a hard time navigating and attempting to share.
Erica 54:30
Thanks to all of you, for your constant love and support of this podcast. I finally get to release one more piece of my big Atypical News. We have merch! You can find a link to the merch shop on our website, Instagram and Facebook pages. I will be posting some pictures of my personal favorites. A portion of the proceeds go directly to this podcast and to providing meal tickets for families at Cardinal Glennon. I'm excited for some of these big changes that will be happening for Atypical Truth. In the months to come, we will be helping our community with our personal mission of actively changing lives one podcast conversation at a time. But for now, I will just have to keep you waiting up the edge of your seat for the rest of the exciting news.
Erica 55:22
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